Biogen has reported a fourth case of PML with Tecfidera -- this one in a patient with only moderate lymphopenia -- to U.S. and European regulators, raising new questions about the drug's safety.

http://www.medpagetoday.com/Neurolog...clerosis/54704

I saw a new neuro on thursday, and he's wanting to put me on tecfidera.

Think I'll be passing on it now.

It's so hard to know what to do. I'm JC+ so that really scares me. I'm just not willing to take that chance. I'll go back on the shots (betaseron) before I take anything that can potentially give me PML.

In Aug.2015 I took tecidera, in a weeks time I felt like my stomach, chest, throat was being torn apart, the burning was unbelievable my tongue swelled.
The end of that med.

Then he put me on Abugio, took that for 2 months, started loosing my hair, lost all of my eyebrows and eyelashes. Fatigue was terrible. Well that was the last of that med. My hair has just grown back a little, he says it should come back, I hope so!!!

I am sick of us being used as ginny pigs. After the problems happen, then you are told about all the side effects and the real dangers.

Jappy

I agree with you, Jappy.

We have to be our own advocate. Research and double check what your Neuro tells you. They aren't the ones having to take these meds and suffer the side effects.

I'm at the point where I'm tired of being made to feel ungrateful (by my Neuro) for the fact we have access to all these meds. Last visit he told me I should be thankful there are so many choices. I am.....if I can find one that works for me. If Tec works for you that's great. Not every med works for everybody. I feel like I need to remind my Neuro of this as he seems irked every time I have a problem with a med.

Kitty you are so right. When I bring up something that I read and checked myself he seems to be insulted. I guess like saying "I got the Degree, not you"

I have only been going to this neuro for since Jan.2015. I left my other
one because he got bothered because I asked to many questions and investigation on my own. The neuro I got now was highly recommended. He was great from the start, but it seems they all turn out annoyed when you start to disagree with them.

Jappy

I know my Neuro gets irked at me for investigating things and especially things he recommends.

I tell him I'll do some research and decide if I want to do whatever he has suggested. You'd think they'd be glad that we're taking an active role in our own healthcare.

I don't think they remember that they are working for us and we can and will go somewhere else if we don't feel comfortable with them.

I have to make an appointment for January after the new year and I'm dreading it. That's a sure sign I need to look for another Neuro.

I have to tell him that I have stopped Tec (this will be the 2nd time) and will not be giving it another chance. I have had two bad reactions to it and, being JC +, I just don't want the added stress of worrying about PML.

http://www.webmd.com/multiple-sclero...ut-ms-relapses

High doses of vitamin D dramatically cut the relapse rate in people with multiple sclerosis, a study shows.


I have discontinued the use of Tec. Just too many side effects plus the fear of PML always looming.

I am going to begin taking 20,000 IU daily of D3. I also take a pretty potent B complex supplement plus Vitamin C.

My Neuro is always asking if I'm taking D3 and I always tell him yes, 10,000 IU daily. When I ask if more is safe he says yes, take as much as you can......just never gives me a definite amount.

I wonder if it's a liability thing? Anyhow, I'm doing my own research on it and have found some pretty compelling articles on how D3 really can help those of us with MS.