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I've officially "failed" on Tysabri - hoping to have Cladribine now

This is one for people who read the Barts MS Blogspot really. My (good) neurologist has referred me to a doctor who gives Cladribine to people with MS who have failed on the best licenced drugs. I didn’t know that doctors are not to prescribe unlicenced drugs if there is a licenced alternative.

I have been on Tysabri for four years. When I started on it, I could drive to the hospital, use one stick to help me walk the endless corridors to get to where I would have my infusion, drive home again and cook tea in the evening. Now I have to be driven to the hospital, use a scooter to get to the ward and then really struggle to even get into a car after the infusion. I don’t have enough strength in my arms and hands to prepare food any more. Has Tysabri made any difference to the course of my disease? I have no way of knowing. I really hope that I’m seen as a suitable candidate for Cladribine. I wish I’d asked for it before.

Good luck recovering & restoring to a recent state of health.

Like yourself, I was able & now not so. Taking away ones ability to drive & be self sufficient gives a reason to offer more medications. Now the offer of services takes hold & endless treatments.

Refusing has caused referral to a shrink, after a failed suicide. It’s a slippy slope, I’m trying to get off. After being sent to counselling with drug addicts & alcoholics. It’s like a merry go round.

Get outside in the fresh air & eat healthy is my advice.

All my best wishes for the new year.

I failed on Tysabri too. For different reasons, mine was that the LFTs went sky high. So now I can’t take a drug that is metabolised by the liver!

I just looked up Cladribine, my problem with that would be that it reduces your white blood cell count, so I couldn’t have that either - it’s the reason I’ve failed on Tecfidera!!

I really hope you get the Cladribine, it looks like a good one, reduces relapses by 55ish%.

Its a misery when you are told you’ve officially ‘failed’ on a drug. Even when you already know your mobility has been going down & down while you’ve been on it. And it makes you feel like poo, when you see other people walking in (feels like they’re skipping in while you’re crawling) and when you started so could you.

Maybe with the next drug that will be you!!

Sue x

I have seen people having Tysabri where you couldn’t tell that they had anything wrong with them at all. I’ve also seen people taking Tysabri who are in a very bad state - using walkers to get to the treatment room or in electric wheelchairs. My doctor only labelled me as having failed on Tysabri when I asked to be taken off it and started on an unlicenced drug. I wish he had taken me off it and put me on something different a couple of years ago. But if he had, I could be in a worse state now.

We have to live our lives facing forward, not wondering “what if I’d done something different?”. You can tell I’m struggling to do this, right at the moment.

This is so true. If a decision (to take - or stay on - one medication rather than another, for instance) is a reasonable decision given what is known at the time, then it remains a reasonable decision even if things don’t turn out so well. There is no point in reviewing that decision post-hoc through the retrospectescope and berating oneself for not having done something different.

Good luck with your efforts to persuade your heart what your head already knows!

Alison

I am sorry to hear that Tysabri didnt seem to work for you. I have been on it for 5 years. I have been really bad following relapses but these have stopped which is what Tysabri should do. If you are clearly getting worse, I think you are right to explore other treatments. I really hope Cladribine helps. It is a new one to me but fingers crossed for you, and all in 2016. Peter

I am sorry to hear that Tysabri didnt seem to work for you. I have been on it for 5 years. I have been really bad following relapses but these have stopped which is what Tysabri should do. If you are clearly getting worse, I think you are right to explore other treatments. I really hope Cladribine helps. It is a new one to me but fingers crossed for you, and all in 2016. Peter

Lucky, lucky you having a neurologist who will prescribe Cladribine for you!

I was one of the early people to have the drug while Merck still had it on the market years ago here in Australia. I had the first course of it before they pulled it from the market so I never got to finish the full treatment but even with only getting half the course I still had the most stable 18 months I had ever had. Makes me wonder how my MS would have gone had I got the follow up course of treatment! Brilliant drug. Best I have ever had. Yes, I got mildly lymphopenic on it but not as badly as I have on Gilenya.

I really hope you are assessed as being suitable for it. And I seriously hope Merck manage to get it back on the market. Bart’s Blog is quite right to be lobbying for its return. It really is a wonder drug. I can’t find any neuro’s here who will prescribe it in its subcutaneous form off licence for MS now that it has been taken off the list.

I also sympathise with the deterioration in your symptoms. I am about the same as you and am waiting to get my electric wheelchair now as I am so immobile. Been a right bugger not responding to treatment. I really hope Cladribine does the trick for you and slows things down. All the best,

Brog x

My neuro won’t prescribe it for me - he has referred me to a london-based neuro who will. PM me if you want to know his name.

Won’t be of any help to me as I’m in Australia but thanks anyway. :slight_smile: All the very best with it and I’m keeping everything crossed for you xx

It’s the wrong way round - isn’t it? - you haven’t failed on Tysabri: Tysabri has failed on you!

Rotten news either way round, of course. I hope Cladibrine is an option for you and that it makes the difference that Tysabri failed to make.

Alison

Thanks Alison. Also many thanks to Brog64 - really nice to hear from someone who’s tried Cladribine.

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Hiya.

I really hope you find something that slows this thing down.

I was more or less in the same boat as you last year. I tried Copaxone and Rebif and while I was on these the disease progressed. Not only evident by physical symptoms but confirmed by MRIs. Although, I know others on Copaxone and Rebif have shown marked improvements to their relapses.

I wish you all the luck in the world and that you are given Cladribine to start soon.

Take care F.

Shazzie xx

I heard yesterday that I have to be on Gilenya for six months before I can try Cladribine, because my PML risk is high. I’m struggling to get someone to give me the first dose of Gilenya, so it’s all going to take ages. That’s life, I guess.