13 years, new JCV+, what to do?

[pennstater]

Thank you KoKo and Reg. I called to cancel my infusion for next week and found out that the center and the doctor's group had not received the lab report.

I did get the genetic testing kit and sent it back today. Think it takes a few weeks. In the interim, I will follow up with neuro group Monday since I sent them the report late today.

[Seasha]

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

I wish you well too, pennstater Keeping you in my thoughts!

[pennstater]

I had a visit with my neuro yesterday.

I have to get brain (with and without contrast) and c-spine(just without contrast) MRIs. Using this to make sure no early PML, as well as baseline for whatever we do.

His personal preference would be for me to switch to vumerity, but is open to looking at the genetic testing results, and if favorable, and I agree to 8 week dosing and repeat MRIs every 4-6 months, potentially allowing me to stay on Tysabri. He is also calling Biogen to get their take on the genetic testing/PML link, as well as the organization offering the free testing. It was a small study, with majority of patients of European ancestry. So the study results do fit me.

I get the feeling if I am adamant about staying on it regardless, he would agree to it since the extended interval dosing cuts the PML risk 82-85%.

We both ruled out the b-cell depleting options since I do volunteer at a food pantry, attend church, go to a gym, and other social activities.

Although vumerity has a small PML risk as well, he is more comfortable with that risk since there is a hard and fast cut off based on blood test results, where Tysabri is a crap shoot - even if you minimize the odds, the risk is not zero.

So I should get the results of my genetic testing by mud-March. I will be at the mercy of the insurance approval and then the scheduling department for the MRIs.

Since you shouldn't just stop Tysabri without something else due to rebound risk, we agreed I would get my infusion in 2 weeks, which would be an 8 week interval. Glad since I also have a port - I don't have to worry about getting it flushed.

Lastly, we talked about the option of just stopping the DMTs all together. It seems he would be ok with that as well. Not his preference - he did say if I was 5-10 years older, he would definitely be more comfortable with that option. At 60, he feels a little too young. But he also acknowledged that at 30+ years having MS, not starting meds until 13 years after first relapse, stable MRIs for 14 years, I may be out of any active MS phase anyway. But again, it is a chance, as no way to know.

I go back to see him in 2.5 months. I am to forward my genetic testing results and he will be in touch after that. In the interim, any small change in health, supposed to let them know. I guess so they can evaluate if potential PML.

So basically status quo for now.

[Marco]

So basically status quo for now.

Thank you for the update.
There doesn't seem like one clearcut choice.

I'm glad that you and your neurologist are working in tandem.

I wish you well!

[pennstater]

Thank you for the update.
There doesn't seem like one clearcut choice.

I'm glad that you and your neurologist are working in tandem.

I wish you well!

Thanks Marco. Definitely no clear cut choice. Trying to get to the point I feel educated enough to make a decision and comfortable enough to live with that decision whatever the future may hold.

Grateful that my neurologist is working with me as well. He was independent, now works for a large hospital group. Their protocol is to take me off Tysabri, but they give neurologists some discretion.

[KoKo]

Hi Kathy!

Thanks for giving us your update!

Several things to consider, for sure.

Keep us informed as the situation evolves.

All the best to you, Kathy!

[Kimba22]

Good luck making a decision, Pennstater. Please continue to keep us updated. Wishing you the best.

[REG53]

I wish you well pennstater

[pennstater]

Thank you KoKo, Kimba, and Reg. Appreciate all the warm wishes.

[pennstater]

Genetic testing came back - I carry 0 of the 4 variants that raise the PML risk. Great news. Of course it comes with a caveat that it doesn't eliminate the PML risk.

I get my 8 week infusion this Wednesday and have MRIs scheduled for 3/19. Also have infusion 5/1, then see him 5/3. Guessing if the MRI does not show anything concerning, and blood work stays ok, will follow thru and discuss in more detail 5/3.

[mike423]

PENNSTATER, I WAS JUST TELLING MY WIFE AS U BEING AN ADMINISTRATOR ON THIS SITE, U HAVE ALWAYS BEEN MY GO TO FOR ANYTHING MS RELATED. IM JC+ ALREADY SO I REALLY CANT RELATE, BUT MY NEURO HAS ALWAYS SAID TYSABRI IS THE GOLD STANDARD OF TREATMENT. HAVING BEEN ON 7 DIFFERENT DMT'S, AND NOW ON OCREVUS, I'M REALLY PULLING FOR A FALSE POSITIVE RESULT. OCREVUS SUCKS, AND IM AT THE START OF THE CRAP GAP AND IM SORT OF OUT OF OPTIONS, SO HOPE BEYOND HOPE THAT U CAN STAY ON TYSABRI SO I CAN LIVE VICARIOUSLY THROGH U

[mike423]

[QUOTE=mike423;n515023]PENNSTATER, I WAS JUST TELLING MY WIFE AS U BEING AN ADMINISTRATOR ON THIS SITE, U HAVE ALWAYS BEEN MY GO TO FOR ANYTHING MS RELATED. IM JC+ ALREADY SO I REALLY CANT RELATE, BUT MY NEURO HAS ALWAYS SAID TYSABRI IS THE GOLD STANDARD OF TREATMENT. HAVING BEEN ON 7 DIFFERENT DMT'S, AND NOW ON OCREVUS, I'M REALLY PULLING FOR A FALSE POSITIVE RESULT. OCREVUS STINKS, AND IM AT THE START OF THE CRAP GAP AND IM SORT OF OUT OF OPTIONS, SO HOPE BEYOND HOPE THAT U CAN STAY ON TYSABRI SO I CAN LIVE VICARIOUSLY THROGH U "Many a man never fails because he never tries"