Multiple Sclerosis MRI

[Chrissyrose76]

I have had  RR multiple sclerosis since I was 10 ish diagnosed (finally) in 2008. Had routine MRi of head and neck last month, everything is stable for 2 years now. Thank you Tysabri!  My  question is  the impression of my mri stated T1 and  T2 disease burden is  at least moderate ( written for head and cervical MRI). Also JCV negative this whole time can I stay on Tysabri  indefintely as long as I am negative?

[SarahL2491]

Hi Chrissey
I'm an RN, retired due to MS, and am on Tysabri, coming up on my first year anniversary soon (months seem to fly by) and I am JC+

I've been + since I started, and my neuro started me on it anyway.  I've had a battle with side effects but he keeps addressing them and is strongly uring me to stay on it.

I think many of us, if we had a time line further back, could pin point our origin of MS at a younger age.  My neuro is very good with pediatric patients and tells me he has many who got it early.

Welcome to our forum!

[Chrissyrose76]

I was on Copaxone and rebif prior and had flares. 2 years on Tysabri And no real side effects, just the wearing out a few days before next infusion. My neuro loves the "juice" so I imagine he will keep me on. I used to be a NP now on disability and I can't totally understand my MRI results.  Just frustrating. I am only getting tested once  a year for JCV. I have been taking my health a lot more seriously and just lost 50 pounds. I currently have a cold otherwise I would be at the gym now!
Chrissy

[Cosmobirdy]

Hey Chrissy,

So have you been on Tysabri for 2 years now?  It's great that you are JC negative!  When was the last time you were tested for the virus?  The FDA has just recommended that people on Tysabri who are JC negative should be re- tested every 6 months, since it is a common virus that you can be exposed to at any time.  So I would definitely keep up on that if you stay on Tysabri.

Were you on any kind of treatment prior to Tysabri?  Use of other immunosuppressants before Tysabri are a risk factor for PML, but this does not refer to the standard first line DMDs.  Have you had any side effects in your time on Tysabri?  It's great that your MRIs are stable!

Have you talked to your neuro about remaining on Tysabri?  Everybody is different, so there are a lot of factors that play into a decision to remain on it or stop.  there is also the possibility of rebounding when stopping Tysabri that should be taken into account.  

If you stay JC negative, your risk of PML is very, very small.  There's just not an easy or quick answer with meds as powerful as these.  There are other significant risk factors with Tysabri, aside from PML, so that would probably play into your decision, too.

Keep us posted on how you do, and feel free to ask any questions - there are several people here who use tysabri and could share their experience and knowledge.

Rita

[sllowe]

Hi Chrissy,

I'm not-so versed in Tysabri, but there are users who are. I will point this out to them because they may not notice the question.

I'm glad you are stable. It's so much easier to deal when not constantly or in on and off attacks.

Thanks for joining us!
-shell