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Advice/comments for new MG diagnosis and possible treatments

This is quite long, but if you have time and can share any thoughts, I would be very appreciative.

New MG diagnosis and would like some opinions on doctor's advice. I'm a 54 year old male. My problems were swallowing, speech garbled and eyelids drooping. 10 days in the hospital and on a feeding tube. IVIG treatment started right away seemed to help some, but not a lot. Left hospital on 20mg prednisone, increased to 30mg after a week, then 60 mg after another week - this got me back to swallowing and talking normally after a couple of weeks at 60mg. A second IVIG treatment did not seem to do anything, so I chose not to have more of those treatments. After a month on 60mg prednisone, start to taper off. 40mg for a month; 20mg for a month; 15mg for a month; 12.5mg for a month; 10mg for a month; I'm now at 7.5mg. Doing okay throughout the taper. Still get tired quickly and easily when doing physical labor, but otherwise doing okay. Just saw my neurologist about what to do now. His recommendation was thymectomy and steroid-sparing drug for the rest of my life. I don't want either of those. Chances may be small, but they have some serious potential negative consequences I would not want to experience (cancer being the one that comes to mind first). I understand this might be a pipe dream, but perhaps I could be a case of someone who can get my with no surgery or drugs if I'm careful. I told him I wanted to try to get completely off prednisone and do nothing else until I see if I could do that, using Mestinon if needed (it seems safe). Here's what I'd like your thoughts on:

1. His taper would be 7.5mg for two months; alternate days of 7.5 and 5mg for two months; 5mg for a year and see how that works. I failed to ask why a year before dropping further. I want to speed this up: 7.5mg for a month; skip the alternating and in month #2 do 5mg; then maybe drop 1mg each month as long as I'm doing okay. I realize chances are I'll start having problems and have to up the dosage and start the taper over, but I want to find that out. Or at least find out what is the lowest dose of prednisone I can take and maintain how I am doing. I know Prednisone has negative consequences too, but I think I can manage those and feel those consequences are better than getting cancer. I think I'd choose long-term prednisone treatment at 5 - 7.5mg over surgery and steroid-sparing drugs. What do you think?

2. Two or three years before the diagnosis, I started getting tired very easily and quickly and could not do all I had once been able to do. I found myself needing to sit down to rest while shopping, being winded after climbing a flight of stairs, and having to push myself to do various yard work which I do a lot. I told my wife I felt like what I think an 80+ year old man feels like. My sleep isn't the best, but I can't see that would be the sole cause of how I felt. My regular doctor did various tests and could never find anything. When I told him recently I was diagnosed with MG, he said how I'd been feeling now made sense (but he's never had a patient with MG). Here's my question: my neurologist said this has absolutely nothing to do with my MG; that whatever it is would be something completely separate; and that in getting old this happens. I know as I get older my abilities will decline, but this decline has been very significant and I don't think is a normal declining. When I left the hospital, I recall being told to take it easy and let my body tell me when I should stop and rest or I could have another crisis, but now he is telling me there is no connection and I can work as much as I want no matter how exhausted I get - that it would not cause me any problems or send me into another MG crisis. I will say this though: on 60mg prednisone versus 7.5mg now, I can't tell any significant difference in how I feel; at higher doses I didn't feel any more energetic or need to rest any less than I do now.

Any advice or comments or suggestions are appreciated.

  1. Hi Roberts. I am a long-time sufferer, 76, and have been through everything you're going through. But listen, you are still a kid. I have to presume your doctor misunderstood your complaints about weakness and fatigue. You are not getting old. What you experienced IS MG. It's exactly what MG does. Your muscles are weak and get weaker with exertion. It's exhausting trying to make muscles do things they won't do. By the end of the day, you feel like the gum on your shoe. This is not something you can push through, like an athlete learns to do. It is not a question of will or effort. Your muscles are simply not getting messages from your brain. It is a mechanical problem deep in your neuromuscular junctions. You have no control over it. Repeat my mantra: It is not your fault and there is nothing you can do about it. Stop feeling guilty or old or somehow inadequate.

    Most doctors no longer recommend a thymectomy for anyone over 60 unless there is clearly a tumor. You are not over 60, but the medical literature shows little benefit to ever removing a normal thymus. I don't know what your tests show. So quiz your doctor and or surgeon. An enlarged, tumorous thymus is a risk and surgery is indicated. But removing a healthy thymus is rarely beneficial.

    Now I'm going to give you some hard advice because I hear you wondering if there isn't some easy shortcut to treatment success. There is not. Listen to your neurologist. You WILL NEED a steroid sparing medication like azathioprine, and while it knocks down your immune system, it is way safer than a lot of prednisone. Mestinon (pyridostigmine) helps a lot in the early stages, but it does nothing to suppress bad anti-body production and is just a stop-gap treatment.

    Please understand that you have a very serious disease and it must be treated seriously, with serious and, yes, dangerous drugs. I don't know if you can continue working, but I know you can't work to exhaustion without lots of rest.

    Mr. Roberts, your life will never be normal again. I'm sorry. But it can be rich and happy and rewarding. You will learn to adjust your expectations and find new meaning in the things you can still do. It is a long learning process that begins the day you finally face up to the reality of MG. Read everything you can find. Understand the MG disease mechanisms. Listen to your body and learn it's limits. Study the available meds. And keep up on the emerging treatments. From now on, you must be the pilot. Good luck to you. Know that you are not alone. There are a million of us and most keep moving along with grace and joy.






    1. Thanks Peter. I hope you get things under control quickly. You sound a lot worse than me. My job depends on talking so I'm going to take the prednisone tapering slow I decided. Hoping that by doing that I won't end up being unable to talk clearly again but will know it's coming soon enough to take action before it gets too bad. Although I don't like it, I can handle swallowing trouble and tiredness. Thankfully my job is not physically demanding.

      1. Hi Robert

        I have had MG for 18 months.
        Monthly IVIG’s, Cellcept, Mestinon and prednisone (only 5gg)

        When I started to feel a little better, Dr had me stop prednisone and we pushed IVIG treatments to 6 weeks from 4. Since then, IVIG back to every 4 weeks.

        I am Close to my first MG crisis(can’t clear throat at 3am). I can’t control my GI functions which keeps me homebound.

        Like you, I am rather sick and trying to figure out how to control my GI

        Seeing my neurologist this week (see him every 3 months)

        Ok to get off prednisone faster, but I am not a Dr

        Peter

        1. very tired all the time. Best when I first wake up, downhill from there

          Peter

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