[split] Dimethylfumarates and Psoriasis

[Bill]

I found another site claiming the research is not peer reviewed:

<While we’re not clinical professionals here at HighYa, we think it’s important for manufacturers to open their clinical trials to peer review, so that those who are clinical professionals can attempt to duplicate the results or find flaws in the methodologies.

As far as we can tell, not only are these studies not publically available (so you can read through them yourself), they don't appear to have been peer-reviewed, so there’s no way for everyday consumers to understand if they hold any significance.

Even then, if we were to sweep away these major concerns and take the results of these studies at face value, only one (the Dr. Nieman study showing reduced cholesterol in obese women) reflects any real-world benefits.>

It is not as if they are just hiding the recipe. They also don't want the testing scrutinised. That is dodgy.

Cheers

[Caroline]

I found another site claiming the research is not peer reviewed:

<While we’re not clinical professionals here at HighYa, we think it’s important for manufacturers to open their clinical trials to peer review, so that those who are clinical professionals can attempt to duplicate the results or find flaws in the methodologies.

As far as we can tell, not only are these studies not publically available (so you can read through them yourself), they don't appear to have been peer-reviewed, so there’s no way for everyday consumers to understand if they hold any significance.

Even then, if we were to sweep away these major concerns and take the results of these studies at face value, only one (the Dr. Nieman study showing reduced cholesterol in obese women) reflects any real-world benefits.>

It is not as if they are just hiding the recipe. They also don't want the testing scrutinised. That is dodgy.

Cheers

Thanks Biil.
I will check on that. Indeed it is very strange that peer-reviews have not been done.

[Caroline]

Continued from RE: About to start Fumaderm

Once you have been on the drug a few months and have developed no liver or kidney problems, it is a matter of balancing efficacy with a safe lymphocyte count. I am not so convinced of the slow release concept as I take a large dose of 99% DMF (~830mg) twice weekly. I get greater efficacy for both p and psa with this dose than I would with three daily doses of 240mg. If the slow release concept were valid, I would expect that a number of small doses would be more effective than a large dose over a set time. For me this is not the case. I have tried a number of different doses. A little over 800mg is optimal. Larger doses have greater side effects with a less than proportional increase in efficacy. Smaller doses have a greater than proportional drop in efficacy. But if DMF does not work, try something else.

Indeed Bill. I even agree with you.
I am convinced that your approach, 1x 830 mg, twice weekly, is probably the better way. So that would be the best way to use DMF.

But... yes.... here is the but...  

We are dealing with dermatologists, for whom Psoriasis is only one of the diseases they handle. DMF is one treatment method for that. And... few of the dermatologists are knowledged on DMF, they know what to prescribe and stick to the limits that the pharmacist has given in the manual.
They also know that they have to be very scary for PML, caused by too low lymphocytes.
That is it for most of them, only a small group knows more.

So that means that you are stuck with a "normal" scheme of taking the drug every day on a certain time of day. This is hardly ever accompanied by a food scheme, or hints how to take them.
If you are coming from that starting point, and if you realise that DMF is irritating for the gut, then it is no wonder that lots of people have tummy cramps. And seen in that light it makes sense that a slow release version will reduce at least that tummy cramps and will make it possible to use higher doses than the standard max of 6x120mg.

This idea of having a slow release version has been invented by a Dutch doctor who has studied Psoriasis during the whole of his doctors life, and has improved the version of the original finder of DMF, Dr. Schweckendieck.
So this means that 35 years of experience and at least a thousand patients only by this doctor alone have been treated with the slow release version with a very good result.

And again, I am sure that you have enhanced the way of using DMF, but unfortunately that is not a useable method in mainstream medicine. I certainly applaude for   what you have reached. It is enlightening for anyone who wants to step in your footprints. When talking to people about DMF, I always use you as the extreme example of the cheap and very good approach..