ENBREL SIDE EFFECTS?

[Guest guest]

HI EVERYONE! I AM WRITING TO ASK FOR ANYONES EXPERIENCE WITH ENBREL?

I WENT ON THE INJECTIONS THANKSGIVING WEEK. I WANT THIS TO WORK SO

BAD , AND YET I AM EXPERIENCING SOME REALLY SIGNIFICANT PROBLEMS. I

DON'T KNOW IF IT IS THE ENBREL, MTX, PREDNISONE, A FLARE , LUPUS, JUST

FIBRO, OR WHAT! I AM IN SO MUCH PAIN, CAN'T STAY AWAKE... MAJOR

FATIQUE BUT ALSO NARCOLEPSI, SWOLEN ALL OVER, ALMOST UNABLE TO WALK

WITHOUT SUPPORT OF A CANE, BUT MOST IMPORTANTLY... I HAVE TINGLING, AND

SOME PRICKLY SENSATIONS IN MY ARMS, HANDS, AND LOWER LEGS AND FEET. I

ALSO HAVE MUSCLE PAIN , CRAMPING, AND SPASMS. MY RHEUMY AND DERM.

HAVE MADE AN APPT. FOR ME WITH NEUROLOGIST , AND HAVE SAID THEY THINK I

MAY HAVE MS. SUPPOSEDLY WHEN SOMEONE IS PUT ON ENBREL AND THEY HAVE MS

IT MAKES THE CONDITION PROGRESS RAPIDLY. ( MANY DO NOT KNOW THEY HAVE

IT AT THE TIME). THIS IS ALL REALLY DEVASTATING AS I AM A DANCE

TEACHER / CHOREOGRAPHER. THIS DISEASE IS CRIPPLING ME AND MY CAREER.

HELP ! ANY BODY OUT THERE THAT CAN SHARE SOME EXPERIENCE, STRENGTH, AND

HOPE! I HAVE ONLY BEEN DX FOR ABOUT 18 MONTHS. HAVE SEVERE P & PA.

I AM 46 YRS. ... WITH A 6 AND 8 YR. OLD. I CAN'T AFFORD TO PACK IT IN

AND LET THIS DISEASE TAKE OVER, HOW DO YOU DO IT?

THANKS.... " LIBBY "

EWILMOTBISHOP@...

[Guest guest]

I have the same thing. Called my rheumy, emailed my rheumy, made

appointments to see my rheumy and she basically did nothing. She just said

" your sed

rate is fine. " This went on for some six months, and the condition got

progressively worse: my feet went completely numb, they were so painful I

couldn't

have a sheet on top of them when I slept, and the tingling and numbness were

crawling up my leg like a hungry spider. For six months I endured this and my

rheumy ignored me and acted agitated every time I contacted her.

I, too, thought it might be ms, or diabetes. At my request I was tested for

diabetes and found that I am not even pre-diabetic.

Finally I saw my pcp and he diagnosed " peripheral neuropathy " -- nerve

damage, NOT ms. I had a name for what was going on! I went home and googled

" peripheral neuropathy " and " psoriatic arthritis. " BINGO. Up came a whole

bunch of information regarding the drug " arava " and the " rare " side-effect of

peripheral neuropathy. Shortly before all this began, my rheumy had put me on

the drug arava.

I now have a new rheumatologist who believes that arava caused my problems.

The bad news is that the nerve damage may be permanent; it will take a year

before I will know if any of the damage has been corrected (there's no medical

cure; there are drugs that can ease the sensations and pain). But I do feel

that the condition is slowly getting better.

I understand your concern and fear, but hang in there. And if your doctor

can't determine what's wrong, have him/her go over all your meds (especially

the ones you most recently have begun taking) to see if you may be experiencing

a side-effect.

I am angry at my old rheumatologist. She prescribed the arava and should

have been aware of all potential side-effects, rare or not. I had a classic

reaction. Since I am with an hmo, I asked my new rheumy to please inform my

old rheumy that my problem was a reaction to arava. She said she would; in

fact, she said she would do it that day. I want to spare one of my old

rheumy's

patients from going through what I did.

As I said, I understand your fear. But other things can be causing your

problems. Fortunately, it sounds as though your doctors are taking the

prickling, tingling sensations seriously. My rheumy did not and kept me on

arava for

six months while it poisoned my body.

Good luck. I wish you all the best.

BeingIrish

In a message dated 1/16/08 2:44:41 PM, ewilmotbishop@... writes:

<<I HAVE TINGLING, AND

SOME PRICKLY SENSATIONS IN MY ARMS, HANDS, AND LOWER LEGS AND FEET.>>

[Guest guest]

Hi,

I don't post often but I did want to share my experience. I was on enbrel

25mg 2x/week a few years ago (mostly for terrible psoriasis, PA flares are

just getting worse in the last year). I had no significant problems and

experienced great results with it (came off basically because I'm neurotic

about

meds no matter what).

A couple months ago with PA flaring worse and worse I decided to give it

another go. My rheumy tried 50mg 1x/week, and within 3 weeks like you I had

the

numbness/tingling in my feet. This freaked me out. One night they just

went numb and STAYED numb (for the week or so prior it was just intermittent).

My rheumy was on the fence as to how much it was related (???). Anyway, I

stopped taking it and within that next week the symptoms diminished and then

disappeared.

I would love to hear an update how you make out with the neuro. I now am in

possesion of the 25mg, thinking maybe in that dose I won't have a problem.

I haven't started it yet, though. #1, I am still freaked out. #2, I haven't

had a really bad PA flare again (yet) and I can live with the psoriasis

(most days).

From what I've read, there have only been 11 reported cases of people

developing these MS type symptoms. I find that ~very~ hard to believe.

[Guest guest]

LISA,

THANK YOU FOR SHARING WITH ME YOUR EXPERIENCE WITH THE NUMBNESS AND TINGLING.

I AM TERRIFIED. I GO TO THE NEURO. TOMMORROW IN THE AM. I WILL POST ANYTHING

INTERESTING ... GOD BLESS YOU ., AND THANKS AGAIN.

[Guest guest]

Well, I hope your appt. went OK. When you have time, please update the list

as I am wondering how you have made out. Thanks!