Forum

Tysabri VS Avonex

Hi.

I have been on Tysabri for 2 years and I’ve never felt so good!

three weeks ago I was told that I have the JC Virus and now have a 1 in 120 chance of developing the dreaded PM of L. My neurologist has said that he is happy for me to continue taking Tysabri (with a new and updated consent form) or move on to Avonex.

1 in 120 doesn’t seem too bad, does it? I was told it is the same chance of being in a car crash but if people drive like they do in my home town, I am screwed, lol.

Jokes a side - my neuro also said that I have about 3months (now about 1-2months) before I have a major relapse. I can’t make a decision.

I have a fairly new (and amazing) job so I refuse to start relapsing again!

Advice would be much appreciated

xx

Oh, he said that I will relapse without any treatment in 3months

x

It is so hard to get one’s head around these statistics. Personally, I think we are generally inclined to give more weight than they deserve to risks with a low probability (like PML) and too little to risks that have a large probability (like a disabling MS relapse that causes permanent damage if you have highly active, aggressive, RRMS - like you and me - or being made ill by smoking if we happen to be smokers, for instance.)

You’ll have guessed where I’m coming from here!

You have some very useful information to help you decide: a two year track record of how you do on Tysabri. You also, I assume, have some time before that to compare with.

I’ve been on Tysabri for only a few months. If I got two good years with it, and someone suggested taking it away, JC+ or not (I haven’t had the test) I think I would bite them.

Having said all of which, 1 in 120 sounds pretty bloomin’ high to me too and i wouldn’t like it either. That’s the figure they told you, I assume? Jeez…

Good luck with your decision. Some of these days I might be in the same boat myself - I’ll be back to ask for your advice!

Alison

x

Dixie.

I can’t say about coming off Tysabri and going on to Avonex but I can say about coming off Avonex to go onto Tysabri while I was on Avonex and this is just me other people do great on it I was relapsing every 4 or 5 weeks even ended up in a wheelchair but I started Tysabri back in 2008 and haven’t relapsed since and I’m out of a wheelchair and walking.

I never had the test for the JC virus for the very reason your asking this question and thiinking about coming of Tysabri, for me Tysabri has worked wonders and giving me my life back I honestly don’t care if they told me the risk of getting PML was 1 in 10 I’d no quailty of life with my MS before Tysabri I’d never risk going back to that again plus there studies going on at the minute that think being on Tysabri and coming off can cause whats called the rebound affect If its true or not I personal wouldn’t be taking the chance of my MS coming back a lot worse then it ever was :frowning:

Mark x

Thanks Alison!

I most definitely felt like biting the doctor when he told that my test for the JC Virus came back positive. I was not a happy bunny.

After I was on the injections - Beta, Avonex, Rebif I came off them and whatch know, I was relapsing every three months plus I was told I had rapid relapsing R&R. I feel that the injections only put the relapses on hold because I still had lesions develop - 7.

I seem to be swaying more towards going back on Tysabri. I don’t want to leave my decision for too long. Last time I came off all treatment I was relapsing every 4 months.

You won’t regret starting Tysabri! I have never felt so healthy and relapse free!!

x

Hi Mark.

Thanks for replying. I’m so glad that Tysabri is working for you. When I was on it, I felt as healthy as anyone else. I was only reminded that I have MS when getting my infusion done and that only takes a few hours, ONCE A MONTH.

If I had the choice I probably wouldn’t have wanted to be tested for the JC virus either. Ignorance is bliss!

I’ve heard about rebound but I don’t think any studies have been done on it yet. I’d be interested in knowing the outcome.

I relpased in my leg around 2yrs a go but I was given steroids which luckily sorted it out; however that must have ben the worst relapse! I don’t want to be in that state again.

I’m def swaying towards Tysabri!

x

Hi Dixie,

Check out this link its in an America news paper this is a link from there website there was a small studie down in Amsterdam about the affects of coming of Tysabri and the rebound affect.

I read somewhere else that Tysabri is like a dam holding back the MS and if the dam breaks i.e you stop Tysabri all the build up can come rushing back worse than it did before I dont know if thats true or not but its a risk I’m not willing to take I’d like to stay on Tysabri till the day they find a cure.

I’m really sorry if I caused you any worry buy telling you that I really didn’t mean to as you said sometimes Ignorance is bliss :slight_smile:

Mark x

PS I better give you the link lol

http://www.medpagetoday.com/MeetingCoverage/ECTRIMS/29212

I’m not on Tysabri so really can’t advise on that, but I am very curious about why your neuro has given you Avonex as the alternative option. Avonex is the slowest DMD to start working properly and is not even the most effective when it does. Rebif 44 is the most effective overall and I think that Copaxone and Rebif are the fastest to act.

If you do decide to come off Tysabri for a while, then I would have thought that Rebif would be a better option to Avonex. (Btw Rebif 44 is more effective than Rebif 22.)

I’m not a neuro though so maybe there are other reasons for the choices?

Good luck with the decision - not an easy one in any shape or form

Karen x

Hi Mark.

Thanks for the link. I was a bit shocked to found out that the disease advances much quicker when coming off treatment, I’m quite gutted that I wasn’t warned before esp since I know that that the treatment isn’t a long term solution.

This evidence alone makes me want to go back on Tysabri,

Ha, ignorance is bliss but at the same time better decisions can be made if we have ALL the info :slight_smile:

Thanks

V. glad that its working for ya!!

x

Hi Karen.

I was offered Rebif but I was depressed so he refused to let me go on it. Saying that, I think I got confused and throught Rebif was the other sub cut injection (the one that you have to mix yourself).

Thanks for the information! :slight_smile:

x