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-   -   Starting with tecfidera (https://www.neurotalk.org/multiple-sclerosis/211200-starting-tecfidera.html)

Kitty 10-23-2014 09:25 AM

This is why it's important to have your blood checked twice a year. Low white blood cell count can identify a problem before it gets out of hand.

Natalie8 10-23-2014 10:19 AM

Looks like this possibility of PML on Tecfidera was not unforeseen.

http://multiplesclerosis.net/news/pm...for-psoriasis/

agate 10-23-2014 10:28 AM

One of the cases is described here:

http://www.nejm.org/doi/full/10.1056/NEJMc1211805

Rajkp 10-23-2014 12:53 PM

Looks like all the DMDs other than interferon and copaxone are having fatal side effects..the number might be less but it is frightening.

jprinz99 10-24-2014 09:00 AM

Hi. I have been on Tec since March. Doing well with what I consider minor side effects. The first few months were rough, but I expected that as I had been warned that if I could ride out the first 3 or so months things would get better. It was as if my body was fighting getting used to having Tec - bad gut pain, bathroom issues, vomiting, worn out feeling.

Now I have the occasional gut pain (not horrid pain, more like gas pain or stomach flu pain) rarely lasts more than 1/2 day. "Flushing" which for me is feeling like I have a burning/bad sunburn sensation & pink/redness from upper chest to top of head (sort of like how some people blush really badly). I use a cool, wet cloth and ride it out. Doesn't last too long (15 mins) My blood work looks fine. They have discovered that aspirin or benadryl helps many with flushing and eating helps with GI issues.

For me Tec was a financial decision. Since I have Medicare it was one of the drugs that would quickly assist me in getting financial help to pay for a drug (they hook you up to an org that will provide assitace to people withgov't back insurance, many of the MS drug co-pay help programs disqualify those with govt backed insurance from eligibility). I plan to stay on Tec as long as I can get it or my doc & I feel I need to switch.

Low white blood counts is one of the things to look out for. The patient who died had pneumonia and had low white blood cell counts {for 3+ years!}. In other words, she probably should have stopped the drug a while back till her WBCs got back up to a good range - as white blood cells are the things that your body uses to fight off any infections. Her infection eventually spread systemically to her brain (PML). I'm not saying I know the reason she dies was or was not Tec related - but I think she was essentially set up to get into some serious trouble if she got any infection.

Remember that none of the MS drugs will cure you - they all basically help to reduce prograssion, some also reduce disability and/or flares. Tec does all 3, others drugs also do all 3. IMO it's all a crapshoot and finances plays a big part for many of us.

Good luck with whatever you choose!


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