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Tysabri questions?

I was just wondering if those who are getting this treatment would mind telling me what lead to this ie. frequency of relapses and disability?

I am on Rebif and have been for only a couple of months but still going downhill quite rapidly. Was just thinking about if the Rebif doesn’t start to help over the next few months what could be next.

Thanks

I think if you continue to get relapses on Rebif you probably should be able to go to Tysabri… it says its for highly active RRMS and for those who 1st line drugs fail to help.

Are you still getting new relapses / new symptoms etc, or is it still flare ups of your regular symptoms?

Hi I have not been rescribed nothing yet, but his is one of 2 DMT my neuro looking at.excellent advice on this site & mistrust also your neuro and ms nurse Mike

Thanks mrsp83.

It’s hard to tell but as I have had new symptoms my MS nurse thinks I am having a relapse at the minute. That would be my 4th (possibly 5th) since last January. I also seem to go downhill inbetween the relapses too which is starting to scare me.

Basically my neuro thinks I have had MS for the past 12 years but it only kicked off properly last January. Since then I have got quite a build up of lasting disability, cognitive function is really bad and lots of bowel and bladder problems. The fatigue is constant but has been for years and now I am having alot of pain (alongside all the usual burnings, pins and needles, crawlings etc)

Sorry for the ramble and thanks again x

PS. I just remembered I never PM’d you back about the DLA. You got anywhere yet?

Thanks Mike. What do you think you will go for if offered?

No problem :slight_smile: Still waiting on the DLA… long! lol

Also I think it depends how long youve been on rebif cause doesnt it take a few months to kick in??

Maybe a chat with your MS nurse would be in order, cause defintitely sounds like your MS is active… guess theres nothing to lose by asking :slight_smile:

x

I will see what happens over the next month. Seeing neuro on the 18th July.

Have the copy of my DLA forms here. Will PM you now

Awesome cheers :slight_smile:

Hi babylove If the JC test. Ones back clear I thinks try tisabri if not I think compaxone with mithoxone(thinks hat how you spell it). But I am struggling with my head as I was DX in 12 days, I think I eed a bit more time. Mike

Morning

I too was on REBIF - for 2 and a half years, I went onto Tysabri because I continued to have relapses but as I couldnt tolerate the side effects of the drug my neuro suggested I could have Copoxone or go for Tysabri. I went for Tysabri as I believe it to be the most agressive treatment. I had the JC test on the 3rd infusion and that was positive - but it didnt make me want to stop Tysabri. I have now had 5 infusions - although I dont feel any benefit (apart from not having the side effects from REBIF) I am certainly stable. Some people on Tysabri swear that it has made them better rather than keep then steady which is fantastic!

Good Luck

Hxx

Hi

I have been on tyesabri for 2 years now - and in that time I have had 2 very minor relapses. Thats a change from one every 3/4 months. Also feel tons better and mobility is better too.

I know that everyone is different and not all treatments work for everyone, but this really has worked for me. Plus you get to see the hospital once a month which is great for updates, talking to nurses about any problems…

best of luck

Helen

Hi

I have been on tyesabri for 2 years now - and in that time I have had 2 very minor relapses. Thats a change from one every 3/4 months. Also feel tons better and mobility is better too.

I know that everyone is different and not all treatments work for everyone, but this really has worked for me. Plus you get to see the hospital once a month which is great for updates, talking to nurses about any problems…

best of luck

Helen

Hi Baby love, I have jus had neuro letter from visi last fri. He suggested rapidly evolving severe relapsing remitting ms with profound brain stem involvement. So I honk now I am gonna have tsabri irrespective of JC test result Mike

Hi Baby love, I have jus had neuro letter from visi last fri. He suggested rapidly evolving severe relapsing remitting ms with profound brain stem involvement. So I honk now I am gonna have tsabri irrespective of JC test result Mike

Sorry I don’t honk I am not a goose, that predictive text meant to say think, but honks ok

Thanks for your replies.

Can I ask you all how often you were having relapses?

And what disability you had?

no probs This is my 2nd relapse in 5 months. This has been going on since April, and got worse. I went to ospital walkin, but tripping, I came out with 2 crutches and I still trip/fall. I have bruises like other people have tattoos. I am Dizzy Forgetful Bad cognitive issues Fall Constant headache ore head an base of skull Foot drop Gait problems Take you pick. Apat from this I m not poorly, my BP,temp,plse,bloods ok,height and weight ok. I have decided irrespective of JC test I will have tysabri Mike

Since problems began in Aug 2011 till now… so 10 months 5 or 6 relapses with no recovery in between

Meaning ive been numb and fuzzy from my feet to my belly and in my hands every day since somewhere last August. My balance has been bad since November and my walking has been terrrible since then too.

Steroids made my walking improve slightly but went back to bad 2 weeks later.

Hi

I’ll be on Tysabri 4 years in August I’ve been relapse free since I started.

I was diagnosed in October 2006 but from then till I started Tysabri I was relapsing every 4 or 5 weeks I was even on Avonex but that do nothing for me I just got worse with every relapse till it got to the point I was in a wheelchair with just the use of upper left side fatigue was a nightmare and I lost control of my bladder and bowels.

But now the only thing thats wrong is I have to self catheterize and right leg is a bit weak but if thats all I have to bother me I’ll be more then happy.

That didn’t happen over night yes small things happen early on like being able to click your fingers and botton a shirt and tie your laces but it was around 7 or 8 months before thing really took off I was able to walk without any aids it was about 2 years before the fatigue went away I think that was because I felt able to join a gym and work out still do and I feel healthier, stronger and fitter than I’ve ever felt.

The test for the JC virus wasn’t available when I started Tysabri it didn’t matter I would have tried anything no matter what the risks when it did become available I didn’t want it my neuro would always ask me to have it done I kept telling him it wasn’t going change how I feel about Tysabri even if its positive I’m not coming of Tysabri I gave in to have it done about 3 months ago but I don’t know the results I never asked for them lol

Mark,

Thanks Mark. I had actally read some of your posts on other tysabri posts when I was searching for answers.

It really seems to have worked wonders for you and I would say if I am ever offered it I would give it a go. I know I need to ty the rebif for a good while longer to see if it starts to work but sometimes I feel like I just want the “big guns” before I get too bad.

Mike, it sounds to me like your making the best decision and I hope it helps you.

mrsp83, have you started it yet? I think I remember your post about getting offered it but dont know what stage your at yet. Hope it helps you too x