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Tysabri. Bad news for me.

I have been on Tysabri for the last 18 months. It has worked for me although not as well at it seems to have done for others. I have had (relatively) minor relapses - but nothing as catastrophic as before - but my mobility has deteriorated VERY badly (was using 1 walking stick when I started, then a single crutch, then needed 2 crutches for an increasing part of the time and now wheelchair for some of the time.) and my cognition is ****.

Unfortunately there is now a strong suggestion (yet to be confirmed) that I am now “slipping” into SPMS and I am waiting for an apointment with my neurologist to get the full SP (she is the only one with the cojones to tell it like it is and I have been treading water (*) as she has been on maternity leave and is only just back.)

However, at my last Tysabri infusion, my MS nurse came up to see me on the ward with no warning - which was very odd - and dropped the bombshell that my latest blood test had come back JCV+ - so it looks like I am now b******d both ways

I know that some people are happy to carry on with Tysabri when JCV+ but my review of the stats for continuing on it after 2 years (which I am coming up to) would make it far to big a risk for me to take.

I am not making a final decision until I have discussed it with my neuorologist but the staitstics are too risky for me.

My next scheduled infusion is on Friday and I will be having an “urgent” MRI scan the same day (arranged 4 weeks ago) on the same day. I should have a date for the neuro very soon.

I like to go into these appointments as well briefed as possible, so, what I am asking you guys is:

  1. I there any VIABLE alternative to Tysabri if I am JCV+ or, as it is the “Big Gun” of treatments, is any alternative treatment just a pointless backwards step?

  2. If I am found to be SPMS, is there any treatment at all? (I think that they have been trialling Tysabri for SPMS as well but … )

  3. If I stop Tysabri (andf I am still RRMS) what is the likely result? Catastrophic relapse after castatrophic relapse?

The good news is that, after having happy a complete breakdown at the infusion before last, I finally seem to be getting a bit of attention for my worries and the Pregabalin that I have finally been prescribed seems to be helping. (I don’t feel like I am standing on a “powerplate” excercise machine all the time quite as much as I did)

Boblatina (who was thinking of going anon but can’t be bothered to hide)

(* if only I could, actually, TREAD water!)

Hey

Pfft!!! DON’T even worry about the PML risk. My thoughts FFS why worry about it. Look at tis way, you have 99% chance of NOT getting PML! The quality of life that this drug has given me is amazing. I have studied, out to see me bro Down Under and I play w/c bball. None of this would have been possible BUT for Tysabri. I was on Betaferon and Rebif respectively, whilst they reduced relapse severity they didn’t reduce the rate. I had 11 relapses in 3 years, since Tysabri, nada. I have been on TYsabri for over 5 years.

I am JCV+ and refused to have the test until I was bullied into it by the MS infusion nurses, after 18 months it came back positive. I am now refusing to have the blood test now I know that I am + as they are keep a close eye on people who are JCV+ and will move swiftly if a problem should occur. I used to have my infusions at Kings in London and I met a consultant anaesthetist having his first infusion, he attends the same clininc as me and he is the only who has refused to have the test done, as I did originally! I really don’t give two hoots about the risk that so many worry about.

IF you are on the cusp of SPMS then they may well keep you on it as I know MS’ers who are SPMS but still have aggressive relapses over it and these can treated with Tysabri as well. As for coming off Tysabri I know that there can be risk of a relapse so what they can do is put you onto an injectable DMD or Gilenya to reduce the effects of the relapse. You could still be RRMS and the symptoms may have just worsened. IF this is the case then Tysabri may not be working for you. If so Campath (Alemtuzumab or Lemtrada) has been licenced by NICE and might work for you all though there are associated risks with this treatment too.

Andy

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I am very sorry that you are in such a fix. There are an awful lot of issues there, and they’re none of them easy ones to untangle. You have the questions clear in your mind: I hope that you have a productive consultation and that the neurologist can give you some useful answers and a clear view of how he/she weighs up the risks and benefits of your options. I hope that you can get a plan in place for future treatment that you feel comfortable with and have confidence in and that you can soon put some of these very difficult dilemmas behind you.

Good luck.

Alison

How horrid for you. I cannot help you with the treatment for SPMS - I know the same as you, that they are trialling Tysabri on SPMSers.

Its easier said than done to not worry about the PML risk…I have just come off Tysabri due to my titre levels for PML being off the scale and I am starting fingolimod a week today. My neuro has explained to me that Tysabri is without doubt the best available treatment for MS (RRMS) and that fingolimod is somewhere between your rebifs, copoxine etc and Tysabri. It was explained to me that when you come off Tysabri the risk of relapse is quite high but touch wood I have been OK, I have had to have a 2 month wash-out period between ty and fingo. I am unsure if you can have fingolimod for SPMS.

For my personally I accept that fingolimod is not as affective as Tysabri, and I did absolutely great on Ty. But, PML is not something I want to mess with and I made the personal decision that I would rather live with what MS can give me than what PML can give me. My neuro was careful to give me all the facts but not to sway my decision. Although when I told him I would stop he told me he was relieved and he would of made the same decision had it been him.

I am glad to read you are getting more attention to your worries now. Good luck with your appt with your neuro.

Hxx

Thanks for the information guys - lots of food for thought there.

Any more suggestions?

There is plenty of useful information on the Barts & London blog, if you pop tysabri rebound into the search.

http://multiple-sclerosis-research.blogspot.co.uk/2014/02/clinic-speak-switching-from-natalizumab.html

Gilenya would be the alternative to tysabri if you dont want to take the risk. Have you discussed the new oral drug Tecfidera? I am on this myself but i’m not sure how it compares to Gilenya in effectiveness as it’s so new. (tecfidera reduces relapse rate by 50% with low risks and minimal side effects)

Lemtrada (formally known as campath) is now licenced. I don’t know how soon it is available but i personally would be asking about this as well. This is the ‘top of the tree drug’ and very expensive. Its a ‘big gun’ alongside tysabri.

The side effects and risks obviously increase from the interferons up to the ‘big guns’

I hope you get plenty of advice so you can make your decision. Its a case of weighing up the benefits against the risks of each drug.

Not an easy decision to make but make sure you know all there is to know before you make your choice.

Good luck and best wishes

Teresa.x

I’ve seen a few posts on here where people are JCV+ but still taking Tysabri. They think the benefits far out weigh the 1% risk of getting PML.

How about the other " big gun" Lemtrada? I had it in 2009 and 2010 and not had a relapse since. The only downside I’ve now got an over active thyroid.

Heather

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