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...
Hello all.....Ive been lingering this forum for some time now, and it seems to be one of the more lively ones with a large group or regulars! Hello Curt, Cgreens,Sudhish,etc.
My question here is anyone on tacrolimus or cyclosporine? I am looking to drop my cellcept(currently on 15mg pred and 2g CC) for one of these 2.
I also understand that my main side effect to watch for is my kidneys(I have a call into my neurologist to discuss, but Id like to hear some users take on it)
Thanks all!
Mike
My question here is anyone on tacrolimus or cyclosporine? I am looking to drop my cellcept(currently on 15mg pred and 2g CC) for one of these 2.
I also understand that my main side effect to watch for is my kidneys(I have a call into my neurologist to discuss, but Id like to hear some users take on it)
Thanks all!
Mike
Ill do my best to respond with clarification on "disease control" vs. "symptom control". Others, feel free to add or correct me! :)
Disease Control - Typlically an immunosuppressant, but not always. Immunosuppressants commonly used ~ Prednisone, azathioprine, Cellcept, Cyclosporine, Tacrolimus, etc. Immunosuppressants reduce the response of the immune system and therefore reduce Anti-AchR antibody production.
Non-Immunosuppressant disease control would be plasma-pheresis, IVIG, thymectomy, etc.
There are 3 known antibodies MG produces(blocking,binding,and modulating). I do not know which ones, cause which response(or if there is a wealth of knowledge on the specific antibodies). The overall goal though, of the disease control, is to minimize the antibodies to allow for complete, proper muscle firing.
Symptom control could be classified as anything that makes up for the reduction in free AchR's. Mestinon is the #1 symptom controlling drug. Rest id classify as symptom controlling topic too. ICE, etc. Others might be able to add here more.....
Hope that helps!!!
Mike
Saw my neuro and am beginning tacrolimus on Monday. Had baseline kidney function. Will have monthly kidney function and tacrolimus level tests.
I see that I am starting at a much, much lower dosage than you---
1mg in am and pm for one week, then 2mg in am and 1mg in pm. Then 3mg in am and pm. I am continuing my plasmapheresis 1/week for 1 month then hopefully move to every 14 days, slowly tapering to once monthly.
I find it interesting that there is such a broad range in treatment depending on the clinic and neuro. When I asked her why she is choosing tracrolimus over cellcept, she didn't really have a good answer except that she bases it patient to patient. She would have let me start with cellcept had I requested it but chose to go with her instincts instead. Am hoping her instincts are correct!
Hoping you are doing well and have tapered down your prednisone as you had hoped.
~sherry
Best of luck with your tacrolimus! We will have to keep in touch on it!
I cant comment on the dose......I am 6' 220lb. maybe my neuro figured I needed more due to size?
I am currently on a hodgepodge of all kinds of stuff. But, nothing seems to be working well. So, I am considering tacrolimus next. Recently had my 3rd Rituxan infusion which has helped me reduce my Prednisone from 45 to 25 mg/day. But, my insurance company (CIGNA) will not renew the authorization because they are calling it an experimental drug. I am appealing the denial. But, I may have to abandon the therapy even though it seems to be helping. I am so ANGRY!!!
Anyway, I am anxious to hear how you guys are doing on the tacrolimus. Please keep me posted. Also, I am trying to get my neuro to increase my IVIG dose. I am only getting 35 gms every 3 weeks. And, I know I would benefit from a higher dose. Mike, have you had any side effects from your high dose IVIG? Thanks and take care everyone.
Staci
I think I am doing better on the tacrolimus than without although I am not symptom free, I think it is helping me keep off the predni. I am on 4 mg. 2 pills in am, 2 in pm. We will most likely bump to 3 and 3 in August. So far my kidney function tests are great and my tacrolimus levels are 2.8 which is pretty low so need to get them up to see a bigger difference and hopefully wean off of the plasmapheresis a little.
When receiving IVIG, I had 70g every 2 weeks-3 weeks