New to the group..worried about taking Tysabri.

[Ren3]

Hello everyone, I'm Renita. I just signed up to the group. I recently had a bad relapse and my dr is looking at starting me on Tysabri. I'm JC positive (0.75 titre); however, the dr said I'm at an ok level and she'll only put me on it for 6 months. I'm afraid to start it because of PML and with me being JC positive. Can anyone shed some light to ease my mind.

[Royjr]

Just because you’re positive don’t mean you’ll get PML. It just increases your chances. If the doctor feels that you’ll be fine on the Tysabri you should consider taking it. Few of the MS drugs can cause PML so don’t think Tysabri is the only drug that can cause PML. That’s my opinion.

Oh by the way, I’ve been on Tysabri for apx 10 years.

[Ren3 in reply to Royjr]

Thank you Royjr ! I am a very nervous person so my mind has not been able to rest. I've heard a lot of great things about Tysabri so I think it's a good medicine. If you don't mind me asking were you JC positive before you started Tysabri?

[Royjr in reply to Ren3]

No I was negative or on the very low side. I decided last summer to try an oral ms drug and it caused all kind of issues including becoming positive. I’m not saying it caused me to become positive but I did become during this time.

When I started Tysabri in 2008 I was worried about getting PML but I said I’ll put it in GODS hand and what ever HE wants, it’ll be. I’m not worried now but it’s in the back of my head and I think about it sometimes. I hope this answered your question.

[Ren3 in reply to Royjr]

Thank you again Royjr ! Your response really helps ease my mind. I pray on a daily basis and I believe in God so I know that He is the one that's in control. I've always been a worrier so sometimes the devil interrupts my thinking and brings those worried thoughts back to my head about Tysabri and PML.

I'm part of a small MS support group in my area and I heard that one of the ladies in the group became JC positive after taking an oral MS med. I'm glad that Tysabri is working for you and I hope that things continue to work for the best. Good luck and thanks again for responding and giving me knowledge. 🙂

[Royjr in reply to Ren3]

😃

[janetb1968]

Hi Ren3 I'm JC positive on the low side and I've had 2 doses of Tysabri here in England. I'm watched like a hawk at the infusion centre I go to and they are brilliant docs and nurses 😊😊😊😊. I was worried at first but I'm not now. U will be fine hun xxx

[Ren3 in reply to janetb1968]

Hi janetb1968 , thank you very much! The facility that my dr is at is highly ranked and that's where I'm getting my infusion so eases my mind a little. Glad to hear that you're doing well. Hope things continue to go well for you. Also, thanks for the encouraging words. ❤️

[janetb1968 in reply to Ren3]

U are very welcome honey xxxx take care and try not too worry ❤😎❤😎❤😎

[CalfeeChick CommunityAmbassador]

@Ren3 First of all, Welcome to the group! There are many here and we all share MS or are a caretaker of someone with MS. My first neuro was going to start me on Tysabri but I was concerned about PML also and chose not to have it. He said I could use it safely up to 18 months, then change to something else. I chose to start with another neuro anyway. I’m on “Symptomatic” meds to just treat the symptoms. Thinking about starting MS MEDS though. Keep coming back and let us know how you are doing. 😊👍

[Ren3 in reply to CalfeeChick]

Thank you CalfeeChick ! My neurologist said I had a record number of brain lesions (over 20) with this relapse I had in March. I am nervous about taking Tysabri because of the PML but I also don't want to get more lesions and/or have permanent damage. That's great that the symptomatic meds are helping you and keeping things under control. I will definitely keep everyone updated after my first infusion in a few weeks. Good luck with the MS med if you start one.

[Raingrrl]

Hi Ren3 ! Welcome to the group!

I am JVC+ and was on Tysabri for 5 years. I was JVC+ from the start but chose to go on Tysabri because Copaxone was no longer working for me and I can't take Gilyena. (5 years ago there weren't many choices at the level of Tysabri.) When you are on Tysabri and JVC+, the longer you are on it, the higher your risk of PML. So...my neuro and I would discuss alternatives every appointment. The alternatives weren't a good fit for different reasons. I finally agreed to try Ocrevus. I was reluctant to get off of Tysabri because I had been stable on it for the 5 years but it was time to try something else.

Good luck with whatever you decide!

[Ren3 in reply to Raingrrl]

Thank you Raingrrl ! My neurologist said it's ok for me to start it because she said my JC level is low. She's only looking to put me on it for 6 months then switch to another medicine because she said once you're on it for 24 months or longer the PML risk increases. Ive heard of a few people that take Ocrevus and I heard that they're doing good on it. How are you doing while on it?

[Raingrrl in reply to Ren3]

I've only had the first 2 half-doses which make up the first dose. Its too early to tell if its doing anything. I'm just hoping it keeps me as stable as Tysabri did.

[Ren3 in reply to Raingrrl]

Oh ok. I hope it works for the best for you. 🙂 Keep us all updated.

[Kenu]

Welcome 👍 I have been on seven different DMT’s over twenty three years. I changed as Ones quit working and moved on to the next as more DMT’s became available 👍 Was on Tysabri for seven years and did great 😃 Then Cancer came and I had to go off it😢. The only side effects was tired for a day afterwards. MRI was stable and no relapse. Now on Aubagio for the last year and doing well. No side effects and last MRI stable. This is a oral DMT. Good luck with your decision 👍🙏😉🐾 Ken

[Fancy1959]

Hello Ren3 it's Fancy1959. We are glad you have found and you are now part of our extended family! You have found a safe place to come and ask questions, voice concerns, and simply speak to others who truly understand what you are going through. This chat room is full of some of the most caring, kind, and compassion people I have ever met.

I too, early in my diagnosis, was put on Tysabri to keep my vision stable. I also had a JC virus positive titer but the way my disease blossomed early we went on it to stabilize eye disease. About seven months into the program I saw significant improvements. The day that tecfidera became approved I was switched to it. I stayed stable for about a year but the second-year things really went bad. My disability deteriorated dramatically and I will switch back onto Tysabri. The second time around I only stayed on in about 6 or 7 months and I started to notice some weird side effects that worried me to death. On top of that my JC virus titer was Rising. After the third month in a row that I felt really bad after the infusion I took myself off Tysabri. Long story short about 6 months later I finally got approved for ocrevus and I am currently going in for my second infusions on Tuesday. That will be my first full infusion and I can't wait to see how everything precedes over the next year year-and-a-half on ocrevus. Talk to your doctor about your concerns. We are not medical professionals. All we can do is share with you our experiences but we do not have the expertise to tell you what what to do or what not to do leave that up to the professionals please! Just remember you are your own best advocate for your own health care. If you are unhappy or are concerned about side effects or symptoms you must admittedly keep track of everything in a date book and then get to your physician as soon as possible with detailed facts that back up your case. I hope this helps. We're glad you found us in until we talk again please take care. I would like you to remember one thing and that is together we are stronger!

[Jenn29]

I am also jc+ I spent 1 year on Tysabri once I stopped using it I had a horrible relapse I couldn't do anything for myself. I had to start using a mobility scooter and stop driving for 9 months. I spent the whole time I was on the drug not having any major issues with it except I'm a hard stick so it usually took 4-6 tries before they found a vein to get my infusion started. I'm not sure if I'd make that choice again. My biggest issue was and still is my neurologist doesn't care about my feelings or concerns. I need a new medication but the Dr wants me back on Tysabri and this time I said no that's it. I wish you luck. The pml is such a scary possible side effect to so many of these ms medications. Good Luck and God Bless you.

[kycmary]

Hi Renita I just saw your post & I just joined a few days ago, I was on Tysabri for a total of 11 years & tested positive all that time. You can go out & pick 10 people average run of the mill who do NOT!! repeat do NOT!! have MS, several will test positive. The JC virus is already in a lot of people it is just NOT active. A Neuro told once that I stood about 10-15% change of getting the PML. I decided to come off Tysabri because I started having UTI's every month the week of my infusion.

[Jazzyinco]

A very warm welcome to you Ren to the most awesome supportive M.S. warrior family on the web!! I myself DO NOT believe in being a human pin cushion for 'THEM" AMA, or a hram-usuetical guinea pig either!😄 Si, i choose to manage it the M.onS.ter all Naturally!! Reading an awesome, very informative book by a woman who reversed her M.S. naturally, became a natropath, & it1's name is "Healing Multiple Sclerosis", by Ann Boroch, it's in E-book, on kindle or paperback on Amazon, it is really helping to understand. So, it's your body, & Please let it be your choice. I have done this for the past couple months, & i do feel a whole lot better. Many Blessings, Prayers🙏🙏💪& Love to ya!💙💛💗❤💚---Jazmine🌹💜Rose