JCVirus
I have ms since the 80’s on Tysabri and ... - My MSAA Community
I have ms since the 80’s on Tysabri and now am JCVirus positive anyone have any suggestions for me my last email didn’t have any response
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Krystalbaby
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Jesmcd2CommunityAmbassador
Hi Krystalbaby here is a website with the meds, there is also a chart that you can check out! mymsaa.org/ms-information/t... I personally am JCV positive also and taking Ocruvus!
I'm sure others will join with what they use.🤗💕🌠
Hi! This happened to me after six years of tysabri. I really liked this medication and was sad. I switched to numerous other dmts over years, but never liked another one. Let us know what you decide! 🤗🤗
Jc positive means you had to switch from tysabri? I am jc positive and im on ocrevus
Well we reduced it to every four months maybe I should talk to another neurologist
Hi there... I have had MS since (they say) I was 17.. am 64 now.. was on the "test" of Tysabri... was on it for over 15 years.. then new neuro came to the VA, and because I had had no flares in those 15 years she said that I had the progressive and took me off of Tysabri.. ever since I started the initial start of Tysabri I have tested positive for the JC virus, was asked if I wanted to continue taking it and I said yes.. I'm on Ocrevus now and of course am still JC positive.
It is your choice.. you should talk it over with your dr.. and do your research on it...but ultimately it is your choice.
Best of luck to you
🤗🤗🤗
There are different levels of "Positive." And only a small chance of getting PML - especially if you are a "Low" Positive (you may want to find out). Some people think it's worth the risk so find out more information. Talk with your Neurologist.
I started out on Avonex, then Betaseron, Copaxone and Tysabri. Loved the Tysabri. I poped JC virus positive about a year and a half after I started. Stayed on the Tysabri until the FDA OKed Ocrevus. My neurologist checked my JCV tiders every 3 mths. I guess they had gotten really high because he said the I was playing Russian rollette. By the way I had mono in high school
I had mono too at 13 first episode of ms at 20 thanks for sharing
oh man.. that really sucks.. same happened to me when i was on Tysabri. I was JCV borderline was the way it was told to me.. i wasn't positive but i wasn't negative either.. then one month i went in and my titers had skyrocketed from .40 to 1.98.. they pulled me off of Tysabri immediately because my white counts had also skyrocketed to over 30K.. they sent me right to the hospital for MRI's to make sure I didn't have PML.. they were all afraid.. they had me terrified
Yes mine is low
I am also jc positive and on Ocrevus now since 2016.
I liked Tysabri and after 2 years I tested jcv positive after several other dmt's I'm on ocrevus ( ocrevus is great only twice a Year)
Hi, I don't often send comments , so bear with me. Have you gone to any of the ms event dinners about Tysabri? They have alot of good information. Many people keep taking the Tysabri and carefully watch their JC Virus levels to see if it increases. I did well on Tysabri, but my neurologist wasn't very good with the fine points of this treatment. You have to have a neurologist that keeps up with the latest information to make the best decision for you. I switched to Ocrevus for a few years and now I've started Kesimpta. I hated the trips for the IV infusions and Kesimpta is a monthly injection. Same "type" of CD20 therapy as Ocrevus. I had a terrible bought with CDiff and my veins are now a problem. Beware the Tysabri and Ocrevus are medical coverage and the Kesimpta is a drug coverage item. This may be very different in cost.
good luck.
Thank you
The Drug vs. medical coverage applies only to the actual infusion itself. The drug itself is covered under you pharmacy benefits. It also depends what type of insurance you have. Medicare has Part D which covers the drug then Part B covers the infusion.. so they are separate and apart.. I always had my infusions the same day that i had my doctor appointments. Some types of insurance combine deductibles with pharmacy and doctors together and one fill of your medication covers your deductible and sometimes your entire out of pocket for the year. When I get my first fill for my MS meds on my Part D plan it throws me into the level 4 catastrophic coverage and i have no co-pays or anything for the rest of the year
Never had to pay for the drug .the hospital paid and it was covered under my supplement.
thats what i meant when i said it depends on what type of coverage you have .. with Medicare, your Part D or pharmacy benefits pay for the drug then wherever you go for the infusion gets paid by your Part B or doctor care coverage.. Even if you go to the hospital for the infusion it would be outpatient and covered under part B with Medicare.. With some other Insurance companies they sort of combine everything together for deductible and then separate things for co-pays so it really matters what type of coverage you have and then there are programs that the pharmaceutical companies have if you cannot afford your medications or co-pays.. I had gotten one of my drugs on an emergency basis when my Part D plan messed up last year in Jan and didnt transfer me over to a new specialty pharmacy in time to get my script refilled.. Novartis sent me a month's supply of meds so i didnt miss any doses
I've been on Tysabri for almost 10 years and still jc negative. I have discussed what to do if or when I end up positive & his advice is Ocrevus. That seems to be the route most people take. Good luck!
you are so lucky! can i rub your arm? LMAO
I was on Tysabri after Tecfidera failed. For me it was magical. It stopped the relapses and helped to heal many lesions. Then I got sick from a cootie that the grandkids brought home from school one day shortly after the school year started and suddenly my white count spiked to almost 30K, i was running a fever and my JCV status went from barely detectable to a startling 1.98 seemingly overnight. I was pulled off of Tysabri immediately and sent for MRI's and other blood work to be sure i was not developing PML.. turns out it was just a bad cold or possible flu but no one knows why my JCV status spike and to this day, nearly 4 years later remains elevated. I am no longer eligible to receive Tysabri which is a shame because it was THE ONLY medication that actually worked for me... BTW, i think the cutoff for receiving Tysabri with a JCV positive status is 1.50.. So if you are positive and your titers are still below this level you are still eligible to receive it but only you can decide if the risk is worth taking
Thanks for the info
