Medication
Wondering what form of medication people are on my husband has MG since.he was 23 after thymenocotmy was in remmision till 10 yrs ago hes now 62 back on Pyridostigmine been on methotrexate which has now been taken of waiting to start mycophenolate any one else on this if so how you managing.
Steadman I was in remission for 10 years with no dx of mg just an undiagnosed neurological condition, so no treatment of any kind to go into a remission, just did. Coming out of a remission is hard. I didn't get a Dx of mg & treatment until I flared in 2020. It has been downhill ever since. I am prescribed 1000 mg of Cellcept 2 times a day. And 5 mg of prednisone every other day down for 30 every day.120 mg of Mestinon every 3 hours while awake (that was 6 to 10 times a day some days.) I just last week started IVIG and Immediately that has now dropped my Mestinon to 60mg ever 3-5 hours while awake or longer in-between still!! And am able to do "normal things for the first time in 3 years." The Dr. waited until I could no longer chew or swallow food or drink and unable to do anything for myself again to give other treatment. Advocate for yourself and get the right treatment & find a good Dr that will listen!! Best wishes!! Sally Farrier... Myasthenia-Gravis.com (team member).
Hello
how is your husband doing? I got diagnosed at age 17 and I'm 29 now. I had a thymectomy in 2021. I can't say I've ever been in FULL remission. I typically have an MG flair up/ crisis once a year which normally leads to hospitalization for week. To answer your question, I'm on Prednisone 30mg 1x daily (I was on 10mg, but I had a crisis 2 weeks ago which led to the increase) Pyridostigmine 120mg 3x a day and IVIG monthly. In about a month or 2 depending on how I'm managing from my recent flair up I'm going to talk to my physician about going on reduced medication again. - Jazmin (MG team member) No, I live in the US. There are different types/variations to this medication. It stands for Intravenous Immune Globulin, it's made up of human antibodies to help patients with weak immune systems. It's indeed administrated through the vein. It can be giving every 3 - 4 weeks depending on the severity of your symptoms. I used to get them every 3 months when I was stable but now, I get them every 4 weeks. Like every medication there are side effects. In that case I look at it as a "pick and choose your battles" situation. I'm not familiar of the medications/treatments that are available to the UK but you can always ask your doctor if it's something you feel you can benefit from. It's always good to have good communication with your doctor so you BOTH can agree on a treatment plan for you, which makes you feel safe and comfortable. - Jazmin (MG team member) Sorry. I used the term "you" when you're writing in behave of your husband. Please mention this to him and I hope he is doing well. - Jazmin (MG team member)
Are you in uk
I have MUSK MG. I take pyridostigmine 60 mg 4x daily and IVIG monthly. I used to get Rituximab, but it wasn't very helpful for me.
