Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
After 36 years, my ocular MG went general in 2013. During those 36 years, I enjoyed many years of remission. Now my ocular is still in remission, but the general has affected the joints on my left side, especially the fingers, wrist and elbow.
I tried 4 months of prednisone last year at 60-50-40-30-20-10mg, and it had no lasting results. At the higher doses, I did experience significant improvement.
After reading posts here from all of you, it is clear I should have continued staying on prednisone, so last month I went on 10mg a day and that has checked the general from getting worse. I also need Mestinon, at 60mg 3x a day. The prednisone seems to make the Mestinon more effective, too.
I will be on 10mg for 3 months. If I have no remission, should I stay on 10 or increase to 15 or 20? It doesn't make sense to me to start tapering if I am not experiencing remission. Other than a slightly hoarse voice during the day, I do not experience any side effects from the prednisone.
My question to all of you with prednisone experience is: what is my goal? Is the goal of prednisone to get to remission? That's what I am hoping!
Thank you snowbeltfolkie for you reply the other day! It motivated me to post this.
I tried 4 months of prednisone last year at 60-50-40-30-20-10mg, and it had no lasting results. At the higher doses, I did experience significant improvement.
After reading posts here from all of you, it is clear I should have continued staying on prednisone, so last month I went on 10mg a day and that has checked the general from getting worse. I also need Mestinon, at 60mg 3x a day. The prednisone seems to make the Mestinon more effective, too.
I will be on 10mg for 3 months. If I have no remission, should I stay on 10 or increase to 15 or 20? It doesn't make sense to me to start tapering if I am not experiencing remission. Other than a slightly hoarse voice during the day, I do not experience any side effects from the prednisone.
My question to all of you with prednisone experience is: what is my goal? Is the goal of prednisone to get to remission? That's what I am hoping!
Thank you snowbeltfolkie for you reply the other day! It motivated me to post this.
The prednisone controls the MG. I would stay on 10 for months.
I would make sure I get through seasons ok and then drop to 9 one day a week for a month and see how you do. If that goes well drop and go to 8 for a month.
That plan should keep you stable.
At east that is what I wold do.
Ihave tried to get to 6 for 3 years now.
For some reason my life is good at 7 and at 6 I start having symptoms and get sick.
If you do well at 10 why would you even consider going to 15.
Do you mean if you don't get better should you go up?
I am also on cellcept.
The drop you did sounds seriously fast.
oh well ha
I am thinking after say 3 months if I do not have remission I need to make a decision - stay on 10 or increase. It seems pointless to start tapering, even to 9, if 10 did not result in remission.
Thank you for your reply and other replies sharing your prednisone experience. I do believe there is remission in the future for me, so the tapering program becomes very critical.
our drop sounds seriously fast.
Rule o f thumb can be only a 50 percent drop in 6 months. That would mean going from 60 to 30 would have taken 6 months.
Hope you are getting relief of symptoms at 10.
It's difficult isn't it, to monitor symptoms, when MG goes from ocular to generalized. Many people here have been down that road, including myself. It's good - to know the experiences of other MG'er. It's true that our experiences are not exactly the same, from person to person. Yet MG'ers do share many similar problems.
Please be sure that your Neuro is aware of any symptom that you are monitoring. If symptoms continue to be noticeably worse to you, or to family? You will want to see your Neuro.
Is it the joints themselves, that are a problem? Or does it seem muscular? If the muscles are misbehaving, or are noticeably more tired? Well yeah, that may be your generalized MG. Yet there might be other problems as well, not related to MG. And because different problems require different treatment, it's important to keep the Neuro in the loop.
Hoarseness: definitely tell your Neuro about this, if you haven't yet. Changes to voice, or any problems with swallowing - may be a bulbar-symptom of MG. While this could very well be one of those individual differences? I don't remember too many MG'ers on this board, who write about hoarseness attributed to Prednisone.
Also from the posts on this board: it's like you said, many Neurologists do consider a daily dose of Prednisone, 10mg or less - to be a dose used with ocular and/or mildly generalized MG.
There are also many people here, at 20mg or more daily, for mild-to-moderate MG.
Trying 3-months at 10mg: it won't take anywhere near that long to test that level. After 14-days or even a lot less? If the symptoms don't show some decline? Then it's likely a higher dose is needed. There are Prednisone prescriptions for 20mg, 5mg, and 1mg pills. All useful, in combination. The 1-mg pills are especially useful, in tapering back at lower dosages.
You are right. No point in trying a taper, if the symptoms are not subsiding enough.
Your goal, with Prednisone? Try to take as little as possible, while finding a level of symptom relief, that either keeps you out of trouble, or markedly reduces your symptoms, if trouble has already arrived. Taper when your body will allows.
Hang in there! These are all great, and savvy questions.
- Ross
PS: quality rest and quality sleep - can help. It's not a cure-all, but it helps. Even just reducing screen time of any kind, and resting your eyes. Or short naps. Or resting with eyes closed - can help. (I can't fool anyone, anymore. In our house, it's called Papa's naptime.)
I've gotten so much help, on this board?
Well, I can't begin to tell you.
I am a very thankful guy.
- Ross
Many do not have a Collateral program for prednisone users. Scroll the through the PDF and find the Collateral slide. Plus you'll find plenty of other resources.
http://neurologiauruguay.org/home/images/controversiasenmg.pdf
M
Ann, I am actually doing and feeling better after being on 10 mg for about 4 weeks now. I can feel the improvement in my left side joints. Thank you for the tapering advice, too. Last year I tapered way too fast. Now when I taper, I will either go to 9, or 10/7.5 on alternating days. I will stay on 10mg for another 2 to 4 weeks, then consider 9mg. I'm excited with that thought!
snowbeltfolkie, as I have been improving over the past few days, the hoarseness has also subsided. I do not know what causes it, but it would appear mid-day. Last year it got bad on the higher doses of prednisone, so this year it has been mild.
You are right, it doesn't take 3 months to know if 10mg is working, at 3 weeks I could tell it was working. Once, hopefully, I experience a remission, I will drop to 9 mg. Going with Ann's advice, I should take 6 months to go from 10 to 5 - depending on if my body will allow it, as you know, like Ann being stuck at 7 for 3 years.
I really do think I have mild general MG, it affects all the joints on my left side only, along with some fatigue, but I appreciate all the advice and techniques on resting.
Dealmaker, thank you for that prednisone paper, it was very informative!