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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Member
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I have been instructed by my Nuero to take my pick between Immuran (probably never) , Cellcept (maybe) , and Cyclosporine....My first choice is Cyclosporine due to the low reported side effects...I would really appreciate anyone who has taken it, experience...Thank you
Sorry for the short post, pretty weak lately.. jessica |
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#2 | ||
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Grand Magnate
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Jessica, Sorry you haven't gotten any responses. More than likely people aren't feeling too good or they would've responded.
I don't have experience with those drugs, so I can't really give you the low down on them. I do know that you need to have blood tests to make sure you don't have a deficiency in these enzymes before taking Imuran: TPMT or thiopurine methyltransferase and xanthine oxidase. Do you have a history of any cancers in your family? That should be taken into consideration as well. Are you prone to infections? I'm sorry you aren't doing well lately. This is a tough decision to make. Is IVIG an option? Whatever you decide, I hope it makes your MG better and isn't too hard on your body. Take care. Annie |
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#3 | ||
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Member
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I take cellcept, mestinon and am getting IGIV's. I have never heard of Cyclosporine until I just looked it up and it seems to have all the same side effects as all the other immunosuppressants. I have never heard anybody on these threads mention it so that may be why you are not getting any replys.
Some people have said that they had good results with immurin though. Sorry nobody can help you. Tony |
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#4 | ||
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Member
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I had a thymectomy 2 years ago and started CellCept one year ago. My neuro said it would not help my droopy eye, but I have not had problems with it since. It took a couple of months for me to start seeing changes. I also noticed a big improvement in my leg strength. My upper legs always felt like jello and were so weak, that improved also.
I notice my hair does not grow as fast, save money on haircuts. I lose some hair when I wash my hair too. I get my blood tested monthly and have seen no changes in bloodwork yet. |
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#5 | ||
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New Member
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Jessica,
I am on cyclosporine for generalized MG and have been for about ten months. I was initially on Imuran which did not work at all and which made my blood sugars very high. I am also a diabetic. I was then on Cellcept which did not improve things but seemed to slow down the worsening of my symptoms. As far as the cyclosporine, it is a medication which has a lot of interactions with other things (medications, grapefruit juice, possibly licorice). It is a medication you need to be careful with. As far as immediate side effects, I have had mild nausea. I also go for weekly blood work to monitor kidney and liver function as well as the level of medication in my blood. I ended up with one serious infection and several less severe infections, but that can happen with any immunosuppressant. My understanding is that cyclosporine is not usually the first medication of choice because it is dicey to manage. I hope this info helps. Susan Greylocks |
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#6 | |||
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Member
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Thank you all for your responses. I think I am just going to have my Dr. make the call....I want to be on the one with the least amount of side effects, and I don't feel like there is enough info about any of them to make that call on my own...I am on IVIG every two months, but my side effects from that are getting worse each time, and my next dose will probably be my last. Anyway, I hope this finds you all strong and well.
Love Jess |
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Thread | Forum | |||
Cyclosporine? Anyone else have these problems? | Myasthenia Gravis | |||
Cyclosporine? Any info? | Myasthenia Gravis | |||
cyclosporine | Myasthenia Gravis |