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Have Your doctor test lymphocyte count

Posted: Wed Oct 07, 2015 8:33 pm
by Kgerber
I was bummed of course when I got the news of MS, but going on a safe oral was good news for me. I was immediately put on Tecfidera and had little to no side effects. I did everything to prepare for the worst side effects, but after two weeks it was smooth sailing. However, a year into it I started having skin issues and I lost a ton of my pigmentation due to vitiligo. It was not agreed if the Tecfidera was the cause. My neurologist kept saying " it's not in the literature". Fortunately, my derm tested my T cells and B cells and said I was in a dangerous position. She said to get off the pills as I was too suppressed. My neurologist only tests for the WBC and vitamin levels. When my neuro did his own testing he was shocked at my extremely low lymphocyte count. I went off Tecfidera at that moment when I saw his eyes look at the blood panel. i believe my numbers have been bad for over a year. Tecfidera was not the right drug for me, but it may be the right drug for you. I just hope you would read this post and ask your neuro to do a full blood panel and check lymphocyte and everything else because the docs aren't directed to do that and something could be brewing.

Re: Have Your doctor test lymphocyte count

Posted: Sun Oct 11, 2015 7:25 pm
by BadKittyCat
I am a little surprised, only because my doctor monitors regularily (more frequent because my count is a little low), and I was told that they were Ignatius given guidelines for lymphocite count with the drug. Maybe it is a location difference (I am in Canada), but apparently it is supposed to be a standard in the routine blood tests.

Re: Have Your doctor test lymphocyte count

Posted: Sun Oct 11, 2015 9:57 pm
by Kgerber
Yes, I believe he dropped the ball and I am in the process of finding a new physician.

Karen t

Re: Have Your doctor test lymphocyte count

Posted: Fri Nov 27, 2015 2:46 am
by RuSmolikova
Updated recommendations to minimize the risk of the rare brain infection PML with Tecfidera.

http://www.ema.europa.eu/ema/index.jsp? ... 058004d5c1