DMT'S

[Bkboo]

I went from Tysabri to Gilenya to Ocrevus and now going back to Tysabri...sigh I have the JC Virus, but my Neuro stated that I can do Tysabri every 6 weeks without much risk. Anyone experience the 6 week Tysabri and with JC virus?

[Guava69]

Hi Bkboo. I've been on Tysabri for 7 years and I'm also now jc virus positive. I started having my infusions every 6 weeks earlier this year and everything is going well. Appreciate fewer trips to the infusion site and I physically do not feel any difference with the longer time between infusions. Hope this share helps.

[Bkboo in reply to Guava69]

Im confused did you get the Virus while on Tysabri? I got tested before I started and had the JC virus which I heard was common for many.

[Bkboo in reply to Bkboo]

Im going to try it every six weeks....I will ask my Dr about doing it every 8 weeks, hmmm, that would be great and your right less trips

[Guava69 in reply to Bkboo]

I was tested positive several years after being on it. Since everything was going well and the amount that was in my system was almost nominal we agreed to stay on it with monitoring through the blood test and MRI. I actually just had a follow up with my Neuro on Wednesday and I'm going to have some blood work done and a MRI later this year. If all goes well then I will start Tysabi treatments every 8 weeks

[1RiskyRich]

I went from Tysabri to HSCT. My doc said cause I was JC positive I wouldn’t be able to stay on Tysabri for long. Instead of playing ping pong with meds I decided to fundraise & go abroad for my HSCT treatment. If you can find a way to do it, do it. My last Tysabri infusion or any MS medicine was on 2/2/2016. Best MRIs since I was diagnosed.

[kdali in reply to 1RiskyRich]

HEY!!! How are you?!

[1RiskyRich in reply to kdali]

I’m doing good. I highly recommend the treatment. I’m 3+ years and my fatigue, my heat issues & brain fog are a thing of the past. The treatment should be offered to everyone when 1st diagnosed. It has added a lot of the quality of life thatS took away.

[CalfeeChick CommunityAmbassador in reply to 1RiskyRich]

1RiskyRich I am so happy for you! Last time I recall seeing you here was just about a year after your HSCT. Thank you for the update!

[1RiskyRich in reply to CalfeeChick]

Hello. A lot has changed in the last 2 years. I don’t spend a lot of time online. My oldest graduated college, found a great position in Texas, he moved out there so my wife & I sold everything & also moved to Texas. My youngest, who is in college in Florida graduates in February. Depending where he moves to, I would like to be half way. Hopefully he stay somewhere warm. I’m tired of the New Jersey weather.

[kdali in reply to 1RiskyRich]

Gosh, it’s great to hear from you!! 🎉🎉 I love that you’re too busy living life to be around here 🤣👏🙌🏻

We are expecting baby #2 and I got placed on Ocrveus before that happened, which I had some freakishly good effects from it.

Ty so much for the update! I hope to hear from you again in a few years, still thriving, maybe a marathon or two, maybe a grandchild or two 🤣

[Pia7 in reply to 1RiskyRich]

If you don’t mind, I would love more information about HSCT. I have been robbed of so much quality of life including my marriage of 25 years. What country did you go to, doctor name and if you don’t mind the cost. Really any information will be greatly appreciated.

[1RiskyRich in reply to Pia7]

I did my HSCT with Dr. Ruiz from Clinica Ruiz in Puebla, Mexico. There are a few more accredited HSCT facilities. Dr. Ruiz in Mexico and Dr. Federenko in Russia are the top 2 facilities. Dr. Burt is Chicago, Illinois is now taking time off to teach the treatment & write a book. Most accredited facilities have Facebook pages. If you Facebook look them up & ask to join. There is a lot of information in their “Files” section.

[Pia7 in reply to 1RiskyRich]

Thank you!

[Bkboo in reply to 1RiskyRich]

I don't think that would be an option for me but Im glad its working for you

[MS2014]

I loved tysabri, but I had to switch medications because I now have the JC virus. My neurologist refused to treat me with Tysabri once I got the virus.

[Raingrrl]

Hi Bkboo...I’m JCV+ and was on Tysabri for 5 years. My neuro put me on an every 8 week cadence for the last year I was on it. I stayed stable without flares just like the other years on Tysabri. In fact, once I was doing infusions every 8 weeks, my PML index went down. I thought that was a good sign and tried to talk my neuro into letting me stay on it but he insisted I switch to Ocrevus.

[Bkboo in reply to Raingrrl]

I was on Ocrevus and felt awful but many people love it Good luck!

[Bkboo]

every one has the virus, but levels of it is key...