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cyclosporine
Hello everyone
My last post I think was last year... On March I started cyclophasphamide, at hospital. The MG was not so bad on June. July was a difficult month, the drug was not working, the side effects were so bad. Last week I knew I had to stop pulsotherapy because of its toxic effects. Now, I had to start cyclosporine, aside from other medications. What can I expect from this new drug? (I'm feeling sad...) I hope everyone is in good health... thanks for listening bluestone |
Hello!
Hello! I'm fairly new to this whole MG thing (diangosed in March, had a thymectomy in April) and am currently on Prednisone as well as Cellelpt. Now from what I've heard (from my docs) Cellcept is a better option - due to less side effects. Again, I don't know ANYTHING about cyclosporine, but my Grandmother underwent a heart transplant back in 87 and I know she was on it........From what I could gleen from my hemacologist/oncologist, Cellcept is the next generation of cyclo:D, but it does carry some very, very serious side effects (PML being the main one) howver, I decided to take it, cuz' I'm desperate for remission - I'll do anything at this point:D....Have you had a thymectomy? What are your docs saying? When were you diagnosed? How are you feeling today? When you get a chance, let me know how you are doing...........Take care! Erin:D
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Hello, Erin
Thymectomy is my last option, said my neuro. I´m on azathioprine (Imuran), corticoid, mestinon, was on CY, now I'm going to cyclosporine... The cyclophosphamide therapy was good in some sense, the crisis are not too severe last two months. But the side effects of this drug are something I want to forget. I felt as my body was burning inside my blood... I would like to know if someone is taking cyclosporine and how is he/she doing. Today I'm in a better mood than yesterday. I was diagnosed on September 2006 and since then, the disease didn't stop the progression. At first was just legs, arms and hands. Then the eyes and the swallowing and chewing troubles, the head dropping, the respiratory signs. I'm desperate for remission too. I would love to swimm again... I hope your remission could be with you soon! Take care you too! bluestone |
JUst wanted to see how you are feeling today? Things have been up/down here.......I keep praying for remission. What are your docs saying? Have you felt better recently? I'm really surprised that you haven't had a thymectomy - especially since your disease hasn't stopped it's progression. My doc had made me have one 1 month after my diagnosis, but I had gotten to the point to where it was endangering my life (basically everything you ar describing in your blog) - I mean there were no 2 ways about it. Every opinion I got told me that a thymectomy was my only option so I did it! Let me know how you are when you get a chance
Erin |
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