Quote:
Originally Posted by Stellatum
Hi, everyone. Will you help me think through this? I am 45 years old. I work a bit from home doing editing and such, but mostly I'm taking care of my kids (I'm homeschooling three of them). In a few years they'll all be in school. I would like to get a degree in special education and work with autistic children. I think I have a gift for it. But I would have to be a lot healthier than I am now.
My neurologist is treating my illness very conservatively. Part of the reason is my decision: I told him I don't want to try Prednisone, at least not yet. My eyes are fine and I have no breathing trouble, and I'm able to do what I need to. But I don't want to be put out to pasture. I have other stuff I want to do in my life.
So: what next? Do I press for more aggressive treatment? More drugs? Different drugs? Prednisone? I've been on Imuran for about a year. I'm not sicker than I was a year ago, which may be because of the Imuran. But I'm not better, either. Do I push for CellCept, or something stronger (and more toxic)? I am taking 200mg/day of Imuran, but for most of the year I was taking 100 and 150mg. He should have upped my dose sooner. Maybe he should up in again now. I'm not noticing any side effects.
I'm willing to be patient, and I'm grateful that my situation allows me to live with this disease. It may well be that I'll never be healthy enough to do more than part-time editing from home, and if that's the way it's going to be, I'll have to deal with that. But I don't want to settle for less than I could have, just out of inertia.
Abby
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I recently had a similar kind of discussion with my neurologist.
I said to him just what you say, that I am ready to accept my illness, but don't want to think that I didn't try everything within reason to get better.
He said that he thinks I have tried everything within reason- Steroids, IVIG, PLEX, imuran.
PLEX and IVIG led to transient improvement with numerous side-effects.
Steroids led to significant worsening, which took me a long time to recover from.
It is very hard to know what would happen with various experimental treatments, but as my condition is not stable, it could easily make me much worse.
At least now I am able to lead a reasonably productive life . Going back to hardly being able to even move in bed most of the time for many months, is not something I am ready for.
We decided together that symptomatic treatment with nutritional supplements, pacing, using tools and aids including respiratory support as required etc. led to the best results so far.
Those are hard decisions and there is no right or wrong answer.
Some patients (and physicians) are ready to take significant risks for an unknown chance of full recovery. Others are more cautious in their approach.
In the early days of my illness (and not knowing much about it) I was ready to receive any form of treatment that could give me back my normal life.
Now, I have learned how little is known about this illness and what it means to have significant worsening instead of the expected improvement, that I am less eager to "jump" into those unknown waters. I think I have also learned better how to live with this illness.
My neurologist, with quite a few years of experience has also seen dramatic improvements but also not less dramatic exacerbations and is quite happy with a relatively stable, hopefully slow improvement.
He has told me quite a few times that with this "crazy" illness you never know...
For now I am reasonably happy with his very conservative approach.
(even though I have friends who try to convince me that I should receive rituximab etc.).
I believe and hope that within the next few years there will me more knowledge, possibly better management approaches for this illness.