Suggestions for ocular mg
I was diagnosed with ocular mg 5 years ago. Everything was under contro untill 6 months ago and I had a flare up, its still going on and my doctor cant figure it out. Increased my prednisone and that caused problems. Now trying to reduce it but my symptoms get worse. Droopy eyelids, blurry vision, I cant function. Anyone have any suggestions. Thank you.
I had IVIG and it helped me a lot with my double vision, during a flare from infection and antibiotics. My IVIG treatment was done as 4 hrs/day for 5 days and improved my symptoms by day two. My main MG symptom has always been double vision with a droopy eye lid, even though my neurologist tells me a have generalized MG, because I am anti body +. After having IVIG and more recently adding Cellcept, I have reduced my Prednisone gradually to .5 mg every two days and only 1 to 5 mg of mestinon occasionally when needed due to some temporary trigger. I am also on Mycophenolate Mofetil (Cellcept), which takes a very long time (up to 6 to 12 months) to be fully effective. My doctor attributes my ability to get by on such low doses of the other meds to be due to the Cellcept finally kicking in.
BTW, I find the liquid form of mestinon to cause fewer stomach issues.I am taking 60mg mestinon 4x a day and now reducing my prednisone to 20mg a day for 2 weeks then to 15 mg a day. I was told that ivig was to treat generalized mg and not ocular. This flare up started after I had 2 iron infusions because of low iron. If this continues I'll go to Pittsburgh Eye Institue.
You don't say what other meds you are taking such as Pyridostigmine or have you done IVIG? These are two possibilities.
