My DMF adventures

[Caroline]

The hair loss has intensified. My initial literature search didn't reveal anything, but perusing some MS forums led me to realize that some people have profound hair loss with DMF, with the same situation as me: my hair has thinner follicles and comes out when I wash it. One study found that the hair began to regrow without stopping the Tecfidera, but I'm reading about the experience of other people who never got it back. I'm nervous either way...I've been on DMF now for three weeks at a low dose with no other side effects or desired effects, and I'm not sure if I want to stop, keep a low dose, or try a higher dose to get answers quicker on whether or not the hair loss will stop or get even worse. Since I am not finding the same sort of data on Fumaderm and it's composition of several esters, I may consider taking a lower dose and also taking my Psorex supplement, which has monoethyl fumarate (not the diethyl fumarate liquid I ordered from a lab previously). Because it's not on the label as a possible side effect, most physicians say it's something else, not the DMF causing baldness.     Ideas?

Nick,

I have never heard, with anyone, of loosing hair while using DMF, nor have I experienced something like that myself, no hairloss at all.

It may very well be that a low dose just does not work, lowering the dose then will not help. Over here the protocol is to slowly increase the dose, starting with 30 mg each week until something starts to happen. At that point the increasing of the dose is halted and kept on that level until it has done its work, at which point it may be lowered a little bit again.
All that time the blood is monitored, specifically on lymphocytes and the most important kidney and liver functions.

You can try to use some MEF, but then remember:
1) It does not do anything for your psoriasis.
2) It is toxic for your liver and kidney, so be very careful. In Fumaderm it is the cause that it is limited to max 6x120mg dose.
3) In Fumaderm it is only used to speed up the reaction, but the most recent Almirall study shows that finally it is not more effective.

So basically... I think it is something else causing your hairless but would not know what.
And, I am not surprised that you don't see any change yet, DMF is a slow burner, it took me at least two to three months before things started to happen.

Cheers,
Caroline