[split] Dimethylfumarates and Psoriasis

[Caroline]

Hi Caroline,

We all have our own experience of psoriasis, but that doesn't make us experts about what treatments will and will not work for ourselves or others. For example, I now take three doses of 600 mg a week, halving my previous weekly dose for the same effect. Is this because the drug is more effective taken this way or because the disease is abating? Would I get the same or a greater effect with a single weekly dose of 1000 mg, or two doses of 800 mg, and what effect will these different regimes have on other parameters like white cell counts? I dont know, so monitoring is essential. But I am very grateful for the research being conducted, as a better understanding of psoriasis and psa will provide answers to such questions and ultimately lead to better treatments, be they better use of existing drugs or the development of new drugs.

Cheers,

Bill

Hi Bill,
Surely true what you are saying. About the monitoring and the effects of the doses and so on. What I see in practice is that the effects of a medication are checked in a trial, which may indeed last quite long. But after the trial was finished and a statistical yes or no is coming out. Mostly only the yes will continue in either more research or release to the public.
Basically this is right.
But what I have seen often is that monitoring is done, e.g. On lymphocytes, but what is done with all this monitoring, often it is way after the trial, is done by GP's. Will it ever return at the source so things can be changed.
E.g. MTX, we know from the longer effects, that it is bad for your health, we, as experts because we are patients, know that. Even the medics know it, still the keep on prescribing it. Why ? Well that is because of the protocol, that some box-ticker, has made. They don't look are not even involved in the patients. They don't care about your health. They only care about the direct cost of the medication. That this often is a penny wise pound foolish approach, we all know, but they don't care.

In the case of DMF, one sees that a few doctors, about three, have bitten themselves in the matter, did all the research, but also did 25 years of monitoring and studying patients results, that is the way it should go, it has led........

(Oh wait, got to get the croissants out of the oven, will continue.....but don't want to lose what I typed) Mmm, they are looking quite well.

It has let to al least two medications that are in use and to much knowledge on DMF. That has been hardly picked up by the medics, while proven successful.
Only now it seems to be picked up more and more by the farmaceuts. And somewhere, almost undetectable and unreachable, the EU is in between. And that is the scary part indeed, as Jim is also saying.

Anyway concluding, yes I agree with you, research is very necessary and useful, but I sometimes doubt the approach. As this can have a large effect on our health.
Also the scary observation is that apparently nobody on psoriasisclub was ever in a trial.......!!!
While there is a pile of knowledge over here.

Cheers,
Caroline