I’m glad its going well. I’ve followed Barts for along time so have followed their posts on it. I didn’t think it was as effective as HSCT though. I was under the impression its slightly less effective than Lemtrada but without the worry of many of the associated risks. Would you mind pointing me in the direction of where you read that? I’m genuinely interested as I plan to have HSCT if I fail Lemtrada.
I am fascinated by this. Why have you chosen HSCT over Cladribine? There is loads of evidence about what Cladribine does and, from what I can tell, hardly any evidence about what HSCT does.
Is it because there’s evidence about Cladribine, and you’d rather have something that could be even better (or a lot worse), you’d rather go for the bigger prize, even if you’re unlikely to get it? Is it because there is a crowd in favour of HSCT? Is it something to do with paying for HSCT (things you pay for are more highly valued than things you get for free)? Or is there some other reason?
Sorry to but in, in front of the reference to the evidence about Cladribine, but I did post that above.
I just thought of another reason that people are picking HSCT over Cladribine. There are lots of descriptions of personal experiences of HSCT - gazillions on Facebook, for example. There’s no equivalent fund of stories about Cladribine - maybe that’s why people favour HSCT? What do you think humbug?
For Helly - I realised I only answered half your question. Do I think that Cladribine might be a cure? For some people, maybe. In the sense that Cladribine seems to stop deterioration for something like half the people who have it, and some of these see improvement as well.
I think Cladribine (and Lemtrada) are both a lot cheaper than the drugs that you have to take for the rest of your life. And they’re more effective. Do the drug companies want to close down the huge market for Tecifidera, Tysabri, Gilenya etc etc? Probably not. I think Cladribine is a better drug than Lemtrada (same effectiveness, less side effects) and Cladribine may be too good for the drug companies to want it out there.
I’d like to try Cladribine too. I can’t claim much progression, but I’d like to feel more ‘normal’. I just sang Verdi Requiem in a semi-pro choir. We have to stand still for over 40 minutes. Now that I’m home, the exhaustion has set in. We sang it twice.
Extreme activity really drains my thigh muscles. I’m sure the Cladribine would help my extreme urinary urgency problem. I have less than 2 minutes to reach a toilet or that’s it for my clothing.
I have an MRI coming up sometime. If there’s activity, then I shall plead for Cladribine.
Hi, that’s ok Sewingchick, it still sounds like a great drug. Tecfidera is ok but, Cladribine seems better. I wanted Lemtrada but my hubby & the neuro weren’t happy with that, Cladribine has less side effects. I really hope it works for you, you’ve been through a lot. If tecfidera fails for me I will ask for Cladribine, I will mention it anyway at my next hospital appt.
I think you have to be referred to the doctors at Barts to get it but I don’t understand why the other neuros aren’t prepared to give it out. They can read the research just as easily as we can.
If it is that good then why are more people not offered it ?
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Because it’s off label. Licenced for hairy cell leukaemia but not MS. There links above above about it’s efficacy for MS and the whole complicated mess about it not being offered.
That is exactly right. Just to add more detail, many neuros don’t know about it because it’s off-licence for MS. But you can get it by asking the doctors at Barts for it.
Which is why we need more brave souls like Sewingchick to ask for it and take it. And of course, to report on their experience of it.
Sue
Yes, thanks for the posts Sewingchick!
I just got my blood test results back. Very disappointing - my lymphocyte count is still in the normal range. At the lower end, it’s now 1.26 (normal range is 1 to 3) and I think it was 1.6 when I had my treatment. I guess I’ll be having another three sets of injections next week.
It’s so funny, when I get my blood test results, I’m disappointed that the lymphocytes haven’t gone up and you’re the exact opposite!
I am sorry to hear that the Cladribine isn’t doing its stuff yet though. Hopefully after the next series.
Sue
As I wait for my second treatment, I’ve been thinking about this. Would you mind telling me what your lymphocyte count is now? Have you had problems because it is low? Have you seen a reduction in relapses since your lymphocyte count went down? Has your neurologist been asking you these questions?
Hi, has the drug made you drowsy?
My lymphocyte count was 0.4 when I stopped the Tecfidera in November. Since then it’s hovered around 0.5-0.6 and back again. So far it’s not gone above 0.6. I haven’t had any relapses but then, I’ve not really been having many proper relapses for the last couple of years, more that sometimes existing symptoms are worse for a few weeks. I haven’t had any significant infections so there’s been no problems with living with low lymphocytes (one UTI but since I ISC, that’s always a possibility and it cleared up with just one course of antibiotics). I have had extra fatigue but then just now I also have raised LFTs due to a reaction to Betmiga so it’s difficult to isolate what might be due to low lymphocytes and what to liver function.
I’ve got an appointment with my neuro at the end of the month so I’ll be asking him all the various questions.
It does seem a little unfair, we could happily swap lymphocyte counts.
Sue
But that’s a bit weird, isn’t it? I think the doctors were fine with me have a count of 0.6 when I was on Gilenya. I don’t know where they want my count to be now, but I know 1.2 is higher than they want. I’ve asked my neurologist what he’s targeting but haven’t got a reply yet.
It does seem totally weird. I think because there were possibly some links to PML with low lymphocytes and Tecfidera they’re extra careful.
My lymphocyte count actually seems to be on the low side normally anyway. Apparently my baseline before Tecfidera was only 1.3.
The problem for me (and I suspect for you) is that we are learning isolated facts but ultimately don’t have the knowledge to be able to properly tie things together.
One thing that has utterly mystified me is that my GP one day said to me that low lymphocytes isn’t a major problem when it comes to infections, low neutrophils is! So now when I check my results at every blood test I ask for: total white blood cell count, lymphocytes, neutrophils, ALT and AST (liver function).
Strangely, the receptionist at my GPs said last time, how odd: they are all the things that are outside of the normal range!!! Think they expect us all to be utterly ignorant of our medical condition(s). And all we are trying to do is understand, and educate ourselves bit by bit so we can get the best from our treatments.
Sue
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Just a quick note on Cladribine. I think I am already seeing improvements in my bladder control and my walking. This is making a bigger difference to my life than most people could imagine (particularly the bladder control improvement). It’s still very early days for me however, and this post is mainly to share a video about Cladribine and a post from the MS Blogspot.
Here’s the video:
and here’s a link to the information on the Blogspot:
http://multiple-sclerosis-research.blogspot.com/2016/06/cladribine4ms-effective-disease.html
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