Last reply 9 months ago

Hi all, I’ve just had a neuro appointment where I found out that I have new lesions after a suspected relapse in September 🙁 – I’ve been on Tecfidera for 2 years but clearly it’s not working anymore. My neuro has suggested I go on either cladribine, fingolimod, or lemtrada – his preference is cladribine.

Because it’s so new, there aren’t that many experiences of people taking cladribine online, so I just wondered whether anyone had experiences they could share?

Thanks so much

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9 months ago

Hi @omega-female

I have been on fingolimod for 4 years and although it may have stopped relapses it did not stopped a rapid decline. Now although spms I still have active disease so in the process of getting cladribine. I think cladribine is a good choice it may stop a bit more this beast…..lemtrada may have worse secondary effects……nothing is 100% effective, abit of a gamble….

9 months ago

fingolimod works with a different method then Tecfidera but its in the same class for effectiveness. If you have active disease that isnt held at bay with Tecfidera, I would personally go for something more potent at this point. You dont want to find out that Gilyena didnt work. Again just a personal opinion.

9 months ago

Cladribine isn’t that new, it’s just newly licenced for MS. It has been used to treat MS for about 10 years in various trials, so there is quite a lot of information available. The Barts Blog in particular has a lot of information about Cladribine for MS, and if you search for it on here there are a few personal stories. I’m about to start taking it on Monday, so I will post updates. It’s not the easiest drug to find personal stories about, but you can if you search here and on the MS society chat pages.

I wouldn’t go for Lemtrada at this point in time, because there are better option now and the risks are very high. Have you been offered Ocrevus, or asked for it? What about Tysabri?

9 months ago

I’ve taken cladribine, started about 2 years ago. It’s pretty good, surprisingly easy to tolerate. I took the doses at home at night, slept well and went to work the following days. The Barts people have been all over it, I used their protocol:

9 months ago

Thanks all for your responses, @edgarleroy, how have you found cladribine? Any side effects?

9 months ago

Like I said, eeeasy to tolerate. The drug is cleared from your bloodstream in about 1 day. It gets into and then slowly kills your lymphocytes (various types of B- & T-cells) by messing up some cell machinery. The 1st doses go for a few days, then over the next couple weeks the lymphocytes are killed, so you don’t get dose reactions.

To avoid toxic side-effects, you measure the lymphocyte levels in your blood. The danger comes if your concentrations get too low (lymphopenia), leaving you more susceptible to infections or getting tumors. If you and your doctor are careful about dosing, you don’t get lymphopenia. I also took antivirals for a couple of months to prevent infections. Only a couple of blood tests for each dosing cycle is required.

A year later, the dosing cycle is repeated. There is long term depletion and repopulation of immune cells, leading to a less overreactive system.

This drug has a lot going for it. Just the fact that you don’t need to dose very often is great – you can forget, while knowing in the back of your mind that you haven’t.

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