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

[Bill]

Sorry that you cannot continue with Fumaderm, but better to stay alive. You seem to be managed extremely well, which is the main thing. Is there a chance you could go on Fumaderm in future if your lymphocyte count recovers? I take one big dose each week, possibly to maintain a higher wbc count for the same efficacy of a larger divided dose. I say possibly because I am guessing that the lymphocyte suppression relates to the total dose.

Hopefully you will be put on another effective treatment very soon.

[Caroline]

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

[phil]

Sorry that you cannot continue with Fumaderm, but better to stay alive. You seem to be managed extremely well, which is the main thing. Is there a chance you could go on Fumaderm in future if your lymphocyte count recovers? I take one big dose each week, possibly to maintain a higher wbc count for the same efficacy of a larger divided dose. I say possibly because I am guessing that the lymphocyte suppression relates to the total dose.

Hopefully you will be put on another effective treatment very soon.

Hi Bill my lymph count has come up since i stopped will i ever take them again don't think so.
in the past Guy's had many people on Fumaderm now they have only a few.
Otezla is next for me but reading another thread on here that might not last.

Phil

[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

[Bill]

As you would know Phil, there have been PML cases with counts as high as 0.78. No wonder there is so much caution. My dosing regime is safe and seems to work extremely well for me, but without a clinical trial it is not a therapeutic option. A good thing there are many treatment options these days.

[Caroline]

As you would know Phil, there have been PML cases with counts as high as 0.78. No wonder there is so much caution. My dosing regime is safe and seems to work extremely well for me, but without a clinical trial it is not a therapeutic option. A good thing there are many treatment options these days.

Are you sure Bill ?
Where is that documented?

[Bill]

A bit higher, actually.

"In the first case, Nieuwkamp and colleagues noted that their patient had been taking compounded delayed-release dimethyl fumarate for psoriasis since June 2012.

She'd had normal leukocyte and lymphocyte counts before starting the drug, but hit a low of 792 cells/mm3 by June 2014. At that time, she tested negative for JC virus and was diagnosed with atypical ischemic stroke. But by mid-August, she'd been transferred to another hospital with progressive hemiparesis and somnolence.

She was treated but her condition continued to worsen and she died by the end of August, and an autopsy confirmed PML, with JC virus DNA found in both brain tissue and cerebrospinal fluid."

[Caroline]

A bit higher, actually.

"In the first case, Nieuwkamp and colleagues noted that their patient had been taking compounded delayed-release dimethyl fumarate for psoriasis since June 2012.

She'd had normal leukocyte and lymphocyte counts before starting the drug, but hit a low of 792 cells/mm3 by June 2014. At that time, she tested negative for JC virus and was diagnosed with atypical ischemic stroke. But by mid-August, she'd been transferred to another hospital with progressive hemiparesis and somnolence.

She was treated but her condition continued to worsen and she died by the end of August, and an autopsy confirmed PML, with JC virus DNA found in both brain tissue and cerebrospinal fluid."

Bill,

1) I guess you are talking about Psorinovo. That is the only slow release. Well it's NOT delayed release.
2) the measurement is always nasty, I have seen that there are very much different numbers around. With the numbers that are measured in my blood the values, but I don't know if it's meters or centimeters, must be between 0.5 and 1.2 ( I found this is wrong, it is between 1 and 3.5 as a default range)
So in the sense of cells/mm3, what is the normal value. Or how is it translated to my value, which I don't know, haha.
3) compounded in this sense means, factored by the pharmacy. There is no reason why this makes a difference, and therefore is mentioned.
4) at that time this message was very convenient for Biogen..., in the mean time also tecfidera has a PML case
5) if this the person who I think it is, she has definitely not followed the protocol that was described with Psorinovo and her doctor, her GP, did not read and used the instructions, which would have told her that she had to stop taking the drug.
6) there even may be other elements around in her status, that have caused this low value


Caroline

[Bill]

Cases like that one are outliers, but it still makes you cautious. For Phil, his Lymphocyte count remained low on 120 mg a day after 12 years of treatment. Is a low lymphocyte count the main reason for DMF treatment being discontinued? I feel that with a different approach the therapeutic value of DMF would be much greater.