encephalitis & wbc count

[allHailye2]

I have 2 questions...

Has anyone gotten encephalitis or meningitis or shingles while on tysabri?

Has anyone's wbc count (mainly lymphocytes) been raised while on tysabri?

Thanks for any info u have. I'm still researching & trying to decide if I want to give tysabri a go.

[LL60]

allHaileye2,

I have never had encephalitis. My doctor has voiced a concern about this when I started on Ty 6 years ago and I have a standing order to go to the ER if my temp is over 101 for more than 2 hours with still taking meds for it. And I have been to the ER twice for this - was just a bad cold once and was an upper respiratory infection once, but still they looked at me like "why are you here?" Those are the only two times I have been ill. Which is pretty good since I work with sick kids for my job. I wash the heck out of my hands!

I had meningitis years and years ago, and in my opinion, that what started the MS. My body just couldn't turn off after it was done fighting the virus and kept going... Just my own theory.

I got the shingles shot. After my neuro refused to give it to me, I researched it and could find no proof that it hurt you and asked my PCP doctor if he would research it for me and get back to me. He called the CDC and they recommended I get it, that the risk for getting shingles was greater than the risk of getting a live immunization with Tysabri. I shared all this with my doctor, and now he has all his patients who have had chicken pox to get the shingles vaccine before they start Tysabri. He still will not give it to anyone already on it. It seems from these message boards it is about 50/50. So, if you have had chicken pox in the past, I would get it before you start Tysabri. If you haven't had chicken pox, you can't get shingles.

Let us know what you decide. Hard choice isn't it. Wish I could tell people, just do it. But everyone has to decide for themselves. Keep reading past posts. It has not been a good choice for some. There can be some pretty bad side effects. I have just been lucky I think.

[allHailye2]

LL60 - I've had shingles twice & I'm only 35! I don't know if I could handle another bout! I talked to my PCP about the vaccine but she said I cannot get it due to my age, no exceptions.

All of the dr's I've seen think I got shingles this last time (in February) due to my low lymphocyte count. It is improving tho since I stopped tecfidera.

I had a neuro appt after I got out of the hospital & that's when he mentioned tysabri. So apparently he's not concerned about it. I see him again in a few weeks & I'll be asking him more questions.

[kelm10]

info

Allhailyee,

I would call the CDC or ask to consult a infectious disease doctor regarding getting the shingles vaccine at your age. Often, a chronic disease will trump that.

[LL60]

I agree with kelm, there are exceptions to every rule - and now you are the 4th person I know who has had shingles in their 30's!! Making people wait until they are 50 is ridiculous and risky. He even doesn't want you to get it while he recommending Tysabri?

I don't know what I would do. I fought for it long before I was even on Tysabri - two of the people I know who had it in their 30's were friends and it sort of freaked me out, but at that time my PCP said no way - I was only 44 at the time. Then there was a shortage and just other excuses, then I was on Tysabri and he said get it, but there was still a shortage and they didn't have it, then he changed his mind and said no don't get it. It was only after the CDC was called that I finally got it.
So you can give that a try too.

[allHailye2]

kelm10 - thanks, I will look into that