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Old 12-21-2009, 01:40 PM
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Join Date: Apr 2009
Location: Tenn
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Quote:
Originally Posted by alice md View Post
Hi,

first, given the choice I would much preffer rituximab to cellcept.

I have not recieved it yet (altough my neuro is considering it at this point), but have given it to quite a few patients, and it is overall very well tolerated-short and long term, although it may cause an actue hypersensitivity reaction.

no immunosupressive treatment is "nice" or free of side effects. and there have been relatively rare cases of serious infections described in almost all of them, but most patients don't develop such complications.

weekly plasmapharesis is not devoid of potential complications, nor is cellcept.

it is interesting that you have seronegative MG and a thymoma.

there are studies that show that some patients with thymoma, who are seropositive also have anti-ryanodine antibodies, and those patients do less well and have a more severe course, then those that don't .

there is a debate among the neuros if those antibodies are involved or not in the pathogenesis of the illness. I am surprised that no one tried to look for them in your case.

also, there is a study that showed that patients with anti-ryanodine antibodies have a good response to FK506/tacrolimus as it has a direct effect on the ryanodine receptor.

quite complicated, I know, but this is the way this illness is-quite complicated.

don't know if any of this info. can be useful to you, but possibly some at least may.

alice
Alice, THANK YOU!! Cellcept, quite frankly, has always scared me. Both Cellcept and Rituxan carry the risk of PML -- but, Cellcept also carries the risk of lymphoma, skin cancer, and kidney damage.

cowgirl, plasmapheresis "killed" me -- so, there are "risks" everywhere. *sigh*

My MG specialist keeps Rituxan on the "back burner" for me -- just in case. He says that it offers the POSSIBILITY of remission -- maybe even PERMANENT remission. A lady in one of my other groups has been taking it for a couple of months -- so far, so good. She has strength that she couldn't even dream of a year ago.

Right now, I am able to "manage" with Mestinon and lifestyle adjustments. Like Joan, other treatments and meds are not an option.
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