Re: How do I know WHY I'm better?

[Guest guest]

Question: have any of you gotten off Enbrel, or

> other biologic medications,

> that didn't ultimately bring back active PA?

Hi Liz:

I can't speak for everyone, only from experience. When

I stopped Enbrel, it had been working pretty well, but

the side effects were getting tedious. I had to be off

it for eight weeks prior to starting Humira. Eight

weeks turned into four months of P, terrible pain so

bad in my feet that walking took such effort (it was

also the dead of winter - heavy snow and sub-zero

temps). I lurched around like quasimoto in a tin-man

suit and ended up on a temporary disability leave from

the office.

I'm still recovering. I never imagined it could get so

bad. However, remember that we all have different

physical and chemical makeup. We see it spoken here

every day that the med, or combo of meds that works

for one of us, doesn't for another. What I'm trying to

get at is that none of us with PA can take anything

for granted. Although we have similarities in symptoms

and treatments, there doesn't seem to be a " norm " with

this disease that could accurately say " this is PA and

here's how to treat it " .

My mother always told me not to experiment with drugs,

but now I have no choice Is there a " permanent

cure? " What wonderfully hopeful words these are. I

guess I'll have to considered a pessimist on this

issue.

Wishing you continued wellness,

Jane

[Guest guest]

Hi Liz....I was off Enbrel for almost 1.5 years after being on it for 1.5

years. What happened was a while back Enbrel was in short supply. I had to

reduce my injections from twice a week to once a week because the Enbrel was

just not available. After a while, since I didn't get any worse, I started

stretching it out even more. After about 6 months I was doing an injection

about every 6 weeks. I also was able to stop all the other drugs, Viox etc,

that I had been taking. I talked it over with my RD and stopped Enbrel.

After 1.5 years on no drugs except an occassional Viox when the weather

changed I started having some problems, minor at first, then I had an actual

relapse and went into a flare. I started Enbrel again a few months ago,

only this time I am doing only one injection a week. It seems to have

reversed most of my problems but I may have gotten some joint damage because

I waited to long. I'm really not sure. My PA is in my hands. The flare

and the progressive damage (one more stiffening finger this time) may be

because I went back to the University and started writing allot. I also had

a Cortisone shot in that finger so it may be a legacy of that. I haven't

had much luck with Cortisone.

In any event, every one is different. I have had stunning success on

Enbrel. Without it I was told I would have lost the use of my hands within

3 months and I was in suicidal pain. Enbrel actuall reversed the disease in

my case I have been told that if you go off of it you are still possibly

having subtle joint damage even if there is no pain or inflammation.

Personally, Enbrel has some annoying neurological side effects for me after

a while and I worry about infections. I will probably go off of it again in

the fall. One injection a week, 6 months on 6 months off, would be a fine

protcol with me. It reduces my risk and saves the big gun for when I need

it. And you never know. I might actually go into a real remission. The

horse may yet sing. Cheers Ronny E.

[ ] How do I know WHY I'm better?

> I'm almost afraid to write this for fear I'll bring on a " relapse " ....but

I

> feel so much healthier recently that occasionally I wonder if I could get

> off the Enbrel...maybe I got a bad diagnosis; maybe I'm " cured " ; maybe I

> don't need all these drugs; maybe I live with the aftereffects such as the

> shot tendons in my ankle, the hip replacement, and the general stiffness,

> and try to forget why they these body parts got screwed up in the first

> place.

>

>

>

> Enbrel wasn't an overnight wonder for me, but gradually over the past year

I

> have improved tremendously. I don't want to risk backsliding, and I'm

> almost positive that I have improved because of the 3 shots of Enbrel a

week

> for over a year.

>

>

>

> Question: have any of you gotten off Enbrel, or other biologic

medications,

> that didn't ultimately bring back active PA? I've read on this list of

the

> P and PA coming back with a vengeance after cessation of these wonder

drugs?

> Anyone out there who stopped permanently with no adverse effects?

>

>

>

> Liz

>

[Guest guest]

I'm kinda curious about the three shots of enbrel per week. I

thought enbrel was limited to two. I have been taking two for a year

now and everything is peachy!

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