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ASCEND - tysabri

Hello,

I’m on the ASCEND trial, testing tysabri for SPMS. I’ve been doing the trial for just over a year and I was sure that I was on placebo. About 3 moths ago I suddenly seem to have a lot more energy. Yup I do still get fatigued but just seem to be able to do so much more plus balance seems better, I’m hardly falling over, it used to be very frequently

  1. Is anyone else out there on the ASCEND trial - how is it going?

  2. How does Tysabri affect people with RRMS?

Going anonymous cos I want to remain independent and a doctor who is assessing me might read this.

I am posting this Anon because my head is currently all over the place. I have a very big decision to make regarding Tysibri and I need to do this in the next couple of weeks.

I have RRMS and I have been on Tysibri for the last few months. I am just coming up to my first review with my neuro and I think that I am one of the people that it does not work for.

Positive side is that I haven’t had a major flare.

Negative side is that I have been gently sliding downhill since I started and there is a chance that I am going towards a progressive form of MS.

I have been experiencing almost constant fatigue when before I only had it occasionally or if I had an infection.

My balance is completely shot.

My foot drop has got worse.

My left side is considerably weaker than it was.

Speech worse.

Dexterity almost non existent.

The MS nurse and the junior and senior neoro registrars I have seen through the last few months are VERY concerned and I have had my appointment with the consultant neuro bumped forward by 2 months.

I went into Tysibri with both eyes fully open about what it could and could not do. The team keep telling me how impressed they are with my research and knowledge of the treatment. I wasn’t expecting miracles but it now obviously looks like I am one of the people that it doesn’t help. I am devastated and crying all the time because it seems so unfair.

Sorry about the misery post but this is the only place I can vent. No matter how many times that I explained it to them, Family and friends were obviously looking at this as a cure and they can’t seem to cope with the fact that I seem to be getting worse.

Not sure why the 2 posts are joined together. The second post is definitely one for your neurologist but I continued to go downhill several months after my first infusion. So you have some context, my first infusion was 10/10 and I ended up in hospital 7/11, and had my last relapse 8/11. Since then I have stabilised. I had extremely active MS and it clearly took a while for the juice to work. Hope it works out ok for you. Peter

Hi,

I sort of understand why you feel so miserable, it is horrible seeing your body being eaten away in the way that you describe and its obciously in a short time frame…

As I’m sure you know Tysabri is not a cure, hopefully it slows down the rate of progress. Try to imagine where you mght be without it. There are other drugs that could help you but I’m no medic. All I can say is this, could you have moved from RRMS on to SPMS?

Sorry that I cannot offer more help and sympathy

I wasn’t trying to hijack the initial post. I just responded to his/her enquiry about how Tysibri affects people with RRMS.

Thanks for the kind comments everyone and best of best wishes and love to everyone on Tysibri or any other medication.

I have been on Tysabri for two years. I’m still deteriorating, I think a bit slower than I was before but it is really hard to know - because of course I don’t know how I would have been without the drug. For the anonymous person who started this thread - you ought to ask your neuro if there is a danger of ‘rebound relapses’ if you stop Tysabri. I know this is a general problem with stopping this drug - would it be different for you because the drug does not seem to be working for you?

Sending you masses of sympathy - I know how hard it is to see your ability to live a normal life going down the plughole…

Hello Sewingchick,

I’m on a double-blinded random trial. No idea if I’m on a placebo or not and will not know for at least 18 months after I finish my stint on the trial. I have an option to go on Tysabri immediately after I finish the trial and paid for by Pharma. I’m JCL +ve so talk about limbo-land.

I do think it is a no-brainer, you have got to go-for-it. I will talk to people as I near the end of the rial but its not an easy decision. Detecting and chances of getting to PML do seem to be changing.

I didn’t know that - becoming less likely that you get it I hope? I saw my neuro today, the one that put me on Tysabri. He always says it’s the best drug there is for slowing down relapse rate and progression. He’s about to start me on something else which may slow progression (and which I can take alongside Tysabri) but I didn’t get the name. It’s a drug for some other degenerative condition and he’s going to write to my GP about it. I shall post on here when he does.

I am on Tysabri and had a blood test for the JC virus a couple of months ago which came back positive. I didn’t want it done but had no choice. It was done in Denmark, they are now able to give a reading in future based on something called titres, so will get to know how positive we are!. I will have to wait a while to be re-tested. Just thought I’d mention it as I like people to know as much as the Neurologist. Peter

I’ve been on tysabri for 10 months, it was my first treatment straight after diagnosis. It’s been a slow process but I feel so much better, apart from the occasional bout of fatigue and a few tingles I’m nearly back to the old me. I realise it’s different for everyone though so I wish you all the best.

Hello HB,

I was diagnosed 17 years ago and I definitely have SPMS. Been on the trial since last September and suddenly realised that I now have more energy and a greater zest for life. Its far too late for me to ever get back to the real old me The idea that the progress of MS could possibly have slowed down, stopped and even gone into reverse is fantastic

I’ll keep my fingers crossed

From what I understand they are moving towards giving people a cocktail of drugs to reduce/stop MS. People with aids take a cocktail and they do seem to have managed that problem quite effectively.

Definitely a lot of research going on in the world of MS