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.
I can't take the prescribed 60 mg Mestinon @ 3xday because it tears up my digestive tract so on my own I've determined what dosage level works for me and it's only 1 tablet a day cut in half. One of the side effects of Mestinon is upset stomach and it for sure does that to me if I take the prescribed amount. Too many days I'm just too tired to do much, a trip to Walmart wears me out so I miss going to stores to see other people. It's in retrospect that I realize I've had this well before I was diagnosed, it was a bad episode where I finally called 2 of my kids to help me. It's hard staying so tired and staying too tired to eat or too tired to even talk to family and friends on the telephone. Prolonged days of sleep is the only way I've found to handle the outbreaks. This stuff really sucks (and I don't use this word lightly) but it just doesn't go away. Just rest, sleep and listen to your body when it says you need to sleep. Those of us who've been diagnosed with it most assuredly understand what you're saying.
Thank you for your response. I'm sorry you're having it hard. An update to what I last wrote is that I found when I went below 7.5mg prednisone my symptoms returned. I increased back to 7.5, then 10, then 20 and am now at 40mg daily but still having problems. Today I had day 1 of a 2 day ivig treatment that I hope will get me back where I was six months ago. If it does, I hope I am able to do well long-term at 10mg prednisone daily and nothing else. Right now, Mestinon gets me by in eating and talking (I'm a teacher so talking clearly is important). Initially it didn't seem to bother my stomach too frequently, but for the last week it has been rough, so I'm anxious to get off it. I hope something will change for you and things will get better for you.
Weakness and fatigue are very much symptoms of MG. I have to use the electric carts at Walmart but was able to walk for a little while until I started to get hip or kidney pain recently. When I try to do something around the house, I get tired very quickly. I'm 78 and was diagnosed with MG about two years ago and have been on Pyridostigmine (Mestinon) and Prednisone for most of that time. Mestinon can produce a lot of gas and other symptoms. I think you need to see a neurologist that is more familiar with MG. In the clinic with mine only he deals with MG patients. I was the first patient with MG for my primary care Nurse Practitioner. She learned a lot and is quite helpful when I need her, but she will defer to my neurologist. I tried Vyvgart Hytrulo for two rounds but it didn't help. I would suggest that you get fully vaccinated for everything except measles (shingles, flu, Covid, Pneumococcal, etc). Your immune system is weak and getting sick may bring on a MG crisis.
Hi Robert, I’m in the uk where the treatment regime is similar but you seem to have a greater range of drugs available. I am 78 and had mg for 6 years. One of the problems with mg is that no two of us seem to get it the same. On the assumption you have the acetylcholine version then I understand the mestinon increases the number of muscle receptors and in my case fixed my eye drooping and double vision I take 5 x 60mg tablets per day sometimes less if I feel ok. The steroids defend against the antibodies generated by your autoimmune system . I take an average of 20mg of prednisolone and 150mg of azothiaprine daily. Not ideal, but I have tried reducing many times over the years and this seems to be as low as I can go and still have some form of life. I liken it to having a battery and when you have used it up, you will know because you don’t have the power to do anything and in my case I usually go to bed - climbing stairs is my acid test. Not so much to sleep but just to rest. Reducing the steroid dose is from my experience a long process but you will know when and if you’ve gone below what you need. Other posters on this have made sensible comments about the thymus, you don’t say if you had an X-ray but I don’t see how you could make a decision without doing that. I have had IVIG and I think it helped a bit but nothing significant. Good luck
I would look for a different neuro, fatigue is definitely a side effect of MG. I got MG a year ago at 83 and my energy was cut in half; aging is not a reason for being fatigue all the time. Good sleep is the best medicine. I take Gaba, Ashwagandha...have a cpap machine and still not easy toget a good night sleep; I also take Huperzine A as mestinon has too many side effects. I go to the gym and walk every day. There are also newer medications to try.
