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Sewing-chick

My Cladribine experience

I wanted to describe my experience of being given Cladribine. This is a treatment that may stop MS activity. It is given on three separate occasions. The first time the person with MS has three sets of injections of Cladribine. A month later their lymphocyte count is checked and, depending on what it is, they get zero, one, two or more sets of injections. They then have another course of injections a year later. I had agreed with one of the doctors at Barts that I wanted to try Cladribine, had blood tests which showed normality and then it went like this. Day 1: The nurse at the Royal London hospital gave me two 5ml injections of Cladribine in my stomach. The injections hurt a bit and I did feel ropey afterwards, but I'm pretty sure that was from the lumber puncture I had just before the Cladribine. I left the hospital - no overnight stay necessary (or possible) for Cladribine. Day 2: The nurse at the Royal London gave me two 5ml injections of Cladribine in my stomach. The injections hurt less than the day before and I felt pretty normal afterwards. The nurse gave me anti-viral tablets to take for eight weeks, because the Cladribine reduces the body's ability to fight off viruses. I left the hospital. Day 3: You can probably guess what happened - the nurse at the Royal London gave me two 5ml injections of Cladribine in my stomach. By this time I was completely used to it and felt normal before and afterwards. I left the hospital and went home. To give you a bit of background - I am 51 and was diagnosed with MS seventeen years ago. For the first eight years after diagnosis, I saw fairly slow deterioration in my walking but nothing you could really say was a relapse or a remission. About nine years ago, my walking started to deteriorate faster. A couple of years after this I started to have lots of problems with my bladder (frequency, urgency and retention). These continued for about five or six years - I was self-catheterising three or four times a day and still wearing pads and having accidents. About two and a half years ago, my bladder control started to improve and now it's pretty good. I go three or four hours between visits to the loo and don't have to get up to go in the night, but I still have a bit of urgency sometimes. I still take Regurin every day and I take Clonazepam before bed to get rid of leg spasms while I sleep. This time last year I had trigeminal neuralgia (shocking facial pain) for about six weeks, which cleared up completely after that. I've never been told whether I have progressive or relapsing-remitting MS. It seems to me that my disease doesn't fit comfortably into any category. How am I now, two and a half weeks after my first dose of Cladribine? Well, not massively different. I thought my walking was somewhat better (still fits into the 'just terrible' category) but not having such a good day today, after waking very early with my leg twitching. My bladder control is the same as before and I'm going on the cross-trainer for 27 minutes most days. I shall try to keep this updated as I go on with the treatment.

cherish

@cherish

Good morning to you @sewing-chick Very interesting ? I'd certainly take Cladribine if offered. I'd even travel to London to get it. How are you? Hopefully wellish? Lisa xx

tessa

@tessa

Good morning indeed @sewing-chick Thank you for that interesting post. I don't fit into any categories of ms either. I was diagnosed in 1965 aged 16 I have had an interesting ( I think) history. Total and sudden paralysis for five months at 16 . Slow complete recovery over next five months .Then absolutely no symptoms at all .....zilch ....no medics no treatment no relapses .nothing at all.....forgot about it ...until the last few years when I am told I now have spms! So apparently no treatment available when I need it other than self funding Fampyra. I have not yet decided whether to try the free introductory offer! Concerned about funding issues if it works! Keep us posted about your progress Tessa xx

Sewing-chick

@Sewing-chick

For @cherish - if you are really interested in this, you should ask your GP to refer you to Dr Schmierer at Barts for a second(?) opinion on your MS. As for how I am - much the same really. I am hoping for something better but know that I may never see this. Hi @tessa - I think they give Cladribine to people with SPMS (but not certain about this). Just one suggestion, I would think very hard before you go on Fampyra. I took it for two years, and my walking deteriorated faster in those two years than before or since. All that money, and now I think it may have been making me worse. It was really hard to stop taking it because every time I tried, I would go downhill a lot. Back on it, my walking got a bit better again (but worse than it had been two months before, say). In the end, the Fampyra started to disturb my sleep and I had to come off it - now I wish I had never taken it.

tessa

@tessa

That experience of Fampyra is really interesting....thank you. I feel that sometimes we only touch the tip of the iceberg over getting the individual pros and cons of experience. Tessa

Rhymenocerous

@Rhymenocerous

Hi @sewingchick, thanks for this post, good eye-opener as not many people are given Cladribine so it's very hard to know what the reality of taking the treatment is. I'm wondering why you weren't given lemtrada or Tysabri, even if they think you are progressive, as these drugs also seem to work on progression? - perhaps Cladribine has much more convincing evidence for working on the progressive side? Whatever the reason I'd rate your neuro's reasoning, St Barts team are ace, just out of curiosity as this is golden knowledge :D

Sewing-chick

@Sewing-chick

I was on Tysabri for four years. I was very hopeful that it would do great things for me when I first started on it but I deteriorated a lot while I having it. I came off it when my PML risk got too high but I wish I'd come off it earlier. I had discussed going on Lemtrada with my neuro before I was taken off Tysabri and he was happy for me to do that. When I read the stuff about what happens while you're having Lemtrada and straight afterwards, I got scared. My walking was so poor, I couldn't imagine how I would manage if it got worse, even for a few weeks. I was also scared that my bladder control would get worse again and this would be a huge problem because it takes me so long to walk to the loo. I read about Cladribine and decided it was a better bet for me. That did mean I had to wait to see Dr Schmierer at Barts - he's not my regular neuro. So I made the decisions about my treatment, armed with knowledge from the Barts Blogspot. Reading the comments about the doctors' plan to close it down, I get the impression I'm not the only person who has done this.

Sewing-chick

@Sewing-chick

I meant that I made the decisions without much advice from the various neuros - because I felt the Tysabri hadn't helped me and I should have been taken off it sooner and because I felt I wasn't a good candidate for Lemtrada (but my regular neuro thought I was).

EdgarLeroy

@EdgarLeroy

I will be taking delivery of some cladribine tomorrow in sunny SoCal. Glad to hear it was well tolerated. It wasn't easy getting my neuro to prescribe it off-label. Good thing it's relatively inexpensive, because my insurance probably won't cover it. I like the high efficacy, low toxicity & brain penetration of cladribine. Barts blogspot & Drs. G & K are the best. Cladribine4MS

cherish

@cherish

Good morning to you @sewing-chick Thanks for the advice and sorry I never replied to you earlier. I havnt had any notifications or mail for over 3wks so it looks like I'm lugging ppl. Lol. Anyways, I have been reading up on Cladribine and il continue reading till it all registers in my head. I can read and understand it well, but the next day I forget a little. I wish Dmd info came out in music/lyrics/song, then I think I'd manage that much better! Hope you have a wellish day today. And thanks again Lisa xx

Sewing-chick

@Sewing-chick

Having a good day so far today, thank you @cherish - had a good few days in fact, walking and other leg stuff all a bit easier. So hoping it's an effect of the Cladribine but I know it might just be MS ups and downs. @edgarleroy - thank you so much for posting that you are trying Cladribine as well - I have felt alone in my experience so far. I did have one person saying they had done well having the first/second dose of Cladribine in Australia but then they never got the third lot.

cherish

@cherish

That's good @sewing-chick that you've had a couple of good days. I suppose this is the problem with ms, 'Is this just the ms behaving a little or is it the Dmd doing its job'.? Well I just hope you continue to have more good days ahead. Yeah @edgarleroy Be good to know how it goes for you. Good luck. Lisa xx

EdgarLeroy

@EdgarLeroy

Just took 2nd dose - easily tolerated. Took 1st one last night & went to work today. The case for using cladribine: http://multiple-sclerosis-research.blogspot.com/2015/10/suppose-there-is-therapy-for-ms-that-is.html You &/or your doctor can get protocol & advice from Dr.K at Barts.

Sewing-chick

@Sewing-chick

I am now four weeks past my first dose of Cladribine. This drug is meant to lower your lymphocyte count, because the lymphocytes are attacking your myelin. The doctors proceed cautiously, because lowering one's lymphocyte count too far is dangerous. The way the Cladribine is given is to have three lots of injections, then a blood test after four weeks, then one, two or three more sets of injections, depending on what your lymphocyte count is when you have the blood test. I just got back the results of my blood test and my lymphocyte count has gone down a bit but is still in the normal range. So I guess I'll be having three more sets of injections, next week. I wish the first lot had done the job, but never mind.

agnieszka-legierska

@agnieszka-legierska

thanks or posting about Cladribine sewing chick, i m due to start it shortly. Would you mind if i called you so we can talk about this further? as i have some concerns. Thank you.

Sewing-chick

@Sewing-chick

Sure. Do you mean on the phone? I haven't been on this site much but I presume there's a way for you to private message me and we can arrange to speak.

Stumbler

@Stumbler

@sewing-chick & @agnieszka-legierska , one of you needs to initiate a friend request that the other will need to accept. Then you will be able to Personal Message each other.

Sewing-chick

@Sewing-chick

Here is a bit of a sad update about my Cladribine experience. The good news first: my bladder control has improved to the point where I'm not wearing any pads. This is the first time for years that I've been able to do this. I'm going hours and hours between trips to the loo and not having to get there urgently when I do need to go - which is a good thing as you'll see below. I was at my worst (ever) last week. This week, I can generally walk upstairs at night for about six or seven steps without using my hands to lift my legs. Last week I couldn't do a single stair without using my hands. I am generally a bit better in the evening. However, my walking on the flat in the day is now terrible - worse than it has ever been (apart from when it was very hot). I'm struggling with picking both feet up, but finding it particularly hard to lift my right foot off the ground. I can no longer walk downstairs facing forwards, I have to go down backwards. My leg twitching at night is worse. I have gone up from 1 to 1.75 clonazepam tablets and this is only just keeping it under control. I think my hands are a bit weaker too - I feel as if I'm struggling more with cutting up my food, but I'm not certain. I shall do another update in a few months. It would be nice if I have something better to report but I'm not optimistic. Sorry to have been so gungho about Cladribine and for it to have turned out so badly. Not what I was expecting or hoping for.

TracyD

@TracyD

@sewing-chick These things take time, they're not a magic bullet that makes everything better, people need to hear all of the journey not just the good bits otherwise if they experience something it's scary because all they've ever heard is the good stuff. It's important to share all of it. I hope that the good times come back quickly xxx

tessa

@tessa

Hi @sewingchick. I totally agree with Tracy that it is important to share the ups and the downs of any treatment. We have a huge resource here on shiftms to exchange information. That has to be good and bad and I really appreciate that you have done just that. I am extremely interested in the outcomes of all the treatment that people are receiving. I wish that we had a better way of actually analysing and assessing it on this amazingly helpful site..at the moment it seems a bit disjointed and random,.. I also don't really think that any treatment can be satisfactorily assessed until many years after having it. That's just based on my experience....and open to debate! Good luck keep on hoping and keep on letting us know whatever... X

aabreu

@aabreu

@seeing-chick. Hi. I just read this today and find it very interesting. Can you give us an update? Hope you're improving. Andre