13 years, new JCV+, what to do?

[pennstater]

Hi All,

In my 13th year on Tysabri. Switched to 6 week dosing about 8 months ago, ironic that I now converted to JCV+. My titer was 3.24. I just got the results yesterday, so have not spoken to my neuro yet.

Seems like I have a few choices:
1. Stay on, extend to 8 weeks, accept the PML risk.
2. Change DMTs
3. Stop DMTs all together.

I am 60, have been stable. My thoughts previously was to stay on til at least 65. Now, not sure what to do.

What have others chosen to do?

Thanks!

[KoKo]

Hi Kathy!

That sounds like a tough decision to make, for sure.

Hope you find the decision that works for you.

Wishing you the best.

Good luck!

[pennstater]

Thanks KoKo. My neuro wanted me to retake the test to rule our a false positive. Just did yesterday, so once we get the results, my neuro will catch up with me and discuss his thoughts.

[KoKo]

Hey Kathy

A false positive result would be most welcome, and hopefully that will delay the tough decision making (at least for a few more years!)

[Raceya]

Super glad to hear you retested! That is what I was going to say. Extremely weird to jump from No JCV, to 3.24! I’m undetermined, at a .34, which fluctuates slightly every 6 mo.. Also, I’m 58, and plan to take Tysabri until I die. I don’t know what I’d do without Tysabri! Besides spin like a top, uncontrollably! Hoping you get great news!

[Marco]

Also, I'm 58, and plan to take Tysabri until I die.

I'm on rituximab, but generally feel the same way you do. I'm all for taking any of the drugs with possible neuro-protective benefits until I expire.

[Marco]

Thanks KoKo. My neuro wanted me to retake the test to rule our a false positive. Just did yesterday, so once we get the results, my neuro will catch up with me and discuss his thoughts.

I'm glad that you are retaking the test and hope it comes back negative. That sounds like the most prudent thing to do.
If you get another high-titered result.

A lot of Tysabri patients transition to b-cell depleting medications after their JCV numbers creep up too high. Monthly self-injections, or infusions every 6 months is a lot easier than the tysabri schedule. I wish you well.

[REG53]

Hey Kathy, I tested positive and I switched to Ocrevus years ago and I have been happy with it. I certainly hope you did get a false positive.

[pennstater]

Thanks KoKo, Marco, Raceya, and Reg53. Hoping to hear late next week the latest test result.

I have thought about Ocrevus. Neuro had mentioned Kesimpta, but that was before the positive test. I was having an insurance issue, so we discussed a few other meds. I do hesitate switching to a b-cell depleting, as I catch everything that goes around as it is.

So for now, I sit back and wait. Appreciate you sharing your experiences and well wishes!

[lukeduke]

I have been on Tysabri for about eleven years. I started in 2012. So far every time they have tested it I was JCV negative. I say that if I turn + for JCV then we have to switch to something else. I would probably go to Ocrevus or another infusion. I don't really want to go back to giving myself injections.

[pennstater]

So my JCV stratify retest came back positive again at 3.14. I have a call into my neuro to see if I need to come in and discuss or just phone.

Interestingly enough, I have learned there are 4 gene mutations that up your PML risk 10 fold. So also checking with neuro on getting the genetic testing completed and what it would mean for me taking Tysabri and other drugs with a PML warning. Will post more as things evolve.

[oceanpride]

Sorry about all of this for you Pennstater .
It just seems that with MS and all the drugs,
that we can be damned if we do or damned if we don’t. Just saying because I know it’s a hard call

[pennstater]

Thanks oceanpride . Definitely feels that way right now. I know that in the end, it will work out one way or another. No crystal balls, so all we do is just make the best decision we can with the information known at the time.

[KoKo]

So my JCV stratify retest came back positive again at 3.14. I have a call into my neuro to see if I need to come in and discuss or just phone.

Interestingly enough, I have learned there are 4 gene mutations that up your PML risk 10 fold. So also checking with neuro on getting the genetic testing completed and what it would mean for me taking Tysabri and other drugs with a PML warning. Will post more as things evolve.

Hey Kathy

I'm sure the retest results are disappointing for you, as Tysabri has worked well for you.

The gene mutations factor (that increase PML risk ten-fold) is very interesting. Hope you can get the genetic testing.

We'll be following your new journey with concern and interest.

Thank you for sharing this with us.

All the best to you Kathy.

[REG53]

I'm sorry your test came back positive again. You are wise requesting a genetic testing.
I wish you well.