My DMF adventures

[jiml]

I doubt it's the dmf causing the baldness, but I am concerned that you are mixing with other things that might not be helpful
Dimethyl Fumerate shouldn't have that effect. Psorinovo is pure DMF in a slow release and the people here using that have not mentioned hair loss

You now mention diethyl fumerate and monoethyl fumerate. Why are you considering these?
The path you are treading is looking precarious to me

If you stick to the DMF you should be ok but look at something else you're using that might be causing hair loss

That's my opinion

[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

[Bill]

Hi Nick,

With the truckload of supplements you are on I would be worried about toxicity. You may also be taking toxic fumaric acid esters for all I know. I should be relieved that you do not have a fascination with colloidal silver. I have had no hair loss since I went on DMF in November 2012. I started on a 720 mg divided daily dosage and had an immediate response: Not good for lymphocytes though.

Maybe you could change your nic to "Imtakingthepiss". I am having trouble recognising a treatment plan. Leaving things so complicated is asking for trouble.

Cheers,

Bill

[ImtheIinteam]

I have no desire to turn my already discolored skin gun-metal blue, so colloidal silver isn't on the treatment plan.    The only "new supplement" I'm on is Boron, but I searched for sudden hair loss for any of the other supplements I'm on (mostly vitamins and minerals) and found nothing. The reason I'm considering taking 100mg of monoethyl fumarate daily is that I found plenty of case reports and some legit research on Tecfidera causing hair loss of the nature I'm experiencing, but none on Fumaderm with it's combination of several esters. Since a few people mentioned that their hair never came back, I don't see an alternative to stopping the DMF even though I haven't been on it long enough to see if it will help my skin. So frustrating. There is no way the hair loss is caused by anything else. I may be crazy, but hair loss doesn't appear randomly: I will get some thyroid labs and verify my minerals and electrolytes aren't off, though.

[Caroline]

It doesn't fit though.

The result of the hair loss with Tecfidera can be something different.

With Psorinovo, 100% DMF, there is no hair loss known, but I will try to verify that for you.

If i were you I would avoid the MEF, it is useless and toxic as I said before, your kidneys and liver are more important than your hair.

[Bill]

I would also observe that you have a substantial unmanaged illness: That of itself is enough to precipitate bouts of hair loss. Treatment wise you are taking a bio which has lost efficacy, ldn which is rubbish, and numerous supplements which may or may not be indicated. With regard to your use of DMF, you are not following the established protocol. Your dosage currently could be less than a tenth of a therapeutic dose for you, so it is likely doing nothing for your disease.

I think that you should quit your diy odyssey and hand over the steering to a dermatologist. You are making bad decisions with potentially harmful outcomes. Hair loss is the least of your worries.

Cheers,

Bill

[Bill]

I'd also note that l-cysteine is a component of hair, skin, nails and GSH. DMF increases GSH production, and as l-cysteine is usually the limiting amino acid for GSH production, it is not hard to see a deficiency developing, especially with the excess skin production of psoriasis. So while there may be a mechanism for hair loss with DMF, it would only be secondary to an amino acid deficiency.

[ImtheIinteam]

You may have a point Bill about it being related to glutathione, although I started cysteine before taking DMF without a problem. I talked to a physician I work with and got him to prescribe me labs: thyroid (potential culprit for hair loss there), liver, kidney, lymphocytes, etc. are all perfect, so for now I'm still off the DMF. I did increase my Biotin and kelp/iodine intake and the rate of loss has slowed down, so hopefully I will be able to try it again soon. I have an appointment coming up with my dermatologist, so I will see what he thinks first.

[Bill]

Hi Nick.

What are your chances of getting Cosentyx? It seems to be very effective. I am off DMF for a bit as my lymphocyte count dropped. I suspect that DMF sensitizes lymphocytes to sunlight, so I will cover up from now on. You might think sunlight a good way to control psoriasis with a reduced DMF dosage, and you would be right. The only trouble with that is that the sunlight doesn't get to the lymphocytes in the joints. This raises the idea of targeting affected joints with DMF and low dose radiation therapy.

Anyway, I hope you are getting useful treatment. Untreated disease can send you on a lot of tangents.

Cheers,

Bill

[ImtheIinteam]

Update time!   I went off DMF for a while, hair loss slowed, went back on, hair loss began again after a month or two, so I quit it again after about 3 months--didn't really seem to make a difference. I've been on and off Otezla per my dermatologist twice since then (insurance issues), but I'm pretty sure that it increases the spread of the psoriasis on my neck (anyone else see this?), although it does look slightly better.  Since it sometimes helps and sometimes does nothing when I'm on it for a few months, once I run out of hoops to jump through I'm giving up on Otezla too.  I'm wary of Humira and the like, but we'll see if my zinc supplementation and mercury chelation helps--it makes a big difference when I'm on those supplements, but if I mess up my regimen just a little bit, I can see the difference and it takes a week or so to get it under control again.