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Old 01-13-2011, 05:45 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Mike, The blood tests vary. Some antibodies circulate and some stay in the tissue, destroying our neuromuscular junction! It also depends upon what lab ran the test. Was it the same one both times? It doesn't mean that the first one wasn't valid. She should get her test results. Why? Because there is a wider normal range with modulating antibodies (0-19). Even when my test is "negative," I still have antibodies on the higher end. Trends in tests are as important as absolute numbers.

Mestinon Timespan can be useful but you have to be careful with it because how much it "puts out" at any one time is variable.

Did they do the TPMT test on you? If not, they should have done it before you even began taking it.

http://www.labtestsonline.org/unders...tpmt/test.html

Imuran can take longer to kick in than say Cellcept. Everyone responds to drugs differently. Some people do better on IVIG or plasmapheresis. They can now do subcutaneous IVIG, which has fewer side effects (though not benign!) and you can do it at home (through Walgreen's Specialty Pharmacy, IVIG called Hizentra).

How long have you been on Imuran? Talk to your neuro again! It's an art form figuring out what works for you or not. It can take a lot of trial and error.

I wish I had a husband like your wife, if you know what I mean.

Annie
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