I’ve been reading up on Cladribine, because I am gong to see my neurologist about whether I can have it, in a short while. At Barts they seem to think it is better than the other MS drugs and (whisper who dares) the drug companies prefer the others because they can make more money out of them. That seems to be what the post below is saying anyway - maybe I’m reading it in a biased way because I want to try this drug…
Reading the Barts info really makes me wonder what on earth is going on with the NHS is this country. It looks like it’s a good drug, that is cheap, could be useful for all types in MS, is already licensed and for the sake of a phase 3 trial is not generally available for MS patients, even though it’s already available for one type of cancer.
If you can manage to get it off label Sewingchick then go for it. It would be really interesting to find out what effect it has.
In actual fact I think I might bring it up next time I see my neurologist. Given that I’ve run out of DMD options due to side effects and not really being a suitable candidate for the big guns like Lemtrada, it might be a good one for me. And he’s a forward thinking MS specialist. I wonder what he’d think??
Sadly not till June. But as I couldn’t have any new treatment (if there were such a thing I could take) until my lymphocytes recover, and they’re still only at 0.5, it may take till then for them to get to a healthy pre-Tecfidera level.
Tecfidera was available at less cost, under another name, to treat psoriasis, before it was withdrawn for a few months, rebranded and marked up in price for MS specific treatment.
I imagine a similar strategy might be applied to other ‘off label’ success stories.
Sue, don’t forget we talked about this before and, I think you said, low lymphocytes preclude Cladribine.
Also, I think I’m going to start lobbying the MS Society to fund another Phase III trial of Cladribine, since that’s what the Barts doctor Giovannini wants. Amazing that it’s had two successful Phase III trials but is not being marketed for MS.
I saw a Barts neurologist and I’m getting Cladribine in five weeks! Not the six months I was told - five weeks. I’m really excited. This could be the end of the downhill slope for me. I so hope so. I will post and say what happens.
I asked my local neuro (West Sussex) about trying Cladribine on the strength of the original post in this thread, followed by a lot of reading-up on it.
This made me see great potential in this medication - to help prevent further deterioration.
My neuro referred my query to the local “MS Expert” who sent me some background info and form to fill out, before going to the Royal Free hospital in Hampstead to be questioned, medically tested and scanned. A decision would then be made.
Have to confess, I was quite angry that this “MS Expert” was either completely unaware of my physical limits (my Neuro should have told him or he should have asked) and that travelling to Hampstead was a lot more than I could safely do nowadays …especially for scans and testing !!
I did ask why - with a Neurosciences Centre locally - we (…all the eligible people in West Sussex) were still expected to travel repeatedly into Hampstead for treatment, and why this couldn’t be administered locally? …No reply!!
Hi I am thinking about Cladribine too as I am deteriorating.
As the drug is not licenced for MS in the UK it could be that neurologists prefer to refer MSers on to a hospital where they have experience of administering Cladribine, as this seems to be the case with Alemtuzumab (though this is licensed for MS). In the MS trials what I read it was an oral tablet but Cladribine is only available now as subcutaneous formulation that is licensed for treating hairy cell leukaemia.
I know you mentioned why the pre tests and scan can’t be done locally to you. I have had a look at the inclusion and exclusion criteria for the MS Cladribine trial which might be why the whole process of administration needs to be done at the same hospital.
Barts is pretty horrible to get to (if you’re a wheelchair user, particularly). But the medical staff are great there and very keen to give people Cladribine. They give you a form where you specify that you would prefer Cladribine to other medications. I wish I had been able to choose Cladribine rather than Tysabri - still I suppose it’s all water under the bridge now.
If anyone wants the name of the doctor you need to get referred to for Cladribine, please PM me.
Barts Hospital is fairly near City Thameslink and Farringdon railway stations, so may be able to avoid using the underground if travelling from Sussex.
Now really counting down to having Cladribine. After a load of hassle with my dodgy blood test (looked like I had an overactive thyroid because of all the biotin I was taking), the doctors are now all happy. I’m back to being excited and optimistic about what this treatment is going to do for me.