Tysabri??

[Zanytoo]

My daughter had been put on tysabri infusions once a month. She was diagnosed as severe RRMS and tested negative for the JC virus. Do any of you have experience with tysabri? The neurologist will test for JC virus every 6 months. Seems a bit scary!

[Kenu]

I was on Tysabri for over seven years and loved it. When I got stage four throat cancer ♋️ I had to quit. Did really well on it 👍🏼😉🙏

[Zanytoo in reply to Kenu]

Thank you for your reply. That makes me hopeful on the tysabri. I'm very sorry about your cancer. How are you doing?

[Kenu in reply to Zanytoo]

Just plugging along and looking for better days 👍🏼🙏😉

[Royjr]

Been on Tysabri for over 13 years now. Haven’t had any problems yet.

[Zanytoo in reply to Royjr]

Wow! I never realized how long a person could take that drug. Thanks for your reply. I appreciate that.

[Lynn2202]

My daughter started tysabri 7 yrs ago, aged 25 and as a nurse I was very apprehensive about the risk of PML and at the time it was a 2nd line treatment. I questioned why she couldn't have a 1st line treatment and the neurologist told me it was the best treatment available at the time for severe acute MS. Thankfuly it has been really effective. I wish your daughter all the best with xx

[Zanytoo in reply to Lynn2202]

Thank you for responding. That's encouraging to hear. I hope your daughter continues to do well.

[MsBoo]

I was on it for almost 20 years. Held my relapses (all but one) off.. was taken off because I went to spms... but no problems with the Tysabri and I tested positive for the JC all thru it.

I would say that Tysabri is a great drug.. at least for me!

[Zanytoo in reply to MsBoo]

That's great to hear! I thought JC positive people couldn't take that drug because it put them at risk of PML. So far my daughter's had 3 injections and her condition is improving.

[MsBoo in reply to Zanytoo]

I was asked when they found out if I wanted to continue and I said yes.. I am a 100% disabled Vet and because I was in a test area to see if the Military was going to have this drug available to the Vets I said yes.. and they said yes... so they kept me in the program.. me and some others that wanted to stay.. and none of us came down with the dreaded PML. Thank the Lord every day for the chance to keep this drug..

[Zanytoo in reply to MsBoo]

That was a super honorable thing to do for Vets. Thank you.

[JSSimp]

Praying for great results🙏🏾

[Jmhnath]

I had a very active first two years of MS (11 lesions on one brain MRI, optic neuritis, etc.). My neurologist put me on Tysabri, and it was very effective. I stayed on Tysabri for three years until I tested positive for the JC virus and the risk of PML became too high.

My mom and I were reluctant to try Tysabri at first. The risk of PML is scary! In the end, the risk of permanent damage from MS lesions, and reassurance from my doctor and another doctor we consulted, made it worth trying for us. I'm on Ocrevus now, and I haven't had an active lesion since I started Tysabri in 2014.

[Zanytoo in reply to Jmhnath]

Thank you for sharing that info. My daughter was just diagnosed this February and the neurologist said tysabri was her best recommendation to treat the severe symptoms, including optic neuritis. It does seem to be helping.

[Jmhnath]

I’m so happy to hear that. Feel free to reach out to me directly if you have any further questions or want to chat. I hope the treatment continues to help!

[Zanytoo in reply to Jmhnath]

😀

[sashaming1]

I used it for about 10 years with success (no new lesions) until I tested positive for the JC Virus (which is hard to evaluate if it is a real problem or just minimally increases the chance of PML - maybe the increase is still worth it). No Tysabri issues. Then went to Lemtrada.

[Zanytoo in reply to sashaming1]

I'm glad to hear from you and that you had no tysabri issues. Thank you for your reply. If it works well it'll be worth the high cost. It doesn't seem right that effective drugs are crazy expensive.

[Texandyroe]

I’ve been on Tysabri for well over 12 years now, and have had no issues with it. And to make things better, have had no new lesions or growth in existing lesions since I started on Tysabri.

[Zanytoo in reply to Texandyroe]

Thank you for sharing. My fingers are crossed that it will be as effective for my daughter.

[Tazmanian]

I was on tysabri for just over two years I loved it but I tested positive for jcv and had to change, good luck and enjoy tysabri

[Zanytoo in reply to Tazmanian]

Thank you. I really hope it helps my daughter.

[twooldcrows]

good luck ,i don't know much about it ...take care and have a great and wonderful life....love and much happiness...

[1yoyo]

I am on Tysabri for 9 years - doing well - GOOD LUCK!

[Zanytoo in reply to 1yoyo]

I'm so glad to hear that. It's encouraging. Thank you.

[haileyrileyrex]

I have been on tysabri for 3 years, my ms is stable. I've had no issues since being on tysabri.

[Zanytoo in reply to haileyrileyrex]

That's awesome to hear and gives me much hope for my daughter. Thank you.

[wolfmom21fl]

I was on Tysabri for a 2 years. It was magical! Don't over think the JC virus thing too much. The majority of immuno-suppressants prescribed for MS come with the same box warning about the JC virus and PML. Yes it is a serious disease to get but the JC virus antibodies that they test for would need to go VERY high before you would need to be even a little concerned about it. Your daughter is negative right now... Take full advantage of that fact. This medication, in my opinion, is THE VERY BEST MS treatment available right now, bar none. If my own JCV titers did not go so high now I would still be on it. It truly is a magical DMT with very few side effects and great safety record. Good luck to your daughter and please keep us posted

[wolfmom21fl in reply to wolfmom21fl]

BTW, when i started on Tysabri, I had over 120 lesions in my brain because I had been undiagnosed until my mid 50's.. the Tysabri actually healed some of those lesions and that showed up on MRI's thoughout the time i was on the drug. "Magical"

[Zanytoo in reply to wolfmom21fl]

That's pretty fantastic!

[Zanytoo in reply to wolfmom21fl]

That really is magical. Thank you for sharing. That's very encouraging.

[kycmary]

Hi I was on Tysabri & off & on for over 11 yrs. Loved it was the closest thing to a cure I ever saw. The Neuro I had back then said the chance of pml was kind of like the chance of anything else happening in life ( getting cancer, heart trouble, or run over crossing the street) I loved Tysabri it kept my MS at bay for several yrs. He retired been thru several since I am 28+ years of MS since dx. I am on Ocrevus now as only have to have treatment 2 times a yr instead of every 4 weeks. 4- 41/2 hrs. 2 times verses 2+ hrs every 4 weeks. I am doing great on O & it's my choice DMT now! praying for your daughter God bless your family. Mary

[Zanytoo in reply to kycmary]

I really appreciate your reply. Thank you for the encouragement.