M is for Mighty

What are those letters M. S. about?

Sometimes it Isn’t Black and White.

on December 20, 2016

Anyone who has ever dealt with a chronic illness knows that choosing the right treatment path can be time, research, and prayer intensive. As stated in earlier posts, we have definitely had our ups and downs. Since June of 2013, Tecfidera has been a great medication for us. The side effects were quickly managed with diet and supplements, and we were able to celebrate NO relapses! Yay! Success! Right?
The tricky thing about success is that it is ill defined and has so many parameters. Tecfidera has been a great success for us on all fronts except one. It just happens to be the one that has the potential for a life threatening brain disease.

If you are familiar with the world of MS treatments, then you have probably heard of Progressive Multifocal Leukoencephalopathy, better known as PML. Fortunately, there have been only a handful of cases of PML for patients taking Tecfidera, and all have had some shared characteristics.  

One of the most important risk factors is widely believed to be a low lymphocytes count for an extended period of time. As with many things, the definition of “low” and “extended” seems to be a bit vague, fuzzy, and ill defined. We have however found that three different neurologists in two different states agree that we have successfully thrown the numbers that meet those ambiguous measures and can no longer be on Tecfidera. (ALC has been hanging out around 500 since May 2014. It dipped as low as 200 and hasn’t really cleared 600 since then). 

I hope the doc has a plan for gray…


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