[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

[scrubbs]

I am in the opposite position of you. Treated aggressively since diagnoses.

Prenisone, cellcept, mestinon and IGIV with only a reduction in pred. Now down to 30 ml. eod.

My Neuro considers me stabilized since the last time I crashed in Dec. 2010 but I still have good days and bad and my bad days seem to be getting worse. I am wondering if it is my disease or side effects from the drugs? Or maybe just getting older?

I see my Neuro on Tuesday and I am going to ask him about a reduction in treatment.

Beside having this disease, I think we all have the same problem.

Too many questions. Not enough answers.

Tony

[pingpongman]

Tony I'm on the same treatment but 50mg of Pred. I'm on the last leg of 24 IVIG treatments (3 per week) and I seem to be getting worse. I start PT next week for my legs. They are really getting weak. Not sure where we are going from here but I really feel helpless.
Mike

[alice md]

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

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.

[Stellatum]

Thanks, all of you, for reminding me what I forgot: that aggressive treatment doesn't necessarily mean improvement--it could mean making things worse. Over-treatment is also something that we need to try to avoid. Conservative treatment is not equivalent to putting me out to pasture.

This is such a weird disease. My symptoms are always there, but get worse and better dramatically during the day. My husband put a foot bar on my rollator today for the many times I walk into a restaurant, store, etc., but need to be pushed out. Today (in a calculatedly reckless way) I went to the park with my family for a picnic and actually played Frisbee with them for a bit. Then of course I couldn't even walk back to the car. Crazy disease.

The foot bar on the rollator's no good, because it gets in my way when I walk. His next attempt is going to be stirrups. I just need something to rest my feet on when I'm being pushed on the thing.

Abby

[Brennan068]

Originally Posted by alice md

I believe and hope that within the next few years there will me more knowledge, possibly better management approaches for this illness.

I try hard not to be a downer but I don't believe this is a realistic belief or hope. The disease is too rare to get significant research or research funding. The powers that be have "acceptable levels of management" currently and I sincerely believe that unless a rich celebrity comes down with MG we're not going to see much for new cures / management in our lifetimes. The facts are for most of us, a thymectomy leads to remission. For most of the rest, mestinon manages the disease (lucky for me, this is where I fall). For most of the rest, PLEX and/or IVIG gets us through the rough patches. For most of the rest, steroids weakens the immune system enough that the disease becomes manageable with other methods (PLEX, IVIG, Mestinon...) There are frankly very (to?) few of us who are unable to manage the disease with the standards for the medical establishment to invest in many new approaches.

I do hope I'm wrong and a cure is found, but that's my expectation. Maybe (just maybe) arthritis research will spill over to a cure for MG. I think that's probably the best hope we have for a cure in any of our lifetimes.

[4-eyes]

Abby,

If you need to be pushed in the rollator, then you need a wheelchair. A rollator is absolutely not designed to be used as a transport device, except in an emergency. The fact that you are making plans to use it as such, and even modifying it, is proof of that. What you are doing is unsafe.

I would suggest looking into a lightweight travel chair, just to keep in the car. Use that for going into restaurants and such and save the walker for use within the house.

In your case, I think you are a long way from being "overtreated." Having a talk with your neuro would probably be a good idea. Ask him/her what he/she would be comfortable prescribing for you and then research and go from there.

Good luck!

[Stellatum]

Thanks, 4-eyes. It's very tricky, because my symptoms are so variable. I've been avoiding a wheelchair because it's important for me to walk when I can walk, to avoid deconditioning. Often I walk completely normally. But if I'm going to, say, a department store, the rollator is perfect because it lets me sit and rest so that I don't wear myself out. People who see me walking with the rollator must wonder why I have it at all, because I often walk completely normally with it.

I suppose the solution is a convertible--it changes from a rollator to a wheelchair. But I really don't see the difference between that and what we've rigged up. Do you think it has to do with balance--where the center of the weight is? Here's an example: http://www.1800wheelchair.com/asp/vi...roduct_id=2869

We do only use it for short distances, like to get me to the car when I've suddenly gotten weak.

I am sort of waiting out this Imuran trial. At my next visit, I'll be able to say, OK, we gave the Imuran a chance to work, and it didn't. What's next?

Thanks for writing, and for caring, and for being here!

Abby

Originally Posted by 4-eyes

Abby,

If you need to be pushed in the rollator, then you need a wheelchair. A rollator is absolutely not designed to be used as a transport device, except in an emergency. The fact that you are making plans to use it as such, and even modifying it, is proof of that. What you are doing is unsafe.

I would suggest looking into a lightweight travel chair, just to keep in the car. Use that for going into restaurants and such and save the walker for use within the house.

In your case, I think you are a long way from being "overtreated." Having a talk with your neuro would probably be a good idea. Ask him/her what he/she would be comfortable prescribing for you and then research and go from there.

Good luck!

[4-eyes]

Oh, that "covertible" (HA!) looks SWEET! The reason you don't want to "ride" the rollator is because it is not designed to be bearing the full weight of an adult while being pushed. Also, its center of gravity is different, so it is less likely to tip.

As for the deconditioning issue....it really isn't an issue if you have "planned" exercise periods in your day. This is where the wheelchair or convertible would be ideal! Just head down the street, or through the mall or whatever and go as far as you can. If you get tired, sit and ride. Of course, you would need to have a person with you to assist. Having the planned exercise would take the stress off the times you go out, and you could just be pushed without worry about deconditioning.

[Stellatum]

Hmm...yes, thank you, that makes a lot of sense. It really is hard to get a wheelchair. It's a psychological transition. I'm sure you know what I mean. I also am going to feel funny walking around the neighborhood with my husband while he pushes an empty wheelchair. But I guess my neighbors will get used to seeing us.

Thanks a bunch for talking me through this, and for the good suggestions.

ABby