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Medical Forum / Diseases and Disorders / Arthritis / September 2006

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re: RA- Please post for ndRA  - thanks Fire Chief

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ferderkin - 16 Sep 2006 23:14 GMT
The Info I neglected - Female, 51, diagnosed recently after long round of missed diagnoses by family doctor for years, finally by Rheumy and confirmed by another doctor. Generally good health otherwise. First round of medication (DMARDS?)  horrible experience, felt as bad as one could. Second almost as bad as the first. There must be something else out there. These drugs to "cure" the disease are as bad as the disease is. Simply discouraged and wanting more hopeful information.
Fire Chief - 17 Sep 2006 01:35 GMT
> The Info I neglected - Female, 51, diagnosed recently after long round of missed diagnoses by family doctor for years,
> finally by Rheumy and confirmed by another doctor. Generally good health otherwise. First round of medication (DMARDS?)
>  horrible experience, felt as bad as one could. Second almost as bad as the first. There must be something else out there.

Now the folks here can offer a bit more help.  Remember we're not
doctors and the name of the group includes the
word "support."   That's a shoulder to cry on, share our chocolates,
brags about our kids and grandkids, post jokes,
share our successes and failures, direct readers to medical sources
such as the Arthritis Foundation, Totally Hip,
KickAS (ankylosing spondylitis), and government sites.

> These drugs to "cure" the disease are as bad as the disease is. Simply discouraged and wanting more hopeful information.

There is no such thing as a "cure."  DMARDS - disease modifying drugs
- can "slow" the advance of arthritis, but nothing
can "repair" damage already caused by it.  Nothing short of a joint
replacement, and many of the folks in this group have
had one or more.  I've met a 29-year-old lady who had 3 total joint
replacements.

This is a warning in case any doctor tells you "you're too young."
They are living in the stone age or beyond.  No one
is "too young" to improve the quality of their life by replacing
damaged joints which contribute to pain and reduce their
range of motion (ROM).   Original parts used in joint replacement had
an expected life of 5 or 6 years and doctors did
not want patients to undergo surgery 4, 5, 6 times.  Today's spage-age
materials -- thanks to NASA - have a live
expectency of perhaps 20 (maybe 25) years.  A person age 40 would
never need more than 2 surgeries, if that.

NSAIDS - or non-steroid anti-inflamatory drugs - are designed to ease
inflammation and pain, but do not stop the
progress of the disease (although reducing inflammation will tend to
prevent some future damage).

... At least a toad can eat what bugs him.
iwalgsf69@yahoo.com - 18 Sep 2006 08:36 GMT
> > The Info I neglected - Female, 51, diagnosed recently after long round of missed diagnoses by family doctor for years,
> > finally by Rheumy and confirmed by another doctor. Generally good health otherwise. First round of medication (DMARDS?)
[quoted text clipped - 34 lines]
>
> ... At least a toad can eat what bugs him.

HELLO,  I alsohave RH. arthritis, very severe, and PLEASE, whateve you
do, don't stay on predizone for  long periods of time, will bloat you
like a ballon!, REMECADE, IT HELPS, BUT SIDE EFFECTS ARE SO BAD, I
CAN'T TAKE THAT MEDICATION, i DEVELOPED A SEVERE COUGH, HAD IT 6
MONTHS, AND IT FINALLY WENT AWAY, NOW I'M ON SILADAC, AND NOT HELPING,
HOWEVER WATER AROBICS HAS WORKED WONDERS!, RELAXES MY TENSION AND HELPS
ME  , NOT TO BE SO STIFF, ALSO i SLEEP BETTER
K - 17 Sep 2006 14:35 GMT
I am 37 years old and have been diagnosed with PA (psoriatic arthritis)
since I was 27.  It took a long time to get diagnosed (4 years) and a
longer time to find a medication that actually helped.  I tried all the
NSAIDs and got very discouraged.  I didn't want to go on DMARDs because
I was afraid of the side-effects.  I got to the point where walking was
difficult and it really scared me, so I agreed to go on a biologic
(Remicade).  Still a little scared of side-effects, but the risk of not
do anything seems greater at this point than the risks associated with
the drug.

I feel a lot better.  It doesn't repair joints that are already gone,
but it eases the symptoms and in my case, totally got rid of all my
skin symptoms by the third infusion.  I can do small things now that I
wasn't able to before.   I have new hope, and am not as scared as I
once was.  I realize it may not be for everyone, and I understand from
other patients with whom I attend clinic that sometimes it can just
stop working.  But for now, I am basking in the relief.

Good luck.

K

The Info I neglected - Female, 51, diagnosed recently after long round
of missed diagnoses by family doctor for years, finally by Rheumy and
confirmed by another doctor. Generally good health otherwise. First
round of medication (DMARDS?)  horrible experience, felt as bad as one
could. Second almost as bad as the first. There must be something else
out there. These drugs to "cure" the disease are as bad as the disease
is. Simply discouraged and wanting more hopeful information.
Fire Chief - 19 Sep 2006 17:51 GMT
> I got to the point where walking was difficult and it really
> scared me, so I agreed to go on a biologic (Remicade).
> Still a little scared of side-effects, but the risk of not do
> anything seems greater at this point than the risks associated
> with the drug.

I was on Remicade for 2-1/2 years before the benefit
started to fade.  Then the RD switched to Embrel.

The only side effect I experienced was an "itching" during
the infusion, and that disappeared when the nurse slowed
the drip.  I went from 2 hours to 3 hours in the chair.  <g>

Synvics really helped the knee - 8 to 9 months of relief.
The RD tried Hyalgan yesterday and within a couple of
hours the knee and leg were pain-free.  Still feel great
this morning.  I'll give them a workout this evening at
the square dance.  <g>

... Everybody in the room was there.
 
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