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Old 05-08-2007, 12:46 AM
The Canadian The Canadian is offline
Junior Member
 
Join Date: May 2007
Posts: 19
15 yr Member
The Canadian The Canadian is offline
Junior Member
 
Join Date: May 2007
Posts: 19
15 yr Member
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Hi Alberta, it's me Ontario!

How old were you at diagnosis? I was 15 when diagnosed, had thymectomy and was mestinon-dependent/remission for about 14 years. Went into relapse and then started prednisone, IVIg and CellCept.

I was on CC for 5 years but it hasn't been the wonder drug for me and I've actually stopped taking it (as per my own orders!). EVERYONE is different though. It usually takes about 18 months for CC to take any effect and you really have to be up to 2-3g daily to see any effect. This dosage information comes from Dr. Drachman at Johns Hopkins.

I'm currently at 15mg prednisone, 90g IVIg biweekly and 60mg Mestinon q2hrs. I, too, have developed anemia though my numbers are in the 100-105 range and not quite as low as yours. However, my normals used to be in the 130s so I do find the drop quite devastating. I'm actually going for a bone marrow aspiration tomorrow to find out what kind of red blood cells I'm producing. I also have kidney problems so who knows what's at play right now.

I just returned from the MGFA Annual conference in D.C. where CellCept was a hot topic. Have a look at their website for more information: www.myasthenia.org

FYI: Liquid Mestinon is only available to us Canadians through the Special Access Drug programme. I recently had to use it while hospitalized in Arizona and I have to say that I liked it much better than the pill form. Easier on the stomach and of course, easier to swallow.

I maintain a blog about IVIg in Canada: http://ivig.blogspot.com/

Good luck!
Jennifer
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