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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Positive JCV Virus And PML

Positive JCV Virus And PML

So I just tested positive for the JCV virus and I'm scared of developing the deadly PML (rare brain infection) with certain MS medications. JCV levels range from .04-6 so it’s very important to know what level you are since that increases you chances. I’m 3.31 and considering if you are 1.1 or higher, you have a 1 in 118 chance developing PML so I’m not willing to take that risk. It appears my only "safe" options are injections (interferons like @Rebif, Copoxone, betaseron, @Avonex), @Aubagioread more

A MyMSTeam Member said:

6 month update - I’ve been on @Aubagio for 6 months now and all is well!! My liver enzymes were damn near perfect month 5 routine bloodwork and seem to have leveled out. (Levels were normal and as low prior to medication!!) I have my 6 month bloodwork tomorrow. I only have one annoying side effect... the hair thinning that hasn’t let up or improved yet.... check out this pic from washing my hair and how much I loose. I’m starting Biotin and Keratin supplements this month so hopefully I don’t Loose more hair. 😱 But I decided to stay positive and if I’m bald but healthy - that’s all that matters!!! I would love to hear how everyone else is doing on @Aubagio.

edited, originally posted over 4 years ago
A MyMSTeam Member said:

@A MyMSTeam Member If read my Story or anything else I’ve written you’ll notice I’m always saying good things about Aubagio because I really feel this MS treatment turned the tide for me at this point in my MS journey, and I want to make sure other people at least consider it when they’re looking at all the different MS treatments available to them.

I don’t know what the future holds, no one does. But as long as Aubagio keeps working and my liver doesn’t decide to have any problems where I’d be forced to take a different medication, I’ll keep taking my little blue pill once a day in the morning with my breakfast.

posted almost 5 years ago
A MyMSTeam Member said:

I too carry the virus so it felt like a battle to find the one right for me. ive only tried one other/ plegridy and the shot was terrible with fever and headache. im on aubagio now and I trust it. there have been no ill side effects and its only one small pill a day. for us carrying the virus this is a good choice!

posted almost 5 years ago
A MyMSTeam Member said:

How do you know you're fine? Do you have routine MRIs of head, c spine and t spine to make sure your lesions are not growing are multiplying? The disease will progress no matter what and the whole point of medications is to slow down the number of relapses and progression. I hate taking medications but this disease cannot be controlled with diet, lifestyle changes and supplements alone. 😕

posted almost 5 years ago
A MyMSTeam Member said:

@A MyMSTeam Member After Tysabri I tried Gilenya next, but ultimately it was Aubagio that did the trick for me with over four years being relapse-free so far. Aubagio was covered on my insurance and since you’ve already tried two other MS treatments without success it should be easier to get one like this approved by your insurance I would think; plus it’s one medication where you take a pill only once a day, no shots or IVs involved. Gilenya is also a once a day pill if you were curious about that one too. Basically check out all your options with your neurologist before making a decision, doing some online research yourself too helps with the process because the more you know the better you can actively participate in your treatment. Be Your Own Advocate and Stand Up for Yourself!

posted about 4 years ago
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