Last reply 2 days ago
Tecfidera/Lymphopenia fail. Next DMT?

Hi all,

Seeking advice.

Has anyone been taken off Tecfidera due to developing lymphopenia?

If so, which DMT did you try next, and did your lymphocyte count remain stable with your next choice of treatment for RRMS?

Anyone had the same adverse effect happening repeatedly despite trying different DMTs?

Or any success stories where you might have developed lymphopenia with one DMT but not with another, despite both being a similar type of drug and with low lymphocytes listed as side-effects? For example, Tecfidera and Ocrevus are both immunosuppressants, right? Does that mean both will cause the same adverse reactions?

I’ve been taken off Tec after only 5 months due to rapid drop in lymphocytes, but after spending 3 of those 5 months in bed/housebound with a virus that had no chance of being defeated by my increasingly weak immune system, I’m nervous that the same will happen again with my next choice of DMT.

I would ask my neurology team, but the department is so under-sourced and under pressure at the moment that there doesn’t seem to be time for discussing the ins and outs of each DMT in a holistic way, and I wouldn’t want to add to their load. It’s more a case of ‘here are the leaflets, let us know ASAP which DMT you choose next’. Aargh!

I’d be interested in hearing your stories. Also, if anyone has a link to research or more info on the matter, that would be appreciated too.

Thank you,

Mer

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stumbler
1 week ago

jerbil
6 days ago

That’s an excellent link, and answers a lot of the questions. Heartening that Ocrevus is mentioned as a suitable follow up to Tecfidera as it seems to target something slightly different.

Just bumping this up, as I guess it’s one of the slightly more unusual questions. Maybe someone with direct experience of the issue might see it?


mererid
2 days ago

Thank you!

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