I'm advanced/aggressive, anyone else?

[Chowda]

I haven't tried interferon yet, I will Wednesday for the first time and learn to inject.

My neuro called me today and said it came back I'm JCV negative, and made the offer. I accepted.

So, I'm gonna be on a special tysabri program to help $$$ but I will do Rebif for what she expects to be a month before tysabri.

I dunno guys, I haven't taken any medication but the side effects seem potentially serious. I'm really worried. Please enlighten me!

I guess my neuro feels I should go straight with this med because of the level of severity I'm at

[22cyclist]

Hi Chowda: You are lucky, because like me, you are JCV-. That means we have a very low to zero chance of contracting PML. If you have never taken any immunosuppresant before (like a drug for cancer), then you are okay for taking Ty.

This Tysabri site give a good explanation about the JC virus and PML. It also explains PML, the risks of taking Tysabri with and without being JCV- or +. It also gives a good explanation about PML and the length of time on Tysabri. Here it is:

http://www.tysabri.com/pml-risk.xml

On a personal note, I have been on Tysabri for 17 months. I counted on a calendar finally this morning so this is right. So this leaves me 7 more months until I face the dreaded 24 month decision whether or not to go off of Ty. I doubt I will though. I love Ty! It has made a huge difference in my life. I feel so much better, its incredible! I was on Rebif for a short while, and felt awful.That was worse than the MS! My MRIs have now become stable, no new lesions on Ty.

I wish you the best when you start your journey! We are here for you!

Take care
Lisa

[Kimba22]

Hi Chowda,

I agree with your neurologist and 22Cyclist. I think your best chances of slowing down your MS will be with Tysabri. I was on Rebif years ago and it didn't do as much as I needed to slow down my MS. It also made me very sick, and I finally had to go off it anyway. There's a medical reason I couldn't go on Ty any sooner than I finally did, but it seems to be helping slow down some further progression for me. I am also JCV- and going on 16 infusions. Just wish I could've gone on it sooner to prevent the progression I have experienced.

I also just noticed the url that 22Cyclist provided, for some reason, will now only take you to the Biogen Idec home page. So, you can find the same page by going to Tysabri.com and clicking on "Tysabri Basics", then "Evaluating Your Risk of PML".

Sounds like you are in the hands of an excellent neuro who wants to effectively treat your MS! Best of luck to you.

[KatieAgain]

Hey Chowda

I am the gal that does not believe that Tysabri should be used as a first line therapy. With the exception of advanced or rapidly progressive MS. And you seem to fit that criteria.

PML is scary, no doubt about that. But advanced MS is scarier. If you could have seen me last year, I was in a cycle of flares...horrible! Went on for 6 months. I was at an EDSS of about 6. I started Tysabri in October and I am back to an EDSS of 3. Quite remarkable.

Even though MS is a progressive disease...I got better. Is it temporary? Probably. But it is buying me time. And that is probably what you need is time. What you don't want to do is slip into a Progressive Form of the disease at this point.

I too am JCV- and I took my worry about PML and threw it out the window.

Hard decision you have to make...but I am certain it will be the right one.

BTW...I have done interferon...with all the other options out there...IMHO interferon needs to be permanently shelved.

Once you stabilize on Tysabri you can switch to Tecfidera. Or maybe something else will come down the pipeline.

[Chowda]

Thanks so much for the responses guys. I know my neuro is good, I'm just so... Well I guess you get it. Tysabri's website says it should only be taken when other meds are ineffective. So if my neuro is STARTING me on that as my first med, that just speaks to me about the severity of how I'm affected.

Question for both of you who are on Tysabri. You said it helped and you felt better. So some things could go away for a while. I'm just so depressed about being dizzy for the rest of my life. Please tell me what and how it helped you/felt better.

Late reply, sorry. I'm just so down lately. And ya, I'm really scared of PML too.