My Fumaderm journey is over

[phil]

Hi Phil,

it's a shame that you cannot continue.
Would you care to tell us what the level of your lymphocytes is?
It is always good for us don't know about that.

It is known that a to low lymphocyte count, can be very risky,  you are then susceptible to the Jacob Cunningham virus.

I hope you can find a new good treatment as soon as possible.

Caroline

Hi Caroline.
this was my second time on Fumaderm and my lymphocyte dropped to 0.4
but i was only on 1 blue tablet a day.that's why they did this extra blood test.
also this time the check ups were very different blood every 4 weeks etc.they told me
it's because they now have many years of there own research.
when i was on them the first time my lymph went down to 0.1 but i cant remember
how many tablets i was taking.when i dropped down to 3 tablets a day my lymph rose to 0.4
and that's where it stayed all the time i was on that dose.although the lowest should have been 0.5
back then because the tablets were doing great things for me and i didn't feel ill they let me continue.

Phil

Hi Phil,

Thanks for your answer.
Yes, 0.4 is getting low, but still possible.

A value of 0.2 is the absolute edge, so below that is too dangerous. So the first time the 0.1 was tricky. They only hold on the 0.5 edge to be very secure, I think.
The approach of Bill, getting a high dose in one go, might also have worked for you and is possible because your were only on 120 mg, the result will be that you might go to the 0.5, which would satisfy your doctors. Perhaps something to keep in mind.
Their personal reseach, but I also think international data on DMF and a few PML cases makes them more careful.
It's correct that you do not feel ill with a low lymphocyte count, but the risk of getting something where your immune system cannot cope with is higher.

Hope your derm comes with a good alternative.

Caroline

Caroline
when they put me back on Fumaderm they told me 0.5 was the lowest this time.
when i asked why they said it was down to years of there own reseach.
as i said before they are very cautious now.

Phil