Introduction/Indocin/Big Question/Little Question
de...@my-dejanews.com
I'm 36, live in Santa Barbara, and I've been diagnosed with PA for about two
weeks now. I had psoriasis for a number of years and it has been accompanied
by the occasional unhealing joint. When my back started to bother me my GP
referred me to an RD. He diagnosed me in about 5 minuets! I am scheduled to
go to UCLA and get a second opinion (I wouldn't normally, but this IS a
life-changing event). I have a feeling though that he is right.
When I was first diagnosed I had a h*** of a time holding it together to make
it to my car so I could cry my eyes out. All I had was visions of not being
able to do anything with my family. I couldn't sleep and was exhausted all of
the time. I'm gradually feeling better and a lot of it has been due to the
people in this group. You've shown me that life does go on, though sometimes
a little differently than we might have liked. I think that all Arthritis
diagnoses should be done in two parts. The initial shock followed up by a
session some weeks later to talk about what you can do about it. When my RD
was talking about what we could do he could have said to start with the
leeches, I was completely and utterly devastated and was not paying that much
attention to what he was saying.
I've been reading a lot on PA (and RA) [thanks CrissyJo for the good pointers
on your web site] for a couple of weeks and I have not found an answer to the
_big_ question. How long do people with *A (RA, PA) live? Normal life spans,
1/2 a life (or is that half a loaf...)???
My RD wants to start me on Indocin right away. I've read the (scary)
literature on the effects of Indocin and I was wondering if I should just
tough it out until something better (Celebra?) comes along?
One last thing (sorry about the questions). I'm supposed to go to Japan in a
couple of weeks and I'm wondering if I the high heat and humidity is going to
be a problem? Any ideas from our Japanese friends?
Thanks for listening,
Deanr
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SBaumga155
Dear Deanr,
First things first...take a deep breath...in thru the nose...out ,slowly
thru the mouth...there!
You can and will LIVE with this...one day at a time...one moment at a
time...that is all any of us can do. You are already ahead of the
game...you've seen an RD and you have US! :)
Most of us have been where you are right now and we can understand what's
going thru your mind. The best way to deal with it is to get all the
information you can...it is the unknown that scares us!
As far as the medication is concerned, why suffer when there is something
that will help you? Something that works for one person may not necessarily
work for you...but there are so many things that are available and it's
important to get treated as soon as possible.
And as far as questions are concerned...ask away...that what we're here
for...SUPPORT...and that's what you pay your DR for...ask and keep asking!
You've come to the right place...there's lots of information available to you
here.
Welcome aboard!
Sarah Baumgartner
Ifish2b
> I've read the (scary)
>literature on the effects of Indocin and I was wondering if I should just
>tough it out until something better (Celebra?) comes along?
Deanr,
Sorry to hear about your diagnosis. Its really tough at first and don't be
shocked if you go through anger, denial, depression, we all go through the
stages. I have RA and was diagnosed in March. I am concerned about the above
statement. From what I have read you should not put off treatment because
the damage is done early on. Have you been to Dr. Doc's webpage? I think
KrissyJo provides a link. Read everything you can on PA and become a partner
with your RD. After all, it is your health.
>. I'm supposed to go to Japan
Have a great trip. Is it for fun or work?
By the way, Welcome to the newsgroup.
Sarah L
KrissyJo
Welcome!!!! Pick up a shovel and help us with this sandcastle! Be careful
tho...sometimes some of the rowdier kids start throwing sand!!!<g>
>. How long do people with *A (RA, PA) live? Normal life spans,
>1/2 a life (or is that half a loaf...)
I have read some different things, but it seems the general consencous is that
we lose 10 years. But with all the new DMARDS that the future holds, I am sure
that will change.
>My RD wants to start me on Indocin right away. I've read the (scary)
>literature on the effects of Indocin and I was wondering if I should just
>tough it out until something better (Celebra?) comes along?
>
>
Can I ask why no DMARD? Most doctors are opting for earlier, aggressive
treatment.
>One last thing (sorry about the questions). I'm supposed to go to Japan in a
>couple of weeks and I'm wondering if I the high heat and humidity is going to
>be a problem?
Dont worry about so many questions! How do you know if you dont ask?
Just go and enjoy yourself!!!
>[thanks CrissyJo for the good pointers
>on your web site]
Your welcome!
Keep Smilin'
~krissy
"The most thoroughly wasted of all days is that
in which one has not laughed." Nicolas Chamfort
Deebee 3
> de...@my-dejanews.com wrote:
>When I was first diagnosed I had a h*** of a time holding it together to make
>it to my car so I could cry my eyes out.
>I'm gradually feeling better
Hi deanr,
Welcome. I think you'll feel even better as time goes on. There are really
a lot of positives to consider: a quick diagnosis, a treatment plan, access to
all the info on the net...heck, even that trip to Japan sounds awfully nice!
:)
I am glad however that I was diagnosed when I was (20, I'm 36 now). At
that time, my biggest concerns were how this would impact my partying schedule
( oh, and a few pesky classes to show up for!;). It can be a very scary time,
but take it one day at a time.
>How long do people with *A (RA, PA) live?
This is one question that doesn't really concern me too much. Bottom line,
life is short, no matter what, and I'm not going to spend it worrying about
whether RA is what does me in or if I get run over by the bus.
> I've read the (scary)
>literature on the effects of Indocin and I was wondering if I should just
>tough it out until something better (Celebra?) comes along?
Indocin is an NSAID (there are lots, BTW, so if you don't like Indocin, try
anothert) and will help the the inflammation and pain, but you should talk to
your doctor about a DMARD that will attempt to do something about the disease
itself. There *are* some very promising drugs in the pipeline, but until then,
do what needs to be done to take care of yourself.
Re: your trip and heat/humidity: it seems to be an individual reaction but
the humidity *could* cause problems. Get an aisle seat for the long trip over,
take plenty of meds with you, be sure to get adequate rest and pace yourself
and I'm sure you'll enjoy it.
Denise
RHWheatley
>My RD wants to start me on Indocin right away. I've read the (scary)
>literature on the effects of Indocin and I was wondering if I should just
>tough it out until something better (Celebra?) comes along?
I was on Indocin for about 4 years and the only side effect I had was
drowsiness. I was extremely careful not to take any other aspirin or
aspirin-like meds, and always took my Indocin with a meal or lots of milk.
Hope that helps if you do decide to take Indocin.
Rosemary in Michigan
RSGinCA
Deanr,
It's certainly not the end of the world! I was diagnosed with severe PA 19
years ago, and things have gone pretty well since then, mainly due to the
treatment that I've recieved. Once I got treatment, my condition improved
tremendously. I'm taking Indocin, and have been for 19 years. It is hard on
the stomach, so I'm very sure to take it with meals. I take 50 mg 3 times a
day. I don't know if that's a lot or not ( a neurologist that I saw recently
was surprised at that dosage ), but it did cause SEVERE stomach pain about 15
years ago, at which point my rheumatologist had me start taking Tagamet ( 900
mg ) every day before going to bed and I've had little problem since. If your
condition is mild enough that you're even considering "toughing it out", you'll
probably be taking fairly small dosages and any possibility of side-effects
will be much reduced. I'm also taking methotrexate ( a DMARD ) which also
helps a lot. Like others have said, I wonder why your doctor isn't
prescribing a DMARD.
Arthritis can change your life, but probably not as much as you're thinking.
There is good treatment available and you'll probably be able to lead a fairly
normal life. I must admit that I had to leave my home, in a COLD climate,
because of my arthritis but other than that I can't complain too much. I wish
I'd been living in Santa Barbara instead of Maine when I'd been diagnosed!
I can certainly understand what you're saying about the way the diagnosis is
handled. Fortunately(?), my arthritis came on very quickly and when I finally
saw a rheumatologist, he immediately had me admitted to the hospital where I
recieved very comprehensive treatment... medical, physical therapist,
occupational therapist, phychologist.... the works! And when they used the
leeches, it wasn't really that bad (just kidding)... It really did help to
talk to the phychologist about my feelings and concerns. It probably would
have been even more of a help if I'd had newsgroups like this to access! I
found it hard because I didn't know anybody my age that had arthritis and
wasn't able to learn from their experiences. ( And I'd never met anybody else
that had psoriasis, let alone psoriatic arthritis. )
I seem to be a little different from a lot of people with arthritis, but I love
high heat and even humidity. Hasn't it been cooler around where you live
because of El Nino? That might have had some impact on you and your arthritis.
Maybe you'll go to Japan and your arthritis will disappear! I was in Phoenix
for a while and it was like my arthritis disappeared!
In any event, let us know what it's like in Japan and how it affects your
arthritis! Maybe you can even get on the net over there and keep us posted!
Good luck,
Rick
Lady Andy2
Hi, Deanr... welcome to the group! First of
all, I have to say, finally somebody with
PA getting a little closer to me! I'm in the
San Fernando Valley, and if you're thinking
of going to UCLA for your second opinion, you'll zip right through my home
territory.
(if you need a great rheumy in this area,
just let me know)
Now, relax everybody... he said he's only
been diagnosed for two WEEKS! Yeah,
maybe he'll need a DMARD, but sheesh,
give the doc a chance! When I was
diagnosed, mtx wasn't even mentioned at
first. However, as my PA got more severe,
it was mentioned, although the decision to
go on it was left to me.
I've had PA for 6 1/2 years now and Ps
since I was about 13 (now 49). I know the
mtx helps me and keeps both pretty much
under control, although the PA does
continue to progress ever-so-slowly. The
most important thing is to be educated
about your condition, know the options, and
have a good working relationship with your
rheumy.
The advice to see drdoc's web site is great.
Address is: http://www.aztec.co.za/users/drdoc/
As to the traveling, I find whenever I have
more stress, I have more disease. My PA
first showed up during a period of great
stress when I had to handle a commercial
booth at a Swiss restaurant show all alone
for the first time (we never showed outside
the U.S. before!). Talk about stress!!
Anyway, found my PA suddenly appeared
a couple of weeks before I was scheduled
to leave. I couldn't stop and think about
what was going on, as something was
different with my body, but I knew something
was happening and I'd have to look into it
as soon as I got back.
Wellll... I did what I had to do on that trip,
but I'm sure that stressful period started the
PA and made it flare big-time. By the time
I returned, my knees blew up into nice,
round balls and I had to see my then doctor
for the first time in maybe 9 or 10 years.
That doc was useless for me, and he's now
history. I got a referral to my current
rheumy, and I now consider him my primary
physician, as well as my rheumy, and not so
incidentally, my friend.
This we pre-computer for me, so I had to
do my studying the old-fashioned way...
books, books, magazines, Arthritis Fndn,
and more books. Found water exercises
help me immensely... as well as being on
mtx and relafen and in the care of my
rheumy.
Life goes on... I have found I need to do
the things that make my soul happy more
than I need to work (used to work much
too much and do what I love too little).
I sing in a Jewish choir... paint when I
find the time, love to draw (pencil, pen and
ink, whatever), love my animals (currently
just 2 cats...may have to get another dog
one of these days).
I still work, but am lucky in being in the
family business, so I have been able to
cut back on the hours and the heavy
physical stuff I used to do. I still travel
with the business, but haven't done any
more shows alone...force my brother to
send EMPLOYEES with us, to do the
heavier stuff (novel idea <G>).
In short, life goes on... you'll get used to
it, although it may not seem so right now.
I've had 2 total knee replacements, 1
total hip replacement, and am sure there
are more bionic parts in my future. But
there are still lots of great things in life,
and I'm not missing any of them. Just
came home from a great vacation to Maine
(you may have read about it <G>) and
enjoy life at MY pace. You'll learn!
Best regards,
LadyAndy2 (your neighbor!! hehe)