OMG and other medications I’m taking
Hi all. I’m in the UK. Diagnosed with OMG 10 years ago when I was 42. Remitting and relapsing. Went into remission for a good few years then this year it’s just relentless. I’ve been on steroids (5mg per day) even whilst in remission. Now I have high blood pressure, high cholesterol, type 2 diabetes. I’m on meds for all of these. (I’m sure the steroids caused all this) now I read on here that my blood pressure and statins can make my MG worse. What a complete mess I’m in. Now on 20mg prednisone daily and have started taking mestinon again and that’s playing havoc with my stomach. Taking the meds that are supposed to settle my stomach alongside the mestinon but not working. I really feel like I’m being fobbed off by my neurologist regarding all this medication I’m taking. Plus it’s not controlling my symptoms at the moment either. I’m 52 and I feel 80. Very frustrated at the moment. 😢😢
I too have had stomach issues with taking 60mg pill form of mestinon. I found taking the pill while eating a meal helped. I would take it during the meal, not before or after. I also found trying to take it with a small snack was not helpful. This ment planning meals around my med schedule. Being a diabetic also made meal planning difficult. I have also found the liquid form of the med to be faster acting and better tolerated. I use the liquid while at home, with smaller meals. The liquid is difficult to use away from home. I have also found hyoscyamine sulfate 0.125mg tablet to be helpful with my mestinon side effects. I hope this helps you to take your meds. This has helped me as I went from 15mg 2x day to 60mg 4x day in a week. (Still with very little effect on my MG symptoms) waiting on 1st series of IVIG. Hopeful of better outcomes.
We greatly appreciate you sharing all this valuable info!! - Jodi, Team Member
Hi there Jodi. Yes I’m taking predisolone 15mg AND mestinon. I have never heard of Vyvgart so I’m going to look into this now. Many thanks for reaching out
Hello! I am saddened to hear this year has been problematic for you. My most profound support and compassion pour out to you. How much do you rely on food to help with your healing and those conditions you have developed?
About 25% of individuals on statins will have worsened MG symptoms.
Raising your prednisone dose could potentially help. But unfortunately will only worsen your stomach issues and have long-term effects, so I would try to keep the amount where it's at.
Vyvgart has been an excellent drug for people with MG so far. I keep hearing fantastic things about the improvement people are seeing. Have you considered this potential treatment with your doctor? From what it reads, you are not on any MG treatment other than Mestinon, correct?
- Jodi, Team Member
