**IMPORTANT** PML & Tecfidera

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.
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Keleia
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**IMPORTANT** PML & Tecfidera

Post by Keleia » Tue Mar 17, 2015 7:02 pm

I can't help it...I need to know that others are seeing this, too, especially if you are JC-Virus positive, and are currently taking Tecfidera. This is an excellent article!

http://www.christusdubuis.org/body.cfm? ... ref=140038

Please let me know your thoughts. I'm just a little bit freaked out...
“Success is never final and failure is never fatal. It’s courage that counts.”

~Jules Ellinger~

BadKittyCat
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Re: **IMPORTANT** PML & Tecfidera

Post by BadKittyCat » Tue Mar 17, 2015 8:48 pm

I hear you! I think some Neuros are noticing... mine has sent me for JC virus testing (waiting for results) with borderline lypholites (spelt wrong). PML was NOT something I expected to talk about when I started (I turned down Tysberi already, partially for the PML risk).

fstaiano79
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Re: **IMPORTANT** PML & Tecfidera

Post by fstaiano79 » Wed May 13, 2015 3:12 am

Hi,

this post is quite old but I am interested in the argument. BadKittyCat have you had your JC result?
I know that I am JC positive cause already tested. My neurologist want me to change but I am really concern about it.
I have read the clinical trials and PML has been reported as a possible side effect. They stressed out anyway that the person who got PML was not getting other immune suppressor and was not JC positive if is even possible as JC virus is a dormant virus...

I am concern about it because I am the opposite JC positive and have been under meds for ten years almost!!! They do not state if the risk is higher for people like me.

If you were positive to JC virus what your neurologist told you?

BadKittyCat
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Re: **IMPORTANT** PML & Tecfidera

Post by BadKittyCat » Thu May 14, 2015 10:41 am

Thanks for asking :-). Turns out I am JC+. I was told that low lymphocyites (spelled wrong!) for more than 2 years would put me at risk for PML, so it was decided to keep with monthly blood tests and quit if it dips too low. Of course, this is based on my circumstances (less than 3 years of assorted drugs). It also truely helped that my clinic approached me on PML risk and answered my questions.

mmpetunia
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Re: **IMPORTANT** PML & Tecfidera

Post by mmpetunia » Tue Aug 11, 2015 9:29 pm

I am also JC+ and on Tec. I got blood drawn frequently the first 6 months on it and will now get it drawn at 6 month intervals. I think the risk of low blood counts is greatest in the beginning so I feel confident with the frequent monitoring that I received that I will be ok. The frequent draws gave me an opportunity to see how my body reacted to the medication over time and aside from my ANC being low at the time I began the medication (it was low at the baseline draw, so not related to starting the med) it has remained in range since with very little fluctuation. I am actually due for the 6 month check but I am confident there will not be an issue. The cases of PML that resulted from use of Tecfidera and Fumaderm were related to having chronically low blood counts over a period of time, which gives the JC virus an opportunity to reactivate and cause damage. The risk for someone who maintains an ANC in the normal range is minimal.
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com

littlestbabie
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Re: **IMPORTANT** PML & Tecfidera

Post by littlestbabie » Wed Mar 30, 2016 12:33 pm

I'm just curious - should I be seeking out testing to see if I'm JC+? My neurologist hasn't mentioned anything about it, but tbh I haven't been thrilled with their lack of attention so far, and I feel as if i'm not getting the thorough check-out that I deserve when it comes to starting a brand new and very serious medication! They didn't even perform an updated blood test so that they had an original panel of levels to compare future ones to :\ is this something I should bring up??

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carolsue
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Re: **IMPORTANT** PML & Tecfidera

Post by carolsue » Mon Apr 18, 2016 1:48 pm

I get tested every 6 months for JC Virus. So far negative, but if I ever test positive, I know I'll be looking at other treatments. I think you should definitely inquire.

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