Husband just diagnosed with inflammatory arthritis
ND
an NSAID, tylenol III and hydroxyloquanine(sp?) in the meantime.
He's in his mid-30s and is very depressed about the constant pain and
how this may completely change his life. He loves scuba diving,
aikido, traveling, and wants to play sports and run around with our
kids.
Before meeting with this doc he's even said a couple times "why don't
you just shoot me and put me out of this misery." We don't own a gun.
I'm scared for him and want to offer him all the support I can while
still giving him as much independence as he can have with this
disease.
What can I do? Do you have any suggestions? Are there any good books
about this?
Maybull2
>an NSAID, tylenol III and hydroxyloquanine(sp?) in the meantime.
First on the list. Is this doctor a Rheumatologist? If not, get a referral
for him to be seen by one ASAP!
A Rheumatolgist is best equipped to diagnose and treat the over 170 diseases
that fall under the general heading of arthritis.
In the meantime, some prednisone might be in order until they can get him on a
DMARD (disease modifying anti rheumatic drug).
But try putting some rice socks on those joints that hurt.
A rice sock is a simply a cotton tube sock, filled about 2/3 full with uncooked
long grain rice. You put this in the microwave oven for 2-3 minutes. Stays
warm for about 20 minutes. Can be used repeatedly. Make him several of them.
They really help.
>He's in his mid-30s and is very depressed about the constant pain and
>how this may completely change his life.
Well, it may. But it is too soon to tell. We have a couple of friends here
with infllammatory arthritis of long standing. One (a lady) does white water
rafting every chance she gets. She is in a medicated remission. And another
(a man) who runs marathons. Most of us do not function that well. But it is
still possible to have a good quality of life. With the drugs that are
available today, it is possible to live a nearly normal life.
Your husband needs to see a Rheumatologist ASAP and get started on one of the
miracle drugs that are now available.
Good luck. And if he needs help getting a handle on this, send him here.
Support is the best thing we do.
Char
"Remember, I'm pulling for ya'.
We're all in this together." Red Green
debbie m.
I am sorry to hear about your husbands pain. I want to tell you right away
that I know you must be suffering too, because you feel there is nothing you
can do to help him. It is hard to be around someone who does not feel well.
You should be commended for trying to help him.
Get him to come here himself. He needs to know he is not alone and even
though his life will change, it can still be productive. There are meds
that can help get the pain under control and he might find some information
here he can use. He sounds like he is depressed, which is normal for
someone in constant pain and has their life changing. Maybe an
anti-depressant will help with that.
Ask him to come and join us and you are welcome also to come for any support
you might need during this time. It is hard for everyone in the family.
debbie m.
www.angelfire.com/ga2/angels1/
"ND" <nda...@mindspring.com> wrote in message
news:9ed68e61.03072...@posting.google.com...
Harvey R. Stone
>
>>He's in his mid-30s and is very depressed about the constant pain and
>>how this may completely change his life.
>
>
> Well, it may. But it is too soon to tell. We have a couple of friends here
> with infllammatory arthritis of long standing. One (a lady) does white water
> rafting every chance she gets. She is in a medicated remission. And another
> (a man) who runs marathons. Most of us do not function that well. But it is
> still possible to have a good quality of life. With the drugs that are
> available today, it is possible to live a nearly normal life.
>
> Your husband needs to see a Rheumatologist ASAP and get started on one of the
> miracle drugs that are now available.
>
> Good luck. And if he needs help getting a handle on this, send him here.
> Support is the best thing we do.
> Char
>
It can not be said much better than that. Please let me just add that I
was in my late 30s when RA started to set in on me. I struggled with
work and support of a family with four kids with two of them in collage
for 6 years before I got so bad that my family doctor handed me over to
a Rheumatologist and it was the best thing that anyone could of done for me.
I am almost 65 now and still have a rewarding life and can do most
things. Hayyy, I can still put the fish in my little boat, work in my
church, and watch my grandkids grow up. What your husband does not know
is that there is medicine today that will let him do most things he want
to do. He is actually very lucky that his diagnosis did not happen 5
years ago. Please have him take part here. You will have your old guy
back in no time. :-)
Harv
firechief
> The doctor is still doing tests to determine what kind
What type of doctor? A rheumatologist who is trained to
diagnose and treat arthritis? If not, have him make an
appointment with an RD ASAP.
> What can I do? Do you have any suggestions?
Reassure him it's not the end of the world. Direct him
to some activities that won't be putting more wear and
tear on the joints. High-impact and contact sports like
jogging and football really, really do nasty things to the
entire body.
Bike riding, swimming, dancing, travels (with proper
rest stops for stretching) are all activities in which he
could still participate. I was a Scout leader with my
4 sons for a decade after diagnosed with AS in 1977.
Week-long camping trips (plus a week travel from
San Diego to New Mexico and back via the Grand
Canyon and Taos) as well as shorter, local outtings.
When a former doctor told me to start using crutches
for walking to take a load off my hips/knees, I told
him where to STUFF! his crutches, found myself a
new doctor, and began square dancing. <g>
> Are there any good books about this?
The Arthritis Foundation has tons and tons of
literature - some free, some for a price. Visit
www.arthritis.org and/or locate a nearby local
chapter and visit there. They also often offer
seminars/classes/support groups and exercise
classes (P.A.C.E.)
You can also visit www.arthritisinsight.com ,a
site by KJ and others from here at ASA.
When I write "you", I mean both of you. Get
him interested in these sites and organizations.
Don't do it alone.
When there is a definite diagnosis, we'll be able
to offter more suggesitons and direct the two of
you to other resources.
... I'm just moving clouds today; tomorrow I'll try mountains.
Brad Clarke
If the doctor is not a rheumatologist, he needs to be referred to one
ASAP. Your GP can assist your husband in doing something about the pain
until he sees a rheumatologist.
I started having problems with my hands about 13 months ago (which is
not good, since I'm a software developer) at the age of 34.
I was referred to a rheumatologist, and was diagnosed as having
seronegative inflammatory arthritis in my right hand (as well as 3 other
types of arthritis in other parts of the body.
I am now on medication to control the pain, inflammation, and to prevent
further damage to my joints.
Yes, it is frustrating to be afflicated with this disease. When I first
experienced the pain, I felt the same as your husband does right now.
With the proper medical care, your husband should be able to lead an
almost normal life. With my medical treatment, I am able to do about 90%
of what I used to before.
Brad
Norio Ohki
I know you and your husband's frustration very well, because I was
disabled and lost hope husband 7 years ago. At that time,
my wife was at a loss with caring to disabled persons in my family,
me and my retarded daughter. I knew our family would be vanished in
less than 3 years. Then I came here in this news group and knew
Americans would have new promising drugs "Enbrel or Remicade", but
I might wait several years to have these nice drugs. At that time
I found the other path treating arthritis with cheap and safe
antibiotics. This therapy saved my life!
After then, I've been working as support leader of this therapy for
whom want to be on this in Japan, and not so little people have
already recovered from RA. I experienced these facts:
Men respond to this therapy first and well.
Patients in early stage of onset will respond first and well.
These two facts are the reasons why I recommend this. These are exactly
match on your husband's case.
If you are interested, visit these sites:
www.roadback.org
www.rheumatic.org
www.RheumaticSolutions.org
I recommend a book written by patients who founded Road Back foundation.
Author: Pat Ganger and Carol Lange
"Soloving The Puzzling Problem of Arthritis"
This book is unfortunately not sold on bookstores, I'll let you know
how to buy if you are interested to read this. Please ask me for details.
Norio
from Nagoya Japan
Maybull2
>
>~Kenny
Yep. I understand that. But it is one of the most mild and and least
effective. It sounds like this fellow is going to need some big guns.
Maybull2
>seronegative inflammatory arthritis in my right hand
Brad-RA is a systemic disease. It may be responsible for the pain in your R
hand, but you have it in your entire body.
Caroline Marold
husband is seeing a RD [rheumatologist]. Norio gave you some sites to
read about antibiotic therapies. Here are two other wonderful sites
which are very up to date and well written, and talk about lots of
different medications to control RA and talk about learning to live with
your disease.
http://www.arthritisinsight.com/
http://www.arthritisinsight.com/living/family/
http://www.arthritisinsight.com/living/family/letter.html
Also be sure to read some of the members stories and members can and
peek at the photo album. You will see faces to some of the names you see
on this board. We are real people living with this disease. Some days
are better than others.
And this site is written by a RD:
http://www.arthritis.co.za/
He has a great section on preparing for your first visit to your RD and
another on intimacy and arthritis.
And be sure to make your husband laugh; laugher is one of the best
medicines there is.
Be sure to come back and report how things are going. Ask anything -- we
will do our best to steer you in the right direction. Wish the internet
had been along 30 years ago -- I would have seen a RD sooner and still
have my wrists. :)
Welcome to our sandbox. Note: if anyone tells you that your chocolate
will be safe with them, the only one you can trust is DeeTee because she
only likes gumballs or gum drops or any other hard candy whose name I
suddenly can't remember. lol
consider yourself gently hugged.
Duckie
--
_('>
(_<_)
_
_('< -quack
(_<_)
_
__('< *QUACK!*
<_{__)
_('< "|,,|_"
(_<_)
_('< "AFLAC!"
(_<_)
Brad Clarke
>>>was diagnosed as having
>>>seronegative inflammatory arthritis in my right hand
>>
>>Brad-RA is a systemic disease. It may be responsible for the pain in your R
>>hand, but you have it in your entire body.
Yeah, I know :(
The 4 hotspots are the ones that showed up on the bonescan I had a week
after my initial RD appointment. My left thumb (and his friend Mr.
Nodule) decided to joint the party this year.
I'm expecting I may have to have another bone scan this year.
Brad
nda...@mindnospamspring.com
Thanks to you and everyone for their responses.
The Dr. he just saw is a Rheumatologist. She took one look at his
hands and said "Yes, there's obviously something going on there."
something his regular doctor didn't seem to notice. He feels that
she's good and that she will know how to control the arthritis. She
also mentioned that there are several new drugs that are much more
effective than what existed even 5 years ago.
She can't give him prednisone because of health risks based on his
current health and family history.
She's also ruled out methotrexate, just for now, because of the
tetragenic(sp?) effects.
We meet with her again in late August and hopefully she'll have some
answers.
I'll try to get him to at least read this group. It really helps to
hear about people dealing with the same stuff. Some of the literature
makes it sound like we should get a ranch house and a wheelchair
pronto.
Thanks again,
Nancy
Maybull2
>makes it sound like we should get a ranch house and a wheelchair
>pronto.
Lots of literature out there is outdated too. Dont make any drastic decisions
about house, etc., for a while yet.
firechief
> Thanks to you and everyone for their responses.
>
> The Dr. he just saw is a Rheumatologist. She took one look at his
> hands and said "Yes, there's obviously something going on there."
Nancy, one thing I may have overlooked in your post is what
area of the country you two are in. NE? SE? SW? NW?
... Behind every fireman is a woman holding his hose.
Caroline Marold
Without my husband, I would have had to move long ago. Don't make any
quick moves. I think his new RD will work to keep him right in your home
for years to come. If the time comes to move, you will move but that
should be the last thing you worry about now. However, you can begin
cleaning out things as if you were moving within the year. I am now
trying to get my husband to clean some of the 30 years of our life. We
are planning a move in three years. I still don't think I have enough
time. rofl.
Duckie
nda...@mindnospamspring.com wrote:
...... Some of the literature
> makes it sound like we should get a ranch house and a wheelchair
> pronto.
>
> Thanks again,
> Nancy
--
kelly
just diagnosed are in great position thanks to the new meds out in the next
10 years and the way the medical profession treats inflammatory arthritis.
Your husband has been started on a mild dmard (disease modifying
anti-rheumatic drug) probably while the doctor is investigating what kind of
arthritis he has and how he reacts to the plaquenil. (which is the common
name for the drug he is on). mtx is a commonly used drug for starting with
and it is a pity he can't be tried on it as it is also used in combination
with many of the other meds. It actually sounds like he has a good rd if he
has him coming back in August! Be prepared though for your husband to be
put on one or more drugs in combination - hydroxyloquanine (plaquenil) is
very very mild and doesn't always do the trick. I always had a list of meds
that I researched before so I could be prepared as to what would be next.
There are some milder tried and true meds that work on mild cases
(minocycline, penicillamine, sulfasalazine,) and are quite often used in
combination. Some RD's still use gold injections, imuran, cyclosporine
although these aren't used very often anymore as there are safer newer meds
out. Some of the new meds are arava (very hard on the liver so doctor's are
being very cautious with this one), enbrel and remicade). I know I have
missed some but those are just a few.
There are other things to know other than just meds. Exercise - even if all
the person can do is range of motion- is extremely important. Good
nutrition - some people find nightshade foods such as tomatoes or potatoes,
bother them but most find food itself does not make a different - but good
nutrition and keeping ones weight down makes a difference. Energy
conservation and joint preservation is important - decide what can
reasonably be done in a day and try not to get overtired or too sore. At
the beginning I made lists each day. Things that had to be done by me,
things that could wait but would be nice and things I could get someone else
to do. Sometimes these included wash my hair, make bed (husband would do
that), have 2 1/2 hour nap, make dinner, set table for company the next day.
Sounds stupid but sometimes the wash my hair was done by the local beauty
salon because my shoulders just couldn't handle that. Those lists were
really important and showed me how to budget my energy level.
Support - I can't stress enough - find support. That can be a spouse, this
group (my lifesaver many times over), family, friends, doctor, occupational
therapist, a social worker at the Arthritis Society (was my very best
support person in the beginning!), the arthritis society if you are in
Canada or the Arthritis Foundation in the states.)
Sorry this is long - so much to help someone new to understand. He has the
best thing he can have right now though. A wife who cares enough to be
here. If he can't join us (and it would be great if he could as it would
also let him meet some other men in the same position) please you stay! You
will understand so much. We really are a friendly group.
Kelly
<nda...@mindnospamspring.com> wrote in message
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Donnah
thank you! I needed that, too :)
donnah
"kelly" <kell...@shaw.ca> wrote in message
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