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My cladribine experience

For anyone who hasn’t read my previous posts on this, cladribine is a possible cure for MS. It’s presently only licensed as a drug for cancer but the doctors at Barts will give it to people with MS (if you ask nicely).

My cladribine experience so far has been very straightforward and easy to deal with. I was already in the outpatient room, on the bed, having just had a lumbar puncture (more about that below). The doctor had checked my lymphocyte count which was in the required range. I rolled up my top and had two 5ml injections of cladribine into my stomach. This hurt a bit, the way injections do and the injection sites were a bit sore for an hour or something afterwards. But the experience was pretty much a big nothing.

When I arrived on the ward to get my injections, a couple of hours before, I was told there might be a problem. They had looked at my blood test results and my lymphocyte count was really low. I was a bit confused. I had only just stopped taking Gilenya when I last had blood taken and Gilenya makes your lymphocyte count low, that’s the point of it. I explained and was told that I should have had a blood test in the last few days (but no-one had told me). The MS nurse agreed to take blood straight away and rush it to the lab so they could test it while I had my lumbar puncture.

I had the lumbar puncture (I’d chosen to, to help with research), which didn’t hurt at all (apart from the anaesthetic injection before the doctor started on the LP itself). Afterwards I felt OK, while still lying on the bed and was very relieved to hear that my lymphocyte count was normal and that I was going to get the cladribine. On getting up after the cladribine, I felt very dodgy (technical term) indeed. Whether that was an effect of the cladribine or the lumbar puncture, I shan’t know until I have my second and third injection, over the next two days…

So message is, cladribine is easy to have but make sure they’ve informed you of all the tests you need beforehand.

Hi.

I checked everywhere and this drug is not available for people with MS in the UK or EU.

Keep smyelin

Kielyn

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Not quite everywhere methinks.

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So pleased all went well keep us updated xx

OMG, it was just a dream! Or, no, I just made this story up. Actually, I described exactly what happened to me and your research was of a very poor standard. I’d stick to the day job if I was you.

Well done Sewingchick.

So happy you’ve finally got there.

Let us know the progress.

Sue

Thanks for that interesting update. I am very glad that it has gone well.

Alison

Day two of my cladribine. I got a phone call from the Royal London to say the made up cladribine had arrived from Barts. I had a short taxi ride to the hospital, where I had the two injections in my stomach. I was still in a bit of pain from the lumbar puncture the day before and a bit under par because of that, but I felt exactly the same after the injection as before. Again, really nothing to report, apart from saying that the injections hurt less than the two previous ones.

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Please, for your own sake, reads the Barts blog. Cladribine is making the Profs there, very hopeful. At least we, who have MS are able to try it and not just mice.

Sewingchick has had a rough and stressful time with treatments. I’m glad she’s got hope again. I’m being very polite here. Very.

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Hi,

Good luck luck this treatment was reading about it sounds promising. Take care /

Kielyn x

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Day three of my cladribine. When I got up, I realised the lumbar puncture wound had stopped hurting, which made my day better to start with. I went straight to the hospital, getting there about 10. I rang the ward to tell them I was in the hospital and they told me the cladribine had arrived. A lovely student nurse, who was doing observation on the ward, came down to push my wheelchair to the lift for the ward. I had two more injections of cladribine in my stomach and felt absolutely fine afterwards.

The nurse (angel in comfy shoes) who had given me all the injections explained a few things. Cladribine decreases your lymphocyte count but to try and avoid it going down too far, they start off giving you a lowish dose. I will have to have a blood test in four weeks to check my lymphocyte count. Depending on where the count is, I will have zero, one, two or three more days of cladribine injections, a few days after the blood test. The nurse also gave me some anti-viral tablets and told me to take two a day for the next month and a half.

I was a bit disappointed to hear that the treatment doesn’t take effect straight away and probably won’t be fully effective in a month. But I can live with it. I’m feeling OK now I’m at home again. I just did fifteen minutes of standing against a wall, with my legs completely straight, the latest exercise from my physio to strengthen my thigh muscles. I’ve been struggling with this but I was better on it today, which I’m happy about.

Just in case anyone’s reading this who is interested in how I got to here, I’ll describe (anyone who’s followed my tortuous journey on this can stop reading here).

I was diagnosed with MS in 1999, having had some fairly minor balance problems for years. My husband was keen that I was always on the books of a neurologist and we moved about a bit so l had experience of lots, pretty uniformly unhelpful. My walking and balance continued to deteriorate slowly but I didn’t really have anything you could call a relapse. Around 2007, I was offered beta interferon by my local neurologist but I turned it down because I wasn’t having relapses and the understanding at the time was that it reduced the number of relapses a person has, but doesn’t do anything for general deterioration (the doctors think differently now). In 2011 I got a second opinion about my MS from a neurologist at the National in London, after asking my GP if I could see a better doctor. This neuro told me to go onto Tysabri. By this time I needed one stick to walk and I was having a lot of problems with bladder control (frequency and urgency). A couple of years later I added 80mg of Simvastatin, to try and slow the progression of the disease.

By the end of 2015, I could only walk very short distances with two sticks, very slowly. My bladder control had improved a lot, but I was properly disabled in other ways, unable to cook and having to use a wheelchair outside. I’d been thinking of trying cladribine, after reading about it on the Barts MS Blogspot. My PML risk went up and I came off Tysabri and went on Gilenya. I then got a referral from the neuro at the National to one of the doctors at Barts. He was keen that I go on cladribine, so was I and here I am.

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Hi SC

It’s brilliant that you’re keeping us updated with your journey. I’ll be keeping my fingers X’d that your lymphocytes are OK and that you can go on to the full dose.

As you know, I’m in a fairly similar position to you, I was diagnosed in 2002, but had first been tested for MS in 1997 (& was told I didn’t have it but there you go!). I’ve been on Avonex, Copaxone, Tysabri and Tecfidera and have had bad side effects from most of these apart from Copaxone which just stopped working. My physical condition is pretty poor and I’m basically now stuck with symptomatic drugs rather than DMDs.

I’d have been happy to give Cladribine a go but low lymphocytes is what caused me to come off Tecfidera, so that’s a no go.

And I don’t think I’d dare, nor be offered any of the other high risk DMDs given my history of side effects.

So I’m always very happy to vicariously share your journey. Thanks for sharing it.

Sue

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I’m fine - back to normal. Walking pretty bad, bladder control absolutely fine, muscle control in my legs a bit better. Thanks for asking.

Hope it all goes really well for you F. I’ll look forward to hearing all about how you get on.

Be thinking of you.

Shazzie xxx

I am doing fine, a week and a half after my treatment. My walking is a little better and, according to the physio that I see regularly, my thigh muscles are a little less stiff. Nothing really stunning and the purpose of this post is really to give anyone who is interested a link to information about Cladribine that I found very persuasive, when I was making my decision about taking this drug. If you read the information, you will find other links to scientific papers which show why this could be a very exciting drug for lots of people with MS (progressive as well as relapsing).

Sewingchick - We do appreciate you letting us follow your ‘journey’ - lts early days - so fingers crossed for any positive development.

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But it is a bit weird that people are so interested in paying for HSCT when they could have Cladribine, for free, now, in this country. And the information I have read suggests Cladribine is as effective as A-HSCT and much less risky than NM-HSCT. Doesn’t have its own Facebook group I suppose.

Hi, just had to message you to say THANKS for letting us now how this is going for you. I got really excited reading it & hope it works for you!! I am on Tecfidera but, this sounds much better & cheaper for the nhs. Do they really think it could be a cure? Also does it help to or replace the myelin on our brains ( my hubby doubts I have one)? I have read the barts blog its a bit complicated but it seems this really is a wonder drug & why oh why are we not all offered it? Is it all about the drug companies making money…I hope not!!! I wish you good luck & best wishes for journey. X

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No replacement of myelin on offer with this, I’m sad to say. Just the hope that your immune system is going to stop attacking your myelin.

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I see my MS Nurse in a few weeks time. I have already printed off the relevant Barts Blog, ready to support my interest.

Sewingchick, please do let us know how it goes, for you.

Geoff