My DMF adventures

[Bill]

I am amazed that people can swallow 1200 mg a day. I am tempted to experiment with bigger doses but I am cruising along nicely with my current regime. One question: Do lymphocyte counts always recover on DMF? It certainly has been so for Jim and for me too I hope. I had the best blood taking ever (no mark) on Monday, and I will get the results early next year.

Cheers,

Bill

[jiml]

I am amazed that people can swallow 1200 mg a day. I am tempted to experiment with bigger doses but I am cruising along nicely with my current regime. One question: Do lymphocyte counts always recover on DMF? It certainly has been so for Jim and for me too I hope. I had the best blood taking ever (no mark) on Monday, and I will get the results early next year.

Cheers,

Bill

I'm not sure but I believe they will always recover Bill as long as they are not left too long at very low levels, when you are susceptible to opportunistic infections including PML

[Bill]

That is good to know, Jim. I will probably have a dabble with 1000 mg in the New Year after I get my test results. Going by what I have observed so far, the larger dose should do more for the psa. Last time I tried 1000 mg I did not know about l-cysteine and the side effects were a bit much for me. It probably would be most sensible if I started about four weeks from my next blood test, which would make it mid February.

Cheers,

Bill

[jiml]

Just be vigilant Bill, I think you should be ok as long as you are aware of the risks and don't leave it too long between tests ....as you know from your reseaerch the few cases of PML are due to poor monitoring and extended time between blood tests

[Bill]

Thanks, Jim. I am nowhere near PML territory: It has not occurred above 0.78, and given that only one case has occurred it is extremely rare at that level.

Cheers,

Bill

[Caroline]

I am amazed that people can swallow 1200 mg a day. I am tempted to experiment with bigger doses but I am cruising along nicely with my current regime. One question: Do lymphocyte counts always recover on DMF? It certainly has been so for Jim and for me too I hope. I had the best blood taking ever (no mark) on Monday, and I will get the results early next year.

Cheers,

Bill

Bill,

As far as I heard from a couple of experienced doctors, they always come back.

[Caroline]

I am amazed that people can swallow 1200 mg a day. I am tempted to experiment with bigger doses but I am cruising along nicely with my current regime. One question: Do lymphocyte counts always recover on DMF? It certainly has been so for Jim and for me too I hope. I had the best blood taking ever (no mark) on Monday, and I will get the results early next year.

Cheers,

Bill

Yes, but that is the effect and simple solution of the slow release.

[Bill]

I saw one post on another site made in 2009 from a woman on 1200 mg a day: Clear skin and good control of the arthritis. Is there ever the prospect of reducing the dosage with psa? My psa is greatly reduced, but it is far from gone; The main discomfort now is from corrective stretching, but I can sneeze, cough, sit and sleep without any trouble.

Cheers,

Bill

[Caroline]

I saw one post on another site made in 2009 from a woman on 1200 mg a day: Clear skin and good control of the arthritis. Is there ever the prospect of reducing the dosage with psa? My psa is greatly reduced, but it is far from gone; The main discomfort now is from corrective stretching, but I can sneeze, cough, sit and sleep without any trouble.

Cheers,

Bill

Bill,

I will contact you somewhere today, but currently occupied.

Cheers,
Caroline

[ImtheIinteam]

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?