Thank you for your post and sorry to hear that you are having difficulties.

Not to hijack this thread - I have always wondered how one would know if the Imuran is working?

I am on 10 mg/day Prednisdone, 150 mg/day of Imuran and 420 mg/day of Mestinon - IVIGs every 30 days. 2+ years into MG.

I would consider myself stable. In that I am not getting worse. Most days.

Scott

Thanks for the reply. Good question. My neuromuscular doctor said it would probably be 6-9 months before we could tell if immuran was working. If decided it's not working then we'd try something else. He has told me I can eventually get somewhere near "normal" and taking minimal mestinon. I'd just love to be where I was 3 months ago before the exacerbation.
Also part of the plan is a thymectomy but that won't happen until something is working and the prednisone has been slowly lowered to at least 40mg.
How long have you been on the immuran if you don't mind me asking?

The benefit I see from taking Imuran is through the reduction of Prednisdone dosage, while still preventing double vision. Or something like that.

A couple of months ago now, I put myself in the same situation. Too much work in too short of time. I was fortunate though as I did not get as deep as you did.

Glad you came through and that you are looking forward to getting somewhere near normal in the not too distant future.

Scott

I had a similar experience. I ended up in icu and required PLEX. About a month later I was back in hospital. It took a few months after the second hospitalization to feel a real bounce back. This all happened despite being on immunosuppression for years. You just never know when a crisis is gonna hit.

I had a similar experience. When they told me it would take a year to fully recover I thought that sounded like forever. But it was a year before I fully recovered. I have lived a pretty normal life since then for 10 years. I reccently have had abig set back but that is ok. I am getting better.
The bad hospital stay really worked out for my benefit. I was on a ventilator. It was a nightmare for me and my family.
The advantage of a severe crisis is
1. you know the seriousness of the disease.
2. now you rest and take better care of yourself because I dont even know you but I bet you are a overachiever.
3. Your family knows the seriousness
4. when I say I am tires everyone in the family kicks in and helps
5. your employer knows the seriousness
When I get tired I look back and am grateful I had a crisis because if I wouldn't have people would probably think I was insane when one day I can do anything and the next day I cant.
6. A crisis helps you appreciate every day you are now given.

Thanks for the responses which are very encouraging to me. I'd been feeling like I'm just going to be in this rough state forever though it's only been a 1.5 months I've been on Imuran. I'm not a patient person though!
You make great points annkemp. Why is a crisis needed to learn these things? This is the information that should be communicated to MG patients when they are diagnosed. Too many doctors think MG is a mild chronic condition and treat it that way.

I still remember a doctor. He was sitting across the room with pity and sorrow in his eyes as he looked at me when I was fighting for my life. I barely heard him say...As he was shaking his head .....This is a nasty disease.

It is indeed a nasty disease. You were probably worse off than I was. I don't remember much pity but there was a nurse practitioner who after the second of three extubations and I'm lying there taking 30+ shallow gasps a minute that it was all in my head and I could breathe normally if I found my happy place. That was 4 days of torture. I was so glad to get intubated again after that.

yea
I was told that from a few people and then an educated person said...when you can't catch your breath it instinctively cause anxiety. It goes to show how little some people who care for us know and to remain a big part of our treatment.

As someone who tries to understand how MG works I have been thinking about what we call exacerbations -- periods when our symptoms get much worse that persist for more than a day or two, actually often for weeks or months.

It is hard to see how one day of extra exertion would cause a long-lasting effect. Of course if we have other issues and they get triggered, I can see that affecting MG, but why would 1 day of work make any difference in our immune system --far to short to create a mass of new bad antibodies. Everything in our immune system is delayed by days and weeks as levels of antibodies don't fluxuate that fast. And, it isn't the antibodies but their persistent, slow but sure attack on our neuromuscular junction that gives us the symptoms -- and that is also nothing that happens in a day. We don't go from "enough" junctions working to not enough rapidly. My guess is that we have gradually reached the tipping point of junction failure.

When I did more than normal, what happened to me was the next day or two I suffered, but then things went back to my MG normal status. I learned to load up on Mestinon on the workdays and that mostly prevented even the next day's issues.

I wonder if what is happening, is that our treatment, which by design is to take just enough of our potent medicines to get by, is not quite sufficient already. And that we were about to slide into more symptoms already, although gradually, and the physical stress just makes it a jump rather than a slide.

So, my speculation is that we would not get an exacerbation from physical activity itself if we were not being slighly undertreated, and the exacerbation was coming anyway.

I hated MG symptoms and the limitations and so, as I started treatment at age 65 (10 years ago), I insisted that I would rather be over-treated and functional than undertreated and safer from prednisone side effects (my choice for potent, convenient, cheap and rapid MG treatment ). And I was very liberal with the Mestinon preferring the side effects there over vegetating now for some longevity. I never had to test the longer term issues as my MG went into remission in less than 2 years and has stayed that way so far.

So, I propose that if you get an exacerbation from a day of work, it really shows your treatment has not been effective -- not enough or not the right one. And you would have gotten there with or without the day's work. Unless other non-MG factors are the contributing factors.

Good Luck
Russ

Thanks, Russ. You could very well be right. I've thought the same with regard to how it seems like you're okay to a tipping point to where a number of the neuro receptors are destroyed/damaged beyond function within a short period. Mestinon does nothing to prevent this as far I know, and at the time the only treatment I had was Mestinon. For many people this is all they'll ever need I guess, but I'm not that lucky. There were no immunosuppressants. One change my previous neurologist made shortly before it started was to switch me to 180 mg extended release twice a day. He had tried this before and I told him it didn't work for me, so this time he added I could take additional 60 mg tabs as needed, which I did often. I don't know if that was a contributor.

Thanks guys

My biggest question is why can I be fine for 10 years when on cellcept and 7 of prednisone and then have an exasperation which gets me back up to 60 of prednisone and mestinon again. That is what is challenging.

Sorry to hear that Ann. Just curious- did they make a change from cellcept or try a different immune suppressant? I don't know if this is relevant or not but my wife has had an autoimmune disease (rheumatoid arthritis- wish big pharma researched MG like they do RA) for 25 years. Seems like every 8-10 years the med they have her own loses its efficacy and they switch her to a different one.

hmm we aren't sure.
I am getting better so I didn't do plasmapherisis or any thing like that till I see my doc. I did a video and just a couple weeks I will see him in person fortunately. He also questions weather or not my thymus may have come back. It is just so wierd when mg shows its nasty head after doing so well. But I am happy I am doing better. Fortunately I like being home. Germs I don't want.
No my meds were the same. It started in May and I questioned if allergies triggered my droopy eye lid so I waited. Never again, My doc told me once he has never seen droopy eye go away on its own. And we know droopy eye is symptom of all the other stuff that is going on or going to go on, Live and learn