Long OTP - Update & Need Your Thoughts
Lady K
to see how you're all doing, and even though I rarely post it, please
know that you're always in my thoughts and prayers.
An update, with a little history first. I'm sorry, but it's a
terribly long post, but I don't know how else to give you all the info
you'll need to understand the nightmare I'm dealing with right now.
After I was Dx'd in November 1998 I was told that I had the rarer more
severely aggressive form of Rheumatoid Arthritis, which was why the
Social Security doctor didn't even hesitate to approve my disability
claim for SSDI.
Two years of trying just about every med available brought no change,
during which I was on Prednisone to help me function, which was not
the greatest as I needed a cane or walker much of the time. Then the
side effects of long-term use of steroids were getting so bad that my
RD decided that it would kill me faster than the disease would, and
tapered me off of them over a period of about six months, with no
problems. Finally six months after that they hit on a cocktail that
seemed to do the trick, and the RA was slowed down progression-wise so
that it was reclassified as "moderately severe".
A blissful year ensued with the meds keeping pain and inflammation
under control. Then, I guess because of the immunosuppressants, I
developed a urinary tract infection that went septic. It was
devastating and I nearly died, and it shut my body down so badly that
I had a heart attack. An angiogram confirmed that it was not
cardiovascular in origin, as my arteries are clean and unplugged.
That was October of 2002. Two months later I had the Flare from Hell,
and the RD had me do a Prednisone burst. Since then my RA has gone
severely aggressive again, and I've been on steroids more than off
since then as new meds have been tried, from antibiotics to Humira, to
try to get it under control again. Nothing has worked, and finally
we're giving MTX a shot.
My current afflictions from the aggressive RA have increased again.
In addition to a Rheumatoid Pleural Effusion in my left lung and
Rheumatoid Asthma and COPT, Raynaud's Syndrome in hands and feet, the
attack on my tendons and ligaments has accelerated as well and my
right hand and wrist are almost unusable now. The right wrist also
has a bit of Carpal Tunnel Syndrome. I've had to relearn how to do
things left-handed.
The tendons in my feet are so bad that I have large inflamed and
swollen balls on the metatarsal pads of my feet, and my ankles are
really bad with Tarsal Tunnel Syndrome due to the swollen connective
tissues, causing the bottoms of my feed and my toes to be constantly
partially numb, the tingling type of numbness that is painful.
The Rheumatoid Nodules in my elbows are so involved now that they're
interfering with arm movement. And I've had dislocation in some
finger joints, and one toe joint. And the tendons in my palms, like
those on my feet, are so swollen that leaning on a cane when necessary
is just painful.
The only reason we hadn't tried Methotrexate was because I used to be
a heavy drinker and my liver enzymes were elevated for a long time.
But I quit and have been taking Milk Thistle ever since, and for two
years now my bloodwork has been normal. So we decided that it was
time, with close monitoring, to give MTX a shot, all things
considered.
As you know from my previous post, the MTX gave me awful fever
blisters on my lips and nostrils. It also knocked me on my butt with
other side effects. And my instinctive response is to want to quit it
immediately. The reason is a bit complicated.
I'm most fortunate in that I have a high threshold for pain. But
after 5 1/2 years of constant 24/7 unrelenting pain, with these latest
complications I'm afraid I've reached the end of my rope. I had a
genetic heart defect which was corrected by surgery, but certain
conditions will still cause me to go into tachycardia requiring a trip
to the ER. One of those things is any type of drug that's a
"depressant" to the system, such as narcotics. So I can't take
anything that has codeine in it, or narcotics. Vicodin is out.
Tylenol3 is out. Other pain killers we've tried triggered it as well.
And the only thing I've been able to safely take consistently is
Darvon or Darvocet N100.
And that's just not cutting it any longer. Not unless I also take a
low dose of Prednisone, 2.5 mg to 5 mg. And the Humira, after six
months on weekly injections, is simply not working or helping at all.
(Although if you want a laugh, the Humira made my hemorrhoids shrink
up completely! lol!)
So aside from hands and feet that are dreadfully painful now, all
major joints involved, and all the other complications....on top of
that now I have the awful side effects of chemo pills to deal with.
And I just don't know if I can tough it out any longer.
Thank heavens that the Baclofen is keeping the Fibromyalgia under
control! But I'm literally running out of inner reserves at this
point.
So here's where I'd really appreciate your thoughts and advice, if you
would be so kind. I'm willing to give MTX a try, but for no longer
than three months unless the side effects get even worse, in which
case the limit is one month. (Have any of you taking MTX found that
the side effects diminished or became tolerable?)
What I'm leaning towards is going back on Prednisone. I've discovered
this past year that if I take a low dose, of 2.5 to 5 mg, then I don't
get the serious side effects yet it's enough to give me relief from
the pain and inflammation along with the Darvocet N100. And stop
taking everything else, completely, including the MTX, the Plaquenil,
and the Humira. My immune system is so shot at this point that I'm
terribly afraid of getting another infection that goes septic. Plus
every cold and flu I get is devastating.
I'm at the point where I have to chose whether I want to live
miserably while trying to fight the disease with concoctions that will
eventually destroy my liver or kidneys. Every morning I wake up and
it takes, usually, three hours before I'm able to warm up and move
around and feel human enough to try to do normal living activities.
And those three hours are misery until the meds start kicking in.
Or do I want to take the medications which make me feel good, and
allow me to function as near-normal as possible, and the disease be
damned. All I want is to be able to live a life of quality, to be as
self-sufficient and independent as long as possible, and to be able to
do simple living activities without feeling sick and suffering from
brain fog, headaches, diarrhea, and general malaise from the side
effects of the drugs I've had to take.
Please understand that I really don't care about living a long life.
I've had a hard life, but it's also been a very very interesting and
adventurous life! And I've been blessed in the winter of my life to
have at last found a life partner who I adore and who treats me like
I'm the most special and precious person alive; a man who is one of
the kindest, most thoughtful, patient and caring men I've ever met.
What matters most to me now is not long years ending up in a
convalescent home, but a few QUALITY years in the time left to me.
IOW, I do not fear death. What I fear most is living in misery every
single day until that time comes.
I know these are deeply philosophical and emotional things to be
exploring. But to save my sanity at this point I feel compelled to
take action and make some serious decisions. For 5 1/2 years I've
been seeing doctors who say "here take this pill and come back in 3
months". Or 4 months. Or 6 months. Then they assess the success or
failure and modify the cocktail of drugs, and it's another long
stretch of months before the next phase. I just don't think I can do
this anymore. From the core of me I know I'm at my wits end. I'm
tapped out. And I don't think I can find the strength or will to keep
trying and trying and trying, all the while hurting so bad it brings
tears to my eyes just to lean down to pet one of our dogs or cats.
So, I'm willing to give MTX a brief trial. But beyond that I just
don't think I can go on with this nightmarish program of trial and
error any longer.
Thank you kindly, all of you who have had the patience to read this
massive rant. Your thoughts and ideas and advice would be very much
appreciated.
Kitt
Joan Carter
alt.support.arthritis:
>So, I'm willing to give MTX a brief trial. But beyond that I just
>don't think I can go on with this nightmarish program of trial and
>error any longer.
What a burden you have to bear. My suggestion re the MTX is to ask for the
injectable kind. Far less side effects with that. All I can do is hold good
thoughts and hope it works.
---
Joan
Harvey R. Stone
are people here that are going to pray for you and your condition every day.
I know you are tired of the struggle and the strength it takes to just do
simple things but you have good doctors and a plan to make things better.
Some days a person just has to keep putting one foot infront of the other as
we try to make it through the day.
in my prayers
Harv
"Lady K" <lady...@yahoo.com> wrote in message
news:lkqm80d435a54qmoi...@4ax.com...
Di
> Hi all. While I don't post much any longer, I do look in now and then
> to see how you're all doing, and even though I rarely post it, please
> know that you're always in my thoughts and prayers.
>
>
> Thank you kindly, all of you who have had the patience to read this
> massive rant. Your thoughts and ideas and advice would be very much
> appreciated.
>
> Kitt
>
>
Kitt, I really don't know what to say, other than my heart goes out to
you. My disease, PA, isn't very aggressive, and Enbrel is keeping it
well in check. I do take low dose pred every day; have been for a few
years. I also take Miacalcin and calcium to keep the bone loss in
check. But, every time I try to go off the pred, I flare. I now take
4mg of Medrol every other day, alternating with 1/2 tab, or 2mg Medrol.
That's equivalent to 2.5-5 mg of Prednisone. I so much want to go off.
Maybe some day.
I also take low dose MTX, 7.5mg/week. Some weeks, it's not a big deal.
Other weeks, it decks me with fatigue and migraines. From what I've
read here, hydration is a big player in how you respond. So, on the
days you take the MTX, make sure you drink adequate water. Also, I've
doubled my Folic Acid on the day of my MTX, per my RD's recommendation.
Again, sometimes it works, sometimes not.
Since I've been on Enbrel, I've not had any major incidences of
sacroiliitis, or bursitis for that matter. Sometimes, I get twinges,
but that's it. From your story, I guess I should be counting my lucky
stars. I really don't have it very badly, at all. The Enbrel has also
basically eliminated the tendon issues for me. I am so thankful that I
no longer need a cane to walk.
My right hip is slowly deteriorating from OA, and I think there's a new
hip in my future, but I'm not there yet. However, I have groin pain,
though not severe, almost continually now. But, I consider myself
"fixable". I'm lucky. Hearing your story makes me realize how lucky I
am, and how I should never take that for granted. Thank you.
I agree with you, though your philosophical dilemma rings loud and
clear. At this point, quality of life is more valued than quantity. I
say go for the MTX. Make sure you drink water and take folic acid.
Take the injectible MTX, as people do have better results relative to
side effects. Give it this attempt. You do owe it to yourself this
time. I think you may always be wondering, if you don't.
You're a tough lady, Kitt. So hang tough, and keep us posted.
--
Di
dabell at optonline dot net
My weekly mantras:
OSIM (Oh shit, it's monday)
TGIF (Thank God, it's friday)
Kelly Cobb
Was wondering about you just the other day and hoping you were well. I'm so
sorry that you're not. I wish I had some magic words of wisdom but all I
have is this giant cyber hug.
I'll hope for a miracle for you and for more pain-free days ahead. You have
to do what is right for you and find the joy in life as often as possible.
Kelly C.
---
Outgoing mail is certified Virus Free.
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Jo Firey
> to see how you're all doing, and even though I rarely post it, please
> know that you're always in my thoughts and prayers.
>
> In addition to a Rheumatoid Pleural Effusion in my left lung and
> Rheumatoid Asthma and COPT, Raynaud's Syndrome in hands and feet, the
> attack on my tendons and ligaments has accelerated as well and my
> right hand and wrist are almost unusable now. The right wrist also
> has a bit of Carpal Tunnel Syndrome. I've had to relearn how to do
> things left-handed.
>
>
> a heavy drinker and my liver enzymes were elevated for a long time.
> But I quit and have been taking Milk Thistle ever since, and for two
> years now my bloodwork has been normal. So we decided that it was
> time, with close monitoring, to give MTX a shot, all things
> considered.
>
> control! But I'm literally running out of inner reserves at this
> point.
>
> So here's where I'd really appreciate your thoughts and advice, if you
> would be so kind. I'm willing to give MTX a try, but for no longer
> than three months unless the side effects get even worse, in which
> case the limit is one month. (Have any of you taking MTX found that
> the side effects diminished or became tolerable?)
>
>
> allow me to function as near-normal as possible, and the disease be
> damned. All I want is to be able to live a life of quality, to be as
> self-sufficient and independent as long as possible, and to be able to
> do simple living activities without feeling sick and suffering from
> brain fog, headaches, diarrhea, and general malaise from the side
> effects of the drugs I've had to take.
>
> Please understand that I really don't care about living a long life.
> I've had a hard life, but it's also been a very very interesting and
> adventurous life! And I've been blessed in the winter of my life to
> have at last found a life partner who I adore and who treats me like
> I'm the most special and precious person alive; a man who is one of
> the kindest, most thoughtful, patient and caring men I've ever met.
> What matters most to me now is not long years ending up in a
> convalescent home, but a few QUALITY years in the time left to me.
> IOW, I do not fear death. What I fear most is living in misery every
> single day until that time comes.
> don't think I can go on with this nightmarish program of trial and
> error any longer.
>
> Kitt
God I wish Larry were around to help here.
First I'd give the MTX a little time. Usually it is started at a low dose
and slowly increased. You body should get used to it so the side effects
will diminish. And as others have said, the injectable is the only way to
go. There are a whold bunch of us who find a spot of belly fat to inject it
into once a week. Just do it the night before the easiest day of the week
for you.
Sounds like you need to concentrate on what makes today and tomorrow
liveable. Or at least what makes next week promising. And make sure you
have a doctor that understands your goals.
Jo
DCHAM
didn't mention enbrel or remicade, but i suppose it's safe to assume you have
tried them?
i was one of those never able to tolerate mtx, but most people can so i would
certainly go for it (the injections). you have hard a very hard row to hoe, and
i'm glad you have a loving partner to help you through this. also glad you
posted.
take care,
diane
dadand1
> to see how you're all doing, and even though I rarely post it, please
> know that you're always in my thoughts and prayers.
>
> An update, with a little history first. I'm sorry, but it's a
> terribly long post, but I don't know how else to give you all the info
> you'll need to understand the nightmare I'm dealing with right now.
>
>>
> exploring. But to save my sanity at this point I feel compelled to
> take action and make some serious decisions. For 5 1/2 years I've
> been seeing doctors who say "here take this pill and come back in 3
> months". Or 4 months. Or 6 months. Then they assess the success or
> failure and modify the cocktail of drugs, and it's another long
> stretch of months before the next phase. I just don't think I can do
> this anymore. From the core of me I know I'm at my wits end. I'm
> tapped out. And I don't think I can find the strength or will to keep
> trying and trying and trying, all the while hurting so bad it brings
> tears to my eyes just to lean down to pet one of our dogs or cats.
>
> So, I'm willing to give MTX a brief trial. But beyond that I just
> don't think I can go on with this nightmarish program of trial and
> error any longer.
>
> Thank you kindly, all of you who have had the patience to read this
> massive rant. Your thoughts and ideas and advice would be very much
> appreciated.
>
> Kitt
>
So sorry to hear of this trouble. Long term pain can sure take its toll.
There are counselors who deal specifically with long term pain issues. Our
hospital had a chronic pain support group for some time as well.
Me? I guess I'd shoot for quality versus quantity. We each have to make our
own decisions in this area though. Hope you find your answer soon.
Z
Mary Z
> Since then my RA has gone
>severely aggressive again, and I've been on steroids more than off
>since then as new meds have been tried, from antibiotics to Humira, to
>try to get it under control again. Nothing has worked, and finally
>we're giving MTX a shot.
So Humira didn't help at all? Did they try it one shot per week? How
about Remicade did you try it? Sometimes a Biologic and mtx work
better as a combo. I doubt I would have had much of a response to
Remicade or Enbrel alone. You should also consider Arava in lieu of
mtx it might be easier to take. If you continue with the mtx be sure
to ask your Dr for injectable form and ask about leukavorin it works
better for combating side effects of mtx. They give it to cancer
patients as a rescue drug. You will probably need to get into the 20
to 25 mg range of mtx before it is helpful. I hope you find something
that works. -- MZ
Visit my website:
http://www.mzuschlag.com
RoseB
Insofar as teh mtx, like others have said, try to get teh injectable,
take it at night, and ask for leucovorin rather than or in addition to
flioc acid. Leucovorin is folinic acid and is used as a "rescue drug"
so to speak, anywhere from 12 to 24 hours after the mtx. It helps
with fatigue, nausea, prevention of mouth sores, and the like.
I believe in my heart that there is something out there that will give
you the quality of life you deserve.
Like Diane, I wonder if you have tried remicade. Since it is usually
given with mtx, perhaps this is one you have not tried.
Rose
@}>-->>>
Please remove "Ima" to reply privately!
ShenMei9
I understand exactly where you are coming from. There are so many new things
with much better toxicity profiles in the works so it may be a matter of
holding on.
I also get tacchy with many protocols including pred at over a microdose level
so I can relate to that as part of the problem finding something that helps.
Of course everything I am going to write is both projection from my own
experience and experience working with my chronic pain patients so forgive me
if I misread any of your issues.
It is difficult to even be able to figure out what your options are without
being able to get a little headspace from both your pain and the complexity of
your physicality. Can you access acupuncture where you are living now?
Acupuncture can help provide both amazing pain relief but also, because
needling helps release serotonin, it can help with a sense of well being that
might give you the break you need to buy you time to find a protocol that
works. In addition, acupuncture will help support your liver if you do MTX
injections.
Have you tried a tens unit? TENS can also help break up the level of pain you
are in and usually doesn't set off that tacchy response that pain meds do.
I think I would also look into finding a therapist who deals with the issues of
chronic illness (specific training which is much different from the usual MFCC
therapy training). Chronic pain therapists can help you sort out quality of
life issues and provide that soft place to land that I need at least once in a
while.
I know these are Band-Aid suggestions but if I am reading this correctly, you
are at the end of your psychological and physical rope, a place we all know
only too well. At that point there has to be something that give you the
little break you need to make the decisions you are discussing with absolute
clarity.
Again since you do seem to be in such a good relationship right now, you just
may need to hang on until the new drug hits the market (check out AI as they
have some great info on the new stuff coming up-I have researched some of this
in detail and I who am allergic to everything, am optimistic). There are whole
new processes of management just a short time away, not just different twists
on the TNF blockers.
You have my love, respect and prayers and if you ever want me to do research
for you finding an acupuncturist or chronic pain therapist, timelines for new
protocols, or even something as simple as making you a hypnosis tape, you can
also have my phone number.
Melinda
DeeTee and Bob Taggart
nauseated. Then my RD put me on the injectible MTX. WHAT a difference!!
So see if you can start on the injectible. The side effects are minimal
that way. It has really made a difference in my life.
You are in our prayers!
DeeTee
________________________________
DeeTee and Bob Taggart
http://www.marykay.com/dtaggart3
http://mysite.verizon.net/vze8fwov/
________________________________
"Lady K" <lady...@yahoo.com> wrote in message
news:lkqm80d435a54qmoi...@4ax.com...
donnah
others with more knowledge of meds have replied...
and this is jmo, of course
but I am thinking of my father who is terribly crippled by his RA--his
started way before there was so much available, but he did try newer
ones as they came out. but he also reached this special place where
you are now...
quality of life was his decision...he and his doc decided to
"maintain" him where he would have some relative comfort rather than
being constantly sick from side effects.
I had the privilege of taking care of him this past week while he had
a cold and my mother was unable to keep up (they are both stubborn,
independent people so it really was a privilege!)
We were able to talk quietly when Mum was resting and he spoke at
length about his RA. He said he never regretted his decision to stop
aggressive treatment...that he had bad days and very bad days, but he
still squeezed out every bit of goodness of his day--and, yes, it was
hard at times he said, but it was still better to him than what he
suffered through with side effects.
He has always had a "go-get-'em" attitude, but he reached the point
that he wanted to get other things...
In now way am I suggesting this action to you--I am only sharing his
experience and why he made it. It helped guide me in making some
decisions recently regarding quality of life for me.
People have to be totally honest when these issues arise and that can
be scary and heart wrenching and make you weep...but you have to do
what is best for you, not anyone else. It is not discarding their
feelings or needs, it is asking them to accept what you need and
working with you to make the most of every wonderful day.
You will be in my prayers...
donnah
"Lady K" <lady...@yahoo.com> wrote in message
news:lkqm80d435a54qmoi...@4ax.com...
Rosemarie Shiver
Gentle Hugs from Rosie
--
"If you wanna get it done, you gotta fight for yourself" -- Meat Loaf, Bat
Outta Hell II
"Lady K" <lady...@yahoo.com> wrote in message
news:lkqm80d435a54qmoi...@4ax.com...
AChrist787
a hard life, but it's also been a very very interesting and
>adventurous life! And I've been blessed in the winter of my life to have at
last found a life partner who I adore and who treats me like
>I'm the most special and precious person alive; a man who is one of the
kindest, most thoughtful, patient and caring men I've ever met.
>What matters most to me now is not long years ending up in a convalescent
home, but a few QUALITY years in the time left to me.
>IOW, I do not fear death. What I fear most is living in misery every single
day until that time comes.<
Hi Kitt,
The above paragraph touched me more than I can tell you as I to have found
someone and I truly do understand both the joy and the peace that relationship
gives you. I also understand the inability to take narcotics, albeit for
different reasons than yours.
I would give the MTX a try, but as others have counseled you, the injectable
form only. It is so much easier on the entire body, IMHO. What do you have to
lose by trying it?
In answer to your question about side effects...mine were icky at the
beginning, but they do lesson, considerably. Please don't give yourself a time
limit, but try to take it a day at a time instead. It takes a bit for MTX to
kick in and get going. I have found that if I take my shot at night and drink
a lot of water the day of my shot, I do much better with it. I still,
occasionally, have a problem with the fatigue that comes with any form of
chemo, but that only happens once in a while. I just plan on staying home on
Mondays and if I have a problem, I sleep it off.
You are one of the most courageous women I know and you have so much yet to
give and to receive. Don't you be giving up on us. Chronic pain wears on you
and takes it's toll, both on you and the person who lives with and cares for
you. No one knows that better than I do. I know that for the past couple of
months there have been times when Mike has had to wonder why the hell he wanted
me in the first place. I guess, for me, I'm gonna keep taking the nasty meds,
try to live as normal a life as possible, and damn the torpedoes, full speed
ahead.
God Bless.....Anne
Caroline Marold
I for one, am very proud.
I might add that you need to speak with your RD and let him know that
you are at the end of the road. That you need to make things so that
each day will have a sunny ray. Your partner sounds like that is your
basic sunshine and that is a great thing.
I am on 6mg of pred and continue to try to get it lower but I am also on
Evista daily and Actonel [like Fosemax but a lower dose] once a week.
Plus I take 1500mg of calcium daily to help stop bone loss. Those two
[Evista and Actonel] are both for rebuilding bone which the prednisone
takes away. So I can't live without the pred but I do the best I can to
keep it from ruining me.
You might also ask your doctor about platform crutches or some other aid
like that which will not continue to put so much pressure on your hands.
If the RD doesn't have ideas on that, then an OT should. He can send you
to one if need be. Also, be sure to tell your RD that you need to see
him at least once a month until you are finally stable. Waiting for
three months is just wrong when you are in so much pain. After all, the
man works for you and you may have to remind him of that. :)
I am so glad you posted. You are a strong lady and one who now will be
prayed for everyday. Let us be your strength on days when you just don't
have it yourself. Vent, whine or cry here anytime you need to do so.
Someone is always here. Keep us posted.
Duckie
Lady K wrote:
--
_('>
(_<_)
_
_('< -quack
(_<_)
_
__('< *QUACK!*
<_{__)
_('< "|,,|_"
(_<_)
_('< "AFLAC!"
(_<_)
Gwen Love
age, but I know that at my age (75) being comfortable and able to function
would be much more important than living longer trying to get the disease
under control. I'm not even sure I would take chemo if I had cancer. But
this is a decision only you and your LO are in a position to make. My
prayers will be with you daily, and whatever you decide, I hope it will
work out beautifully for you.
Gwen
--
***************************************************************************
************************
"Lady K" <lady...@yahoo.com> wrote in message
news:lkqm80d435a54qmoi...@4ax.com...
Nann Bell
i've been thinking about you, having realized we hadn't seen you around here
for some time. I can't offer much more advice about the mtx than others
already have. Mary Z had lots of good comments. My side effects were fairly
mild and they did improve over time. They'd resurface briefly with each dose
increase, but subsided again after a week or two.
I certainly understand you desire for quality of life over quantity. I think
that is why all of us are willing to take potentially risky medications in
order to have better days. That's why so many of us wrote the FDA when Ralph
Nader's group tried to get Arava banned! I sometimes worry about the
emotional pain an early death would give my husband, but I know he also
prefers quality of life for me over quantity. Still one hates to cause pain
for someone who has been so invaluable in making life good. (though of
course my physical pain also pains him, so we're once again back to choices)
Is there any chance of getting to a good pain clinic? They do have other
tricks up their sleeves than just narcotics. They might be able to find
something that helps more with the pain. You deserve everything available to
make your days easier and to make it more possible to enjoy what you have.
You are in my thoughts and prayers.
--
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare
Squirrely
Thank you for the prayers and thoughts.
Oh man, the septic, UTI, heart attack sounds horrible.
Oh shoot, Raynauds, COPT, Asthma, and the RA.
You are really over the 3 disease limit. I think you need to go the head of
the return line and get rid of some of those. It is a long line here but I
am sure we will give you cuts so you can get ahead in the line. ;-)
Carpal tunnel, tarsal tunnel, and FMS too.
Oh I feel for you and I hurt for you. My heart goes out to you. To think I
moan and groan about my stuff.
I hurt just reading your post and I am only on page 2 of 4 so far.
I am so glad to hear about a wonderful man being in your life. So I can
understand your wanting to have a few quality years in life.
I am sorry I didn't have any advice, ideas or thoughts for you. But I did
want to know that right now I am hugging you over cyberland and I am not
going to let go. I will have you in my prayers and thoughts. I feel for you
so much.
When I read posts like this I feel so blessed and it shows me that yes it
can be worse. I wish you were not so bad off like that. I hope something
will work for you so you can have some kind of decent life.
Know that you are in my thoughts. Hugs and TLC to you. I know lots of others
here that are on those meds will help you out.
--
Love and hugs to all
Good thoughts coming your way too.
Squirrely Jo
"Lady K" <lady...@yahoo.com> wrote in message
news:lkqm80d435a54qmoi...@4ax.com...
Lady K
<kell...@hotmail.com> wrote:
>((((Kitt))))
>
>Was wondering about you just the other day and hoping you were well. I'm so
>sorry that you're not. I wish I had some magic words of wisdom but all I
>have is this giant cyber hug.
>
>I'll hope for a miracle for you and for more pain-free days ahead. You have
>to do what is right for you and find the joy in life as often as possible.
Hi Kelly! Thank you, my dear, for your kindness. How are things up
in your neck of the woods? From what I've been seeing on The Weather
Channel, you had a rather harsh winter this time.
Kitt
Lady K
<hrstone@swbell..net> wrote:
>Hi Kitt, Thank you for your story. I just want you to know that there
>are people here that are going to pray for you and your condition every day.
>I know you are tired of the struggle and the strength it takes to just do
>simple things but you have good doctors and a plan to make things better.
>Some days a person just has to keep putting one foot infront of the other as
>we try to make it through the day.
>in my prayers
>Harv
Thank you for your kindness and prayers, Harv. And yes, you're right,
about some days all one can do is just keep putting one foot in front
of the other. I know it, and keep on trucking most of the time. But
this time the 'new med to try' just seemed to add insult to injury in
the misery department, and I let it get to me. Not good, but I can do
better, and will.
Kitt
Lady K
have recommended the injectable MTX, and I'll be talking to my
RD Tuesday about it. Fortunately he works closely with my primary
doctor and I have an appointment to see her on Thursday. So it might
expedite things for her to write the script for me since he lives in
another state and only commutes to the UP monthly.
There's some truly wonderful wildlife and wilderness areas here, but
living so rurally can definitely have drawbacks. <grin>
Kitt
On Sun, 25 Apr 2004 04:55:19 -0400, Joan Carter <spa...@softhome.net>
wrote:
Lady K
questions. :)
On Sun, 25 Apr 2004 13:34:02 GMT, Di <dab...@optofline.com> wrote:
>Kitt, I really don't know what to say, other than my heart goes out to
>you. My disease, PA, isn't very aggressive, and Enbrel is keeping it
>well in check. I do take low dose pred every day; have been for a few
>years. I also take Miacalcin and calcium to keep the bone loss in
>check. But, every time I try to go off the pred, I flare. I now take
>4mg of Medrol every other day, alternating with 1/2 tab, or 2mg Medrol.
>That's equivalent to 2.5-5 mg of Prednisone. I so much want to go off.
>Maybe some day.
Di, thank you for taking the time to respond about your PA and
experiences with it and your meds. And for your kind thoughts for me.
I have a few questions, so I'll try to be clear about which ones I'm
asking for me, and which ones for my friend.
About the Prednisone: I'm still seriously considering taking 2.5-5
mg. per day with the Humira and pain killers if the side effects of
the MTX don't ease up. My question is, how long have you been on this
low dose of Prednisone, and have you had any negative long-term side
effects from it, like weight gain or a moon face, that sort of thing?
>I also take low dose MTX, 7.5mg/week. Some weeks, it's not a big deal.
>Other weeks, it decks me with fatigue and migraines. From what I've
>read here, hydration is a big player in how you respond. So, on the
>days you take the MTX, make sure you drink adequate water. Also, I've
>doubled my Folic Acid on the day of my MTX, per my RD's recommendation.
>Again, sometimes it works, sometimes not.
My RD has started me on 15 mg/week of MTX, and hinted at bumping that
up higher if that dosage doesn't have the desired effect. I dread to
think what the side effects would be at a higher level as I, too, am
getting extreme fatigue and headaches (thankfully not migraines) along
with the ugly fever blisters. Fortunately the blisters are easing up,
thanks to the recommendations here. The L-Lysine and extra Folic Acid
have helped a lot. And I've increased my water intake.
I've a question about the MTX in treating PA, for my friend. My
friend was Dx'd about six months ago with PA and was given Relafen
only to treat it as it was limited to his hands. He also was referred
to a dermatologist for treatment of the psoriasis. And I was
wondering how far along you were in the progression of the PA before
they put you on Enbrel and MTX? Did the Enbrel have any positive
effect on your swelling?
[...]
>I agree with you, though your philosophical dilemma rings loud and
>clear. At this point, quality of life is more valued than quantity. I
>say go for the MTX. Make sure you drink water and take folic acid.
>Take the injectible MTX, as people do have better results relative to
>side effects. Give it this attempt. You do owe it to yourself this
>time. I think you may always be wondering, if you don't.
This is a very good point. I think I would always be wondering if we
hadn't tried the MTX. Then again, if it in any way shows up in the
liver panels as having an adverse effect I'll be off it immediately
regardless. I need to keep my liver healthy just so I can take my
other meds! <grin>
>You're a tough lady, Kitt. So hang tough, and keep us posted.
Why thank you, Di. That was very thoughtful of you to say so. Now I
just need to keep reminding myself of that for awhile until I get
through this rough spell. :-/
Kitt
Lady K
wrote:
>God I wish Larry were around to help here.
And so do I, dear. I think we all miss him still an awful lot.
>First I'd give the MTX a little time. Usually it is started at a low dose
>and slowly increased. You body should get used to it so the side effects
>will diminish. And as others have said, the injectable is the only way to
>go. There are a whold bunch of us who find a spot of belly fat to inject it
>into once a week. Just do it the night before the easiest day of the week
>for you.
Yes, this does sound like the best alternative to the pill form. And
I don't mind doing the injections with the Humira, so the MTX
shouldn't be a problem at all. In fact, when I just saw my RD and he
asked how the injections were going, I boasted that I'd gotten so good
at them that I wasn't even drawing blood any longer. And promptly
stuck myself wrong with the next injection and bled all over! lol!
>Sounds like you need to concentrate on what makes today and tomorrow
>liveable. Or at least what makes next week promising. And make sure you
>have a doctor that understands your goals.
You're right, of course. And yes, I'm very fortunate in that I have a
primary doctor, an Internist, who took the time with me to talk at
length of those goals. She supports me completely. Now I just have
to nail down my RD long enough to have a similar talk. He commutes
once per month from Duluth, a 3 1/2 hour drive from the clinic in
Ironwood (which is 45 minutes for me). We do not have the
demographics in this area to support all of the medical specialists we
need, so the hospital and clinic in Ironwood has arranged for them to
come in monthly for those who cannot drive to Duluth or Marquette (2
hours from me the other way). Consequently, they have to squeeze as
many people into one day as they can, and we only get about 10 minutes
to do a complete update and take care of business. Perhaps I should
make a special appointment with him for just that purpose, or maybe
even write a letter that he can read when he has some time in Duluth.
Thank you for your kindness, Jo. I appreciate it.
Kitt
Lady K
>kitt, how i wish i were there so i could give you a big, long, gentle hug! you
>didn't mention enbrel or remicade, but i suppose it's safe to assume you have
>tried them?
Oh Diane, thanks so much to you and everyone for the cyber hugs! I'd
love to collect some in person some day.
Enbrel and Remicade are probably not viable alternatives, according to
my RD, since they're also TNF @ inhibitors. His feeling is that while
some people might respond differently to different meds, in my case
the RA is so aggressive that it's moving faster than the meds can keep
up with. And it's highly probable that I might be even worse now,
from the physical evidence, and that the Humira is actually keeping
the RA in check enough so that it isn't a runaway case.
>i was one of those never able to tolerate mtx, but most people can so i would
>certainly go for it (the injections). you have hard a very hard row to hoe, and
>i'm glad you have a loving partner to help you through this. also glad you
>posted.
>take care,
Yes, I think it would be wise to switch to the injections. And I'm
very fortunate to have found Bob. He suffers with Myasthenia Gravis,
and has walked a similar path in his quest to bring the disease under
control, so he is completely understanding and supportive. Plus he
spoils me rotten, which helps enormously! :):)
Kitt
Lady K
wrote:
>So Humira didn't help at all? Did they try it one shot per week? How
>about Remicade did you try it? Sometimes a Biologic and mtx work
>better as a combo.
Hiya Mary! I see you're still careening down the rapids! :):)
Yes, we tried Humira bi-weekly for three months, then switched to
weekly. I've been on weekly injections since December, and as I
posted in another post, there's some indication that my RA would be
even more out of control without it, so we're keeping it up in
conjuction with the MTX and Plaquenil and low-dose Prednisone.
>I doubt I would have had much of a response to
>Remicade or Enbrel alone. You should also consider Arava in lieu of
>mtx it might be easier to take. If you continue with the mtx be sure
>to ask your Dr for injectable form and ask about leukavorin it works
>better for combating side effects of mtx. They give it to cancer
>patients as a rescue drug. You will probably need to get into the 20
>to 25 mg range of mtx before it is helpful. I hope you find something
>that works. -- MZ
I don't remember if Arava is an anti-inflammatory drug or not, but I'm
cursed with a bad allergy to all anti-inflammatory drugs. I get
horrible hives head-to-toe from them, and have been to the ER a couple
of times in the past for injections to get it under control.
I'm not sure I can tolerate the MTX at that high a dose, from the
preliminary reaction. Keeping my fingers crossed that the side
effects ease up enough. Already my hair has been falling out
noticably, after only just recovering from the last med that made it
thin so dramatically. Argh! <grin>
Thanks for your continued support! If you ever decide to tackle the
rivers here in the upper peninsula of Michigan, don't forget we have a
spare bedroom and hugs here waiting! :)
Kitt
Lady K
>I am so sorry to hear all that you are going through.
Hi Rose! Thank you for your kindness, I appreciate the thoughts and
suggestions.
>Insofar as teh mtx, like others have said, try to get teh injectable,
>take it at night, and ask for leucovorin rather than or in addition to
>flioc acid. Leucovorin is folinic acid and is used as a "rescue drug"
>so to speak, anywhere from 12 to 24 hours after the mtx. It helps
>with fatigue, nausea, prevention of mouth sores, and the like.
>
>I believe in my heart that there is something out there that will give
>you the quality of life you deserve.
>
>Like Diane, I wonder if you have tried remicade. Since it is usually
>given with mtx, perhaps this is one you have not tried.
The biggest hangup is that I've only got Medicare to cover medical
expenses, and were it not for the Humira patient assistant program
that my RD got me qualified for I wouldn't have had the opportunity to
try any of the tnf @ inhibitors.
But I'll definitely ask about the Leucovorin when I see my primary
doctor on Thursday, and thanks for mentioning it. I just hope it
isn't too expensive. :-/
Kitt
Lady K
<dada...@NeOaSrPtAhMlink.net> wrote:
>Hi Kitt,
>So sorry to hear of this trouble. Long term pain can sure take its toll.
>There are counselors who deal specifically with long term pain issues. Our
>hospital had a chronic pain support group for some time as well.
>Me? I guess I'd shoot for quality versus quantity. We each have to make our
>own decisions in this area though. Hope you find your answer soon.
Thank you kindly for your thoughts and suggestions. I'm definitely
going to look into some kind of pain management counseling, whatever
can be made available considering how rural we are. We only get into
Ironwood about once every two weeks, and must combine major shopping
in with doctors appointments and other errands. But I'm sure if there
is something available we can squeeze it in.
Kitt
Lady K
>Kitt,
>I understand exactly where you are coming from. There are so many new things
>with much better toxicity profiles in the works so it may be a matter of
>holding on.
Hi Melinda! As always, you, and everyone else, give wonderful support
and suggestions. I'm going to respond to your reply as thoroughly as
possible, as there are some good points here.
>I also get tacchy with many protocols including pred at over a microdose level
>so I can relate to that as part of the problem finding something that helps.
It's the most frustrating part of all, in addition to a bad allergy to
all anti-inflammatory drugs. Naproxin, Naprosin and the others, plus
Ibuprofen....I don't dare take any of them. And the tacchy is bad
enough that my BP plummets and I have to get immediate medical care
when it happens, which fortunately hasn't happened for awhile. I keep
Cardizem on hand, with my Cardiologist's approval, and once every week
or two when I have those initial signs of irregular heart beats, I
take it. That solves the problem before it becomes serious.
>Of course everything I am going to write is both projection from my own
>experience and experience working with my chronic pain patients so forgive me
>if I misread any of your issues.
Nothing to forgive, my dear. Your suggestions and thoughts are more
than welcome, in whatever context. :)
>It is difficult to even be able to figure out what your options are without
>being able to get a little headspace from both your pain and the complexity of
>your physicality. Can you access acupuncture where you are living now?
>Acupuncture can help provide both amazing pain relief but also, because
>needling helps release serotonin, it can help with a sense of well being that
>might give you the break you need to buy you time to find a protocol that
>works. In addition, acupuncture will help support your liver if you do MTX
>injections.
Acupuncture has never worked for me, probably because I have too many
neurological problems going on as a result of thinning disks and
carpal tunnel syndrome in one wrist along with serious tarsal tunnel
in both ankles. The badly inflamed tendons and ligaments that are
under attack are simply stressing my whole body out in every way.
>Have you tried a tens unit? TENS can also help break up the level of pain you
>are in and usually doesn't set off that tacchy response that pain meds do.
Wow, I didn't know they had developed TENS to the point that it could
be used for other than back pain! I'll definitely ask my doctor about
it this Thursday.
>I think I would also look into finding a therapist who deals with the issues of
>chronic illness (specific training which is much different from the usual MFCC
>therapy training). Chronic pain therapists can help you sort out quality of
>life issues and provide that soft place to land that I need at least once in a
>while.
Something else that I'll definitely look into, thanks, although remote
living will make this difficult for other than bi-weekly appointments.
>I know these are Band-Aid suggestions but if I am reading this correctly, you
>are at the end of your psychological and physical rope, a place we all know
>only too well. At that point there has to be something that give you the
>little break you need to make the decisions you are discussing with absolute
>clarity.
Yep, I'm at the end of my rope, although I can honestly say it's not
the first time. And yes, from past experiences I know that what Harv
says works, just keep putting one foot in front of the other until it
passes and I'm not feeling so miserable and can think more clearly.
But it's just that even my feet hurt like hell right now! lol!
No, seriously, I think I really needed to get my butt in here a lot
sooner. My problem is that I've this problem with talking about
anything negative happening. Too many of my casual friends have gone
away because they couldn't stand seeing me, a tough maverick, being
brought to my knees by a stupid disease. :-/ So when I'm hurting most
is when I go the most quiet, rather than make others uncomfortable.
Dumb, dumb, because that's the last thing that happens with this
group. But to be brutally honest with myself, I've also always
thought of myself as a Rock, and to admit weakness is a dreadful blow
to my ego. Needless to say, Kitty was one of my heroes.
>Again since you do seem to be in such a good relationship right now, you just
>may need to hang on until the new drug hits the market (check out AI as they
>have some great info on the new stuff coming up-I have researched some of this
>in detail and I who am allergic to everything, am optimistic). There are whole
>new processes of management just a short time away, not just different twists
>on the TNF blockers.
>
>You have my love, respect and prayers and if you ever want me to do research
>for you finding an acupuncturist or chronic pain therapist, timelines for new
>protocols, or even something as simple as making you a hypnosis tape, you can
>also have my phone number.
I'm curious about other "protocols". Remicade, Enbrel and Humira are
simply TNF @ inhibitors, and nothing more. They do nothing to slow
the disease down, but they do treat the symptoms of the disease quite
well for most people. It's the progression that's out of control
right now, and we've been through the whole list of available
medications now for treating RA, including antibiotic therapy.
The only time I've been completely symptom free, and the disease went
into remission, was when I was hospitalized with the infection that
went septic. In the hospital the infection was treated with Levaquin.
When I begged my RD to continue me on it afterwards he couldn't,
legally, do so, as it has not gotten approval from the FDA for
treating RA. It's only in the trial/testing stages right now for
that, and unfortunately the trials are going on in Philadelphia, much
too far for commuting to be a volunteer. Damned frustrating!
Thank you ever so kindly for your offer for the support and hypnosis
tape! I've been trying to use music for relaxation, have some
wonderful stuff. Right now even that's hard to do, I'm have such
misery from the MTX and RA. Heck, it's hard to even put headphones on
since my skin frequently seems to be on fire and I get the most
maddening crawling sensation all over, especially my face and scalp,
and feel that scraping my skin off is the only answer! Gah! Wouldn't
that make a bloody mess! lol!
Well look at that, the lady's getting her humor back! :):):)
Kitt
Lady K
<bdta...@verizon.net> wrote:
>Lady Kitt - I was getting to that point because the MTX made me extremely
>nauseated. Then my RD put me on the injectible MTX. WHAT a difference!!
>So see if you can start on the injectible. The side effects are minimal
>that way. It has really made a difference in my life.
>
>You are in our prayers!
>DeeTee
Yup, seems like the injectible MTX will be the way to go, thanks! And
thank you ever so much for your prayers and kind thoughts. You have
no idea how much everyone's support has helped me get a grip right
now.
Kitt
Lady K
story!!! I can't tell you how much that has given me some serenity.
I'm not a quitter, so I'll give the MTX and other things a chance.
But I'm afraid that the clock is ticking for me, and I may not have
too many years left. The inner pressure I'm feeling right now is that
those years should be the best I can make them, and that's damned
difficult anymore because of the cocktail of drugs I take. In my
heart I know that if there is no significant improvement in the three
months until I see my RD next, then I'm going to make the same choice
that your father did. And it gives me peace of mind to know that I
can do that and be at peace with the decision, like he did.
Thank you, Sweetie!
Kitt
On Sun, 25 Apr 2004 14:01:12 -0400, "donnah" <infe...@bellsouth.net>
wrote:
Lady K
<pos...@strato.net> wrote:
>Wishing you better days no matter what you decide.
>
>Gentle Hugs from Rosie
Thank you very much, Rosie. That means a great deal to me.
Kitt
Lady K
wrote:
>Hi Kitt,
>
>The above paragraph touched me more than I can tell you as I to have found
>someone and I truly do understand both the joy and the peace that relationship
>gives you. I also understand the inability to take narcotics, albeit for
>different reasons than yours.
Then we are both blessed, and I'm truly happy for you as well, Anne!
>I would give the MTX a try, but as others have counseled you, the injectable
>form only. It is so much easier on the entire body, IMHO. What do you have to
>lose by trying it?
>
>In answer to your question about side effects...mine were icky at the
>beginning, but they do lesson, considerably. Please don't give yourself a time
>limit, but try to take it a day at a time instead. It takes a bit for MTX to
>kick in and get going. I have found that if I take my shot at night and drink
>a lot of water the day of my shot, I do much better with it. I still,
>occasionally, have a problem with the fatigue that comes with any form of
>chemo, but that only happens once in a while. I just plan on staying home on
>Mondays and if I have a problem, I sleep it off.
This sounds like a very workable solution! Since I'm officially
"retired" now, at only age 54 <grin>, I can certainly make time work
for me in that manner. As it is, I'm taking the MTX on the same day
as the Humira so I won't forget either. Surprisingly, the Humira also
makes me fatigued, so sleeping both off at the same time won't cost
anymore time.
>You are one of the most courageous women I know and you have so much yet to
>give and to receive. Don't you be giving up on us. Chronic pain wears on you
>and takes it's toll, both on you and the person who lives with and cares for
>you. No one knows that better than I do. I know that for the past couple of
>months there have been times when Mike has had to wonder why the hell he wanted
>me in the first place. I guess, for me, I'm gonna keep taking the nasty meds,
>try to live as normal a life as possible, and damn the torpedoes, full speed
>ahead.
>
>God Bless.....Anne
Oh Anne, thank you for your sincere kindness and wonderful
suggestions. I think I needed to be reminded that I'm a fighter, not
a quitter. And that if I dig a little deeper there are reserves yet
that I've not tapped. There's so much of life's adventures yet for me
to enjoy that I'm afraid I was getting into an overwhelming state of
panic that I'd miss them all due to the "cure" being as devastating as
the disease. :-b
If there are any birdwatchers in the group, one of my greatest joys
has been to finally have some time to enjoy that passion! My career
demands for the better part of 30 years left me precious little time
to be anything but a casual birder. But now, since moving to the UP
here, in less than two years I've gotten 17 lifers! Wow! That's as
much as the ten prior years. <grin> Plus the wilderness areas here
are so lovely that we're planning a few field trips. It generally
takes a lot out of both of us because of our diseases, but heck, we
can crash the next day if we have to. And the Bald Eagles are
nesting, and may even have eggs by now!
Hehe, talk about "off topic". LOL!
Kitt
RoseB
wrote:
>But I'll definitely ask about the Leucovorin when I see my primary
>doctor on Thursday, and thanks for mentioning it. I just hope it
>isn't too expensive. :-/
Shoot and double shoot! It is expensive. Gee whiz/ I don't know much
about how the private insurance system works. I think leucovorin
definitely would help, but it is expensive. I was trying to determine
the cost but it is difficult to compare given the differences in price
and hte differences between the Canadian and American dollar.
I wish there were something I could do to help.
Lady K
<duckieX...@yahoo.com> wrote:
>Just read all the posts everyone wrote. We have one great group here and
>I for one, am very proud.
And well you should be! I may not have contributed much lately in the
way of support, but if there are any lurkers out there who are also
hurting badly, perhaps they will take the opportunity to speak up as
well because they'll never find a more caring and supportive group of
people.
>I might add that you need to speak with your RD and let him know that
>you are at the end of the road. That you need to make things so that
>each day will have a sunny ray. Your partner sounds like that is your
>basic sunshine and that is a great thing.
As I mentioned in another post, I think I'll have to make a special
appointment with my RD to just sit down and have a good talk about the
"big picture". And yes, Bob is the light of my life, literally. He
has given my life new meaning, and purpose, and even cooks for me as
well as greeting me in the morning with a cheery face and fresh brewed
coffee. <:-D
>I am on 6mg of pred and continue to try to get it lower but I am also on
>Evista daily and Actonel [like Fosemax but a lower dose] once a week.
>Plus I take 1500mg of calcium daily to help stop bone loss. Those two
>[Evista and Actonel] are both for rebuilding bone which the prednisone
>takes away. So I can't live without the pred but I do the best I can to
>keep it from ruining me.
>You might also ask your doctor about platform crutches or some other aid
>like that which will not continue to put so much pressure on your hands.
>If the RD doesn't have ideas on that, then an OT should. He can send you
>to one if need be. Also, be sure to tell your RD that you need to see
>him at least once a month until you are finally stable. Waiting for
>three months is just wrong when you are in so much pain. After all, the
>man works for you and you may have to remind him of that. :)
>I am so glad you posted. You are a strong lady and one who now will be
>prayed for everyday. Let us be your strength on days when you just don't
>have it yourself. Vent, whine or cry here anytime you need to do so.
>Someone is always here. Keep us posted.
>Duckie
You're absolutely right, my dear. I need to stop trying to be the
"rock" and get myself in here at least once a week. It's hard to
type, but if I just take my time and then go online and post
everything all at once, I seem to be able to keep up.
Thank you for your kind thoughts and suggestions, Duckie! May I ask a
personal question? You were kind enough to explain your last name
years ago, and now I'm curious about your nickname. Are you as
"cheeky" as your nickname suggests? <giggle>
Kitt
Lady K
wrote:
>Kitt, it is easy to see why you feel as you do. I have no idea of your
>age, but I know that at my age (75) being comfortable and able to function
>would be much more important than living longer trying to get the disease
>under control. I'm not even sure I would take chemo if I had cancer. But
>this is a decision only you and your LO are in a position to make. My
>prayers will be with you daily, and whatever you decide, I hope it will
>work out beautifully for you.
>Gwen
You are very kind to send such caring thoughts, my dear! Thank you
from my heart. And I like to tell people that my spirit is 25 years
young, my body is telling me that it's 80 years old instead of 54, but
that my soul is as old as the hills. ;-}
As a humorous aside, I used to go to Yahoo! to play backgammon online.
But there were too many "pickup artists" most of the time, and it got
to be irritating to have them demanding a/s/l (age/sex/location) all
the time. Finally I came up with a pat answer:
"Alien female, 101 lifetimes and counting, this lifetime here on
Earth!" That usually resulted in a good laugh followed by an
enjoyable game of backgammon, or a forfeited game adding points to my
overall score. LOL!
Kitt
Lady K
<hanbell...@earthlink.net> wrote:
>(((((((((Kitt)))))))))))
Hi Nann!
>i've been thinking about you, having realized we hadn't seen you around here
>for some time. I can't offer much more advice about the mtx than others
>already have. Mary Z had lots of good comments. My side effects were fairly
>mild and they did improve over time. They'd resurface briefly with each dose
>increase, but subsided again after a week or two.
I'm so glad to hear that the side effects can improve. I was
literally ready to quit the MTX until I read the responses here.
>I certainly understand you desire for quality of life over quantity. I think
>that is why all of us are willing to take potentially risky medications in
>order to have better days. That's why so many of us wrote the FDA when Ralph
>Nader's group tried to get Arava banned! I sometimes worry about the
>emotional pain an early death would give my husband, but I know he also
>prefers quality of life for me over quantity. Still one hates to cause pain
>for someone who has been so invaluable in making life good. (though of
>course my physical pain also pains him, so we're once again back to choices)
Oh how well you have hit the nail on the head! These are the toughest
choices I've ever had to make in my life, I think. :-/
>Is there any chance of getting to a good pain clinic? They do have other
>tricks up their sleeves than just narcotics. They might be able to find
>something that helps more with the pain. You deserve everything available to
>make your days easier and to make it more possible to enjoy what you have.
>
>You are in my thoughts and prayers.
Thank you, my dear! Your prayers and thoughts mean a lot, and you
have always been so helpful and supportive.
Oh, and BTW: Hazy says hello! ;-D
Kitt
Jo Firey
"Lady K" <lady...@yahoo.com> wrote in message
news:9ser801slqo2iua0d...@4ax.com...
> Hi Di, I'm responding to most of your reply because I have some
> questions. :)
>
>
> up higher if that dosage doesn't have the desired effect. I dread to
> think what the side effects would be at a higher level as I, too, am
> getting extreme fatigue and headaches (thankfully not migraines) along
> with the ugly fever blisters. Fortunately the blisters are easing up,
> thanks to the recommendations here. The L-Lysine and extra Folic Acid
> have helped a lot. And I've increased my water intake.
>
>
15 mg a week of MTX is double what I started at. A lot of RD's start at a
lower dose, say 7.5 for a few weeks as easing into it seems to help avoid
the side effects. I had worse mouth sores from that than I get now at three
times that much.
Jo
Lady K
You -have- helped, immeasurably, just by being there for me and
helping to prop me up when I needed it most.
{{{{{{{Rose}}}}}}}
Kitt
Nann Bell
am on mtx and partly because I'm just a buttinski. :)
On Mon, 26 Apr 2004 22:36:59 -0400, Lady K wrote
(in message <9ser801slqo2iua0d...@4ax.com>):
> My RD has started me on 15 mg/week of MTX, and hinted at bumping that
> up higher if that dosage doesn't have the desired effect.
That is a really high initial dosage of mtx. It provides another clue to
your severe side effects. Most times they start you at 7.5 mg/week for a few
weeks to see how you do and then gradually increase it by 2.5mg at a time.
Your RD may be one of those who chooses to start at 15 or maybe he was just
really worried about how you're doing, but it is a bigger shock to the body
to start at 15.
I dread to
> think what the side effects would be at a higher level as I, too, am
> getting extreme fatigue and headaches (thankfully not migraines) along
> with the ugly fever blisters. Fortunately the blisters are easing up,
> thanks to the recommendations here. The L-Lysine and extra Folic Acid
> have helped a lot. And I've increased my water intake.
Fatigue was the big side effect for me and was the one that I said eased over
time for me. At first I'd sleep about 18 hours out of 24 after taking it. I
had to take the mtx at midday because I messed up my nightime sleep schedule
the least that way. Now I generally don't notice any difference in fatigue
after taking it.
Water is a biggie too. i never paid much attention to that because I usually
drink lots of water thanks to post-nasal drip (yucky stuff!). Then one week
I was really busy on mtx day. Had this horrible headache that just wouldn't
ease off. Finally after about 5 hours, the lightbulb went on and I
remembered the discussions about water around here. I immediately downed
about a quart of it! LOL Did the trick, I could feel my headache easing off
over the next hour. I'm really careful about that water now! If we're
travelling I carry a bottle in the car.
>
> I've a question about the MTX in treating PA, for my friend. My
> friend was Dx'd about six months ago with PA and was given Relafen
> only to treat it as it was limited to his hands. He also was referred
> to a dermatologist for treatment of the psoriasis. And I was
> wondering how far along you were in the progression of the PA before
> they put you on Enbrel and MTX? Did the Enbrel have any positive
> effect on your swelling?
PA seems to have an even wider range of severity than RA. Really mild PA can
be managed successfully with NSAIDs for a while. Mine began quite
aggressively, then for unknown reasons backed off for a number of years.
(This is more commmon in PA than in RA, though not everyone is so lucky!)
During that time, NSAIDs were all I took and all I needed as no erosions
developed.
Then everything went wild again. They started me on the new NSAIDs at higher
doses (I'd been taking OTC ibuprofen for a while). After a couple of
changes, we got things controlled for a couple of months. It broke out
again. We added Plaquenil and I had a surprisingly fast response. That only
lasted about 5 months though. Then we added sulfasalazine. NO response.
Added mtx (now about 18 months from the point where it went wild again). MTX
helped significantly for several months, then things got worse again. Took
away the plaq and sulfasalazine and added Arava. Got lots better, for about
6 months. Eventually diagnosed with fibro as well, but in the past these
fibro type symptoms always eased with new DMARDs. Haven't gone to Enbrel yet
for several reasons, primarily my current semi-bozo RD and insurance issues.
All the DMARDs I have been on helped significantly with the inflammation and
swelling and therefore with the pain. Mtx helped a bit with my psoriasis as
well, making it more readily responsive to the topicals I was using. When we
added Arava, my psoriasis cleared completely. It was fairly mild psoriasis,
but after 30 years it was a relief to have it clear for a while! (especially
the genital Ps!) Many people with Ps and/or PsA have had great success with
mtx and many have had success with Enbrel. Both are good options.
There is a psoriasis newsgroup alt.support.skin-diseases.psoriasis It's
pretty good. Some crap appears there, but not too much. Much quieter group
than this one! Also, your frined might want to check out the National
Psoriasis Foundation (online at psoriasis.org). You can join for as little
as $1/year. They do a wonderful job of disseminating information and
supporting research for both Ps and PsA. They even have an "It worked for
me" column where people report anything that helped them, no matter how out
of the mainstream it is, in case it helps someone else.
Heh. I guess I've run on for a bit. I empathize with your isolation issues.
We may be moving up near Alpena in a few months. Hopefully I can find a
decent PCP up there, but I'll have to drive for an RD, at least 100 miles.
Just trying to decide whether I'll go west or south! South is further, but
there are more other things I could combine with the trip. We'll see.
My brother was diagnosed with myasthenia gravis about 12 years ago and I
learned a lot about the disease at that time. Fortunately, my bro's symptoms
went away after a few months and they still aren't sure what it was. I still
remember how frustrating and frightening it sounded as a disease though. I
think it is wonderful that you and your husband found each other to help one
another. Do what you can to enjoy the time you have and to get out there for
birding!
Harvey R. Stone
> I don't remember if Arava is an anti-inflammatory drug or not, but I'm
> cursed with a bad allergy to all anti-inflammatory drugs. I get
> horrible hives head-to-toe from them, and have been to the ER a couple
> of times in the past for injections to get it under control.
Arava in not a NSAID. It is in the same class as Methx but slightly
different. Both can make your hair fall out (grapeseed extract) and folic
acid helps both with side effects.
Harv
Ps,,, both are hard on the liver but I have read here where some people take
both. Talken bout very aggresive inflam.arth. here.
Mary Z
wrote:
>I don't remember if Arava is an anti-inflammatory drug or not, but I'm
>cursed with a bad allergy to all anti-inflammatory drugs. I get
>horrible hives head-to-toe from them, and have been to the ER a couple
>of times in the past for injections to get it under control.
It is not an anti-inflammatory drug it is a DMARD similar to MTX only
for some folks it has less side effects and works better. Ask your
Rheumatologist about it. -- MZ
Visit my website:
http://www.mzuschlag.com
Harvey R. Stone
> I'm curious about other "protocols". Remicade, Enbrel and Humira are
> simply TNF @ inhibitors, and nothing more. They do nothing to slow
> the disease down, but they do treat the symptoms of the disease quite
> well for most people. It's the progression that's out of control
> right now, and we've been through the whole list of available
> medications now for treating RA, including antibiotic therapy.
The good news is that they have proven that damaged joints are slowly
repairing over a two year period with Enbrel. I do not see why the other
anti-tnfs would not do the same.
I am going to give you my opinion now which has no medical training
behind it and worth the same as the training :-).... Please do your best
to get your RD to give you a 60 to 100cc shot of steroid in your rear end.
I think you are taking a good deal of medicine and need that kind of boost
to let them do their job. I would also look into getting better sleep and
that may need prescription help. Our bodies do a great deal of the healing
while we sleep. JMO Sweet dreams...
Harv
kelly
I am not sure where you are getting the idea that remicade, enbrel and
Humira are not slowing the disease and are only tgreating the symptoms.
These and Kineret are doing more than most of the other meds on the market
now to slow and even halt (albeit a medicated remission) than we have ever
had before. They are not simply treating the symptoms.
Kelly
donnah
my prayers are with you and Bob...
Dad isn't a quitter, either, but he did reach the point that he wanted
his remaining years to be better...he wanted to fight a different
fight and that new fight was making the most of every day instead of
always, but always, being weak and sick.
Kitt, he also has heart problems and the combination of that, the RA,
and the combined drugs...well, you are certainly aware of the
problems!
gentle hugs for you and Bob!
donnah
"Lady K" <lady...@yahoo.com> wrote in message
news:3njr805ke1qbq47s4...@4ax.com...
Harvey R. Stone
> It is not an anti-inflammatory drug it is a DMARD similar to MTX only
> for some folks it has less side effects and works better. Ask your
> Rheumatologist about it. -- MZ
>
>
And I bet we could dance really well together tooo. LOLOL
Harv
Aina Nilsen
"Lady K" <lady...@yahoo.com> skrev i melding
news:9ser801slqo2iua0d...@4ax.com...
> Hi Di, I'm responding to most of your reply because I have some
> questions. :)
>
> On Sun, 25 Apr 2004 13:34:02 GMT, Di <dab...@optofline.com> wrote:
>
>
snip
> About the Prednisone: I'm still seriously considering taking 2.5-5
> mg. per day with the Humira and pain killers if the side effects of
> the MTX don't ease up. My question is, how long have you been on this
> low dose of Prednisone, and have you had any negative long-term side
> effects from it, like weight gain or a moon face, that sort of thing?
>
I'm mostly a lurker, but since I can give you my experience with this, I'll
tell you.
I've been on Prednisone since fall of '99, starting at 10mg I got it down to
5 mg and then down to 5 mg and 2,5 mg every second day. It seems impossible
for me to get any lower and my RD here in Norway doesn't seem to conserned
about it. I'm also on MTX, 15 mg/week, and I don't have much side effects
any more. I can get a bit tired, and I also drink water like the others, and
every now and then I get a bit loose bowel movments, but not really bad. My
doctor also has me on 100 mg Sandimmune Neoral a day, this was the drug that
seemed to stop most of the activity when the MTX and Prednisone didn't keep
me stable.
I wish you all the best!
Aina
the lurker in Norway
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.668 / Virus Database: 430 - Release Date: 24.04.04
Harvey R. Stone
> >
>
> I'm mostly a lurker, but since I can give you my experience with this,
I'll
> tell you.
> I've been on Prednisone since fall of '99, starting at 10mg I got it down
to
> 5 mg and then down to 5 mg and 2,5 mg every second day. It seems
impossible
> for me to get any lower and my RD here in Norway doesn't seem to conserned
> about it. I'm also on MTX, 15 mg/week, and I don't have much side effects
> any more. I can get a bit tired, and I also drink water like the others,
and
> every now and then I get a bit loose bowel movments, but not really bad.
My
> doctor also has me on 100 mg Sandimmune Neoral a day, this was the drug
that
> seemed to stop most of the activity when the MTX and Prednisone didn't
keep
> me stable.
>
> I wish you all the best!
>
> Aina
> the lurker in Norway
>
>
And well said Aina,,,, Welcome to out of the bushes of ASA.
Harv
Caroline Marold
dancing in costume. Do you remember the song Running Bear loves little
White Dove?
http://www.arthritisinsight.com/community/photo/page27.html
and scan down to the bottom right. See -- more like a duck really. :)
quack
Duckie
Lady K wrote:
....
> Thank you for your kind thoughts and suggestions, Duckie! May I ask a
> personal question? You were kind enough to explain your last name
> years ago, and now I'm curious about your nickname. Are you as
> "cheeky" as your nickname suggests? <giggle>
>
> Kitt
--
_('>
(_<_)
_
_('< -quack
(_<_)
_
__('< *QUACK!*
<_{__)
_('< "|,,|_"
(_<_)
_('< "AFLAC!"
(_<_)
Caroline Marold
are right. I did read where Remicade is repairing as well.
Duckie
Harvey R. Stone wrote:
> The good news is that they have proven that damaged joints are slowly
> repairing over a two year period with Enbrel. I do not see why the other
> anti-tnfs would not do the same.
> I am going to give you my opinion now which has no medical training
> behind it and worth the same as the training :-).... Please do your best
> to get your RD to give you a 60 to 100cc shot of steroid in your rear end.
> I think you are taking a good deal of medicine and need that kind of boost
> to let them do their job. I would also look into getting better sleep and
> that may need prescription help. Our bodies do a great deal of the healing
> while we sleep. JMO Sweet dreams...
> Harv
>
>
--
Caroline Marold
aggressive form of arthritis.
Duckie
kelly wrote:
--
Kelly Cobb
>
> Hi Kelly! Thank you, my dear, for your kindness. How are things up
> in your neck of the woods? From what I've been seeing on The Weather
> Channel, you had a rather harsh winter this time.
>
> Kitt
It was a strange winter, to be sure, but we have full-on spring here now. 85
yesterday, 65 today, maybe rain sometime later in the week. Good old PNW
weather...wish you were here to see it.
Kelly C.;o)
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.668 / Virus Database: 430 - Release Date: 4/25/04
Lady K
Hi Kelly,
Yes, I understand what you are saying, and that's a common
misconception about the TNF @ inhibitors, Humira, Remicade and Enbrel.
Those drugs, the TNF @ inhibitors, work to block the TNF alpha that is
produces by a short circuiting immune response. And yes, they
absolutely do retard the progression of joint destruction, and in many
cases stop it altogether.
But what the TNF @ inhibitors do not do is stop the disease or knock
it into remission, or even slow it down. The body is -still-
producing excessive TNF @. All the inhibitors are doing is
counteracting that production by blocking the TNF @'s attack on body
tissues. It is a blocking agent, and does not cause the body to
reduce the over-production of TNF @. Once the inhibitor is
discontinued the symptoms quickly resume because the production never
stopped.
That is unless some other drug like MTX or Plaquenil, etc., taken at
the same time, has kicked in to slow the disease down or knock it into
remission. (Not taking into account that there are some cases of
spontaneous remission, of course.)
So technically we're both right. :)
Kitt
Lady K
<hanbell...@earthlink.net> wrote:
>I'm answering some of your questions to Di, partly because I too have PA and
>am on mtx and partly because I'm just a buttinski. :)
Hehe, buttinski all you'd like, it's appreciated! ;-}
>That is a really high initial dosage of mtx. It provides another clue to
>your severe side effects. Most times they start you at 7.5 mg/week for a few
>weeks to see how you do and then gradually increase it by 2.5mg at a time.
>Your RD may be one of those who chooses to start at 15 or maybe he was just
>really worried about how you're doing, but it is a bigger shock to the body
>to start at 15.
Pretty much, my RD's approach at this point is to blast it with
napalm. <g>
>Fatigue was the big side effect for me and was the one that I said eased over
>time for me. At first I'd sleep about 18 hours out of 24 after taking it. I
>had to take the mtx at midday because I messed up my nightime sleep schedule
>the least that way. Now I generally don't notice any difference in fatigue
>after taking it.
For 24 hours after I take it I get headaches and bad fatigue, then it
eases up again, then starts again about two days before it's time for
the next dose. Weird.
>Water is a biggie too. i never paid much attention to that because I usually
>drink lots of water thanks to post-nasal drip (yucky stuff!). Then one week
>I was really busy on mtx day. Had this horrible headache that just wouldn't
>ease off. Finally after about 5 hours, the lightbulb went on and I
>remembered the discussions about water around here. I immediately downed
>about a quart of it! LOL Did the trick, I could feel my headache easing off
>over the next hour. I'm really careful about that water now! If we're
>travelling I carry a bottle in the car.
Yes, for the past two days I've been drinking lots of water like
everyone suggested, and it does make a difference. The headaches are
much duller, and the waves of nausea have lessened.
>PA seems to have an even wider range of severity than RA. Really mild PA can
>be managed successfully with NSAIDs for a while. Mine began quite
>aggressively, then for unknown reasons backed off for a number of years.
>(This is more commmon in PA than in RA, though not everyone is so lucky!)
>During that time, NSAIDs were all I took and all I needed as no erosions
>developed.
>
>Then everything went wild again. They started me on the new NSAIDs at higher
>doses (I'd been taking OTC ibuprofen for a while). After a couple of
>changes, we got things controlled for a couple of months. It broke out
>again. We added Plaquenil and I had a surprisingly fast response. That only
>lasted about 5 months though. Then we added sulfasalazine. NO response.
>Added mtx (now about 18 months from the point where it went wild again). MTX
>helped significantly for several months, then things got worse again. Took
>away the plaq and sulfasalazine and added Arava. Got lots better, for about
>6 months. Eventually diagnosed with fibro as well, but in the past these
>fibro type symptoms always eased with new DMARDs. Haven't gone to Enbrel yet
>for several reasons, primarily my current semi-bozo RD and insurance issues.
Sounds like you've been on the same program of trying everything there
is on the market. The hard part for me is the waiting 3 to 6 months
for each one to reach maximum efficacy, then finding it isn't working
and trying another or an increased dosage. My RD only sees me in
sound bytes so it's not like it's an agonizing process for him, but as
I've said before, I'm the one who has to bear up 24/7 in between
appointments, and each phase seems like a lifetime. I'm sure it's
been that way for you as well, from what you've shared.
>All the DMARDs I have been on helped significantly with the inflammation and
>swelling and therefore with the pain. Mtx helped a bit with my psoriasis as
>well, making it more readily responsive to the topicals I was using. When we
>added Arava, my psoriasis cleared completely. It was fairly mild psoriasis,
>but after 30 years it was a relief to have it clear for a while! (especially
>the genital Ps!) Many people with Ps and/or PsA have had great success with
>mtx and many have had success with Enbrel. Both are good options.
>
>There is a psoriasis newsgroup alt.support.skin-diseases.psoriasis It's
>pretty good. Some crap appears there, but not too much. Much quieter group
>than this one! Also, your frined might want to check out the National
>Psoriasis Foundation (online at psoriasis.org). You can join for as little
>as $1/year. They do a wonderful job of disseminating information and
>supporting research for both Ps and PsA. They even have an "It worked for
>me" column where people report anything that helped them, no matter how out
>of the mainstream it is, in case it helps someone else.
Excellent! And thanks for all the info, I'll pass it on to my friend.
:)
>Heh. I guess I've run on for a bit. I empathize with your isolation issues.
> We may be moving up near Alpena in a few months. Hopefully I can find a
>decent PCP up there, but I'll have to drive for an RD, at least 100 miles.
>Just trying to decide whether I'll go west or south! South is further, but
>there are more other things I could combine with the trip. We'll see.
I'm afraid that it won't be much more than a couple more years before
we'll be forced to move as well. As we each need to see more and more
specialists and/or get different kinds of therapy or need lab work and
x-rays, the commuting will take a toll. And more and more, being
nearer the "civilized" towns is looking to be a far more practical
approach, much as we hate to leave the country.
>My brother was diagnosed with myasthenia gravis about 12 years ago and I
>learned a lot about the disease at that time. Fortunately, my bro's symptoms
>went away after a few months and they still aren't sure what it was. I still
>remember how frustrating and frightening it sounded as a disease though. I
>think it is wonderful that you and your husband found each other to help one
>another. Do what you can to enjoy the time you have and to get out there for
>birding!
Thanks, Nann! I appreciate all your thoughts and suggestions
immensely. :)
Kitt
Lady K
<hrstone@swbell..net> wrote:
>
>
>
>> I don't remember if Arava is an anti-inflammatory drug or not, but I'm
>> cursed with a bad allergy to all anti-inflammatory drugs. I get
>> horrible hives head-to-toe from them, and have been to the ER a couple
>> of times in the past for injections to get it under control.
>
>Arava in not a NSAID. It is in the same class as Methx but slightly
>different. Both can make your hair fall out (grapeseed extract) and folic
>acid helps both with side effects.
>Harv
>Ps,,, both are hard on the liver but I have read here where some people take
>both. Talken bout very aggresive inflam.arth. here.
Okay, thanks. I'll do some searching and learn more about Arava.
Cost may be the prohibitive factor at this point, but hopefully I'll
soon qualify for the Medicare prescription discount program. I'm
borderline, though, as I worked too many years and qualified for a
level that puts me just above "poverty level", and one SS case worker
told me that I'm one of those unfortunate ones who falls into that
limbo ineligible category, too much SSDI, but not enough of it to
cover the medical expenses. :-/
Kitt
Lady K
wrote:
>(((Kitt)))
>my prayers are with you and Bob...
>Dad isn't a quitter, either, but he did reach the point that he wanted
>his remaining years to be better...he wanted to fight a different
>fight and that new fight was making the most of every day instead of
>always, but always, being weak and sick.
>Kitt, he also has heart problems and the combination of that, the RA,
>and the combined drugs...well, you are certainly aware of the
>problems!
>
>gentle hugs for you and Bob!
>donnah
Thanks muchly!! I'll be sure to deliver your hugs to Bob personally!
:):):)
Kitt
Lady K
Thanks for the suggestion, Harv! I'm allowed to do "prednisone
bursts" at my own discretion, and rather than a shot of steroids I'll
start doing a burst right away. That usually does a very nice job of
beating down things for a couple of weeks, and you're right, might be
just the thing I need right now for some physical relief.
Kitt
Lady K
Thank you ever so kindly for sharing your own experiences with these
drugs! It helps a lot to know that things might eventually settle
down, and that I might also be able to take low-dose Prednisone
long-term with very little serious side-effects.
Welcome to ASA!
Kitt
Lady K
<duckieX...@yahoo.com> wrote:
>Lol -- I got my nickname at the Ohio Gimpfest. We watched a video of me
>dancing in costume. Do you remember the song Running Bear loves little
>White Dove?
>http://www.arthritisinsight.com/community/photo/page27.html
>and scan down to the bottom right. See -- more like a duck really. :)
>quack
>Duckie
LOL! That was priceless! ;-D
Kitt
Lady K
wrote:
Thanks, Mary. I'll definitely ask him.
Kitt
Di
> Hi Di, I'm responding to most of your reply because I have some
> questions. :)
>
> On Sun, 25 Apr 2004 13:34:02 GMT, Di <dab...@optofline.com> wrote:
>
> >you. My disease, PA, isn't very aggressive, and Enbrel is keeping it
> >well in check. I do take low dose pred every day; have been for a few
> >years. I also take Miacalcin and calcium to keep the bone loss in
> >check. But, every time I try to go off the pred, I flare. I now take
> >4mg of Medrol every other day, alternating with 1/2 tab, or 2mg Medrol.
> >That's equivalent to 2.5-5 mg of Prednisone. I so much want to go off.
> >Maybe some day.
>
> Di, thank you for taking the time to respond about your PA and
> experiences with it and your meds. And for your kind thoughts for me.
> I have a few questions, so I'll try to be clear about which ones I'm
> asking for me, and which ones for my friend.
>
> About the Prednisone: I'm still seriously considering taking 2.5-5
> mg. per day with the Humira and pain killers if the side effects of
> the MTX don't ease up. My question is, how long have you been on this
> low dose of Prednisone, and have you had any negative long-term side
> effects from it, like weight gain or a moon face, that sort of thing?
Kitt, I had been taking 5 mg/day for about ...... I dunno....... a year,
maybe 1.5 years. Then about a year ago, my RD reduced the dosage to the
2.5 alternating with 5. I've tried to wean off that, but every time I
do, I flare. Then, with my fractured vertebra, the hip OA,
costochondritis, the list goes on, I just gave up and just maintain it
for now.
I do believe it has affected my bones. I have a T-score of -1.9, which
puts me in the osteopenia/early osteoporosis bone loss category. My
twin sister, who doesn't take pred, has a T-score of -1.1, which is
pretty good. I know there are other factors, like exercise, life style,
etc. that could affect bone loss, but I do believe it's the pred effect
for me.
As for weight gain/moon face, I think I'm kind of lucky. I do have some
extra "stuff" where my shoulders and neck meet, but not exactly what I'd
call a dowager's hump. I do not have a moon face, at all. And, I'm
about 25 lbs overweight, though I've lost over 40 lbs when I had the
gall bladder/adhesions surgery last year. I'm doing ok weight-wise.
>
> >I also take low dose MTX, 7.5mg/week. Some weeks, it's not a big deal.
> >Other weeks, it decks me with fatigue and migraines. From what I've
> >read here, hydration is a big player in how you respond. So, on the
> >days you take the MTX, make sure you drink adequate water. Also, I've
> >doubled my Folic Acid on the day of my MTX, per my RD's recommendation.
> >Again, sometimes it works, sometimes not.
>
> My RD has started me on 15 mg/week of MTX, and hinted at bumping that
> up higher if that dosage doesn't have the desired effect. I dread to
> think what the side effects would be at a higher level as I, too, am
> getting extreme fatigue and headaches (thankfully not migraines) along
> with the ugly fever blisters. Fortunately the blisters are easing up,
> thanks to the recommendations here. The L-Lysine and extra Folic Acid
> have helped a lot. And I've increased my water intake.
Saturdays are my MTX fatigue days. That's all there is to it.
Sometimes I get headaches; sometimes not. But, I always have the damned
fatigue. So, I hang out. Who cares if the vacuuming doesn't get done?
I live alone with my dog and two cats. They sure as shit don't care.
<g> So far, I've never had any mouth sores.
>
> I've a question about the MTX in treating PA, for my friend. My
> friend was Dx'd about six months ago with PA and was given Relafen
> only to treat it as it was limited to his hands. He also was referred
> to a dermatologist for treatment of the psoriasis. And I was
> wondering how far along you were in the progression of the PA before
> they put you on Enbrel and MTX? Did the Enbrel have any positive
> effect on your swelling?
>
My PA is not severely advanced, and my RD treated it aggressively from
the get go. We didn't go the antiinflammatories route because of my GI
problems, so we went straight for the pred/mtx combo. But, that wasn't
doing much. I never really got much swelling, but the sacroiliac pain,
achilles enthesiopathy, and the bursitis were just defeating me, and the
pred/mtx weren't doing much of anything. So, after a few months, my RD
prescribed Enbrel. It wasn't available, so I went on Kineret first. It
helped some, but the injections were intolerably painful for me, so when
the Enbrel became available, I jumped right on it. The effects were
dramatic. By the third injection, my hip pain had all but gone. The
heel pain took a few months, which was frustrating, though PT did help
resolve that. I've been virtually hip/heel pain free for about two
years.
Although I have a dx of PA, I do not have psoriasis. One RD felt that I
have a "not fully presented" PA, which the Enbrel nipped in the bud.
That was a second opinion. My present RD and I talked about the
diagnosis just today. I asked him if my dx was in fact an
undifferentiated spondyloarthropaty rather than PA, because I don't
present with typical symptoms. He feels that there are no typical
symptoms, and the bell curve of symptom presentation is quite wide. He
also thinks that all of the spondys tend to run together, and aside from
the TNF involvement, there is so much they don't know, and there just
isn't the technology to determine differences right now. The fact that
I responded so dramatically to the Enbrel, which is a TNF inhibitor is
kind of diagnosic in its own right.
> [...]
>
> >I agree with you, though your philosophical dilemma rings loud and
> >clear. At this point, quality of life is more valued than quantity. I
> >say go for the MTX. Make sure you drink water and take folic acid.
> >Take the injectible MTX, as people do have better results relative to
> >side effects. Give it this attempt. You do owe it to yourself this
> >time. I think you may always be wondering, if you don't.
>
> This is a very good point. I think I would always be wondering if we
> hadn't tried the MTX. Then again, if it in any way shows up in the
> liver panels as having an adverse effect I'll be off it immediately
> regardless. I need to keep my liver healthy just so I can take my
> other meds! <grin>
>
Damn, there's that liver panel thing. My liver panels have always been
good. Once slightly high, but it resolved itself after one month. My
GI doc wants me to have a liver biopsy because I've been on MTX for over
two years, and he feels that the liver panels don't always show damage
that can be done by mtx. Groan......... I talked him out of pursuing
this thinking, because I'm on such a low dose, 7.5mg/week. But, he
wants to do it eventually. Only, and I mean ONLY if I can be sedated.
I refuse to do that test without sedation. No friggin' way.
> >You're a tough lady, Kitt. So hang tough, and keep us posted.
>
> Why thank you, Di. That was very thoughtful of you to say so. Now I
> just need to keep reminding myself of that for awhile until I get
> through this rough spell. :-/
>
> Kitt
>
>
Fact of the matter, Kitt, we're all pretty tough. We have ups and
downs, tough days and easy days. We somehow endure the tough days, so
that makes us tough, I suppose. I mean hell, what are you gonna do,
right? Me, I just a freakin' pain wimp. I'm a wimpy gimp. I'm a
hangin' tough wimpy gimp. You are, too. :-)
--
Di
dabell at optonline dot net
My weekly mantras:
OSIM (Oh shit, it's monday)
TGIF (Thank God, it's friday)
Nann Bell
> Cost may be the prohibitive factor at this point,
Arava is quite expensive - 20mg/day (the higher dose) runs at least
$340/month, at least that was the cheapest I could find lcoally last fall
when I had to pay out-of-pocket briefly. Aventis does have a patient
assistance program that includes Arava. To qualify household income for 2
people can't be above $24,980 (I have my form here for my next round). More
details can be found at www.needymeds.com and/or www.rxassist.org should it
come to that.
Squirrely
--
Love and hugs to all
Good thoughts coming your way too.
Squirrely Jo
"Caroline Marold" <duckieX...@yahoo.com> wrote in message
news:c6med3$dstq1$1...@ID-60012.news.uni-berlin.de...
Aina Nilsen
> Hello Aina!
>
> Thank you ever so kindly for sharing your own experiences with these
> drugs! It helps a lot to know that things might eventually settle
> down, and that I might also be able to take low-dose Prednisone
> long-term with very little serious side-effects.
>
> Welcome to ASA!
>
> Kitt
>
>
I do show up here every now and then, but since I'm only able to get in here
once a week or so most of the time (and even then I can't read everything),
I seldom post because it would be so later after the first message. But
since I felt that I had some real imput where time didn't matter that much,
I did answer your request for information.
Hope your are doing better now.
Aina,
still mostly a lurker in Norway :-)
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