[split] Dimethylfumarates and Psoriasis

[Caroline]

Hi Bill,

You are probably better in chemistry than I am. (I don't understand a bit of it)
I hold myself to the information from my own thread Dimethylfumarates and Psoriasis which of course is no knowledge i know by myself, but is information from our dokter Kunst over here in the Netherlands.
So indeed I know that fumarates do something in the energy cycle of our cells, more even, that they are quite essential.
I also know that it makes no sense to use MMF as a medication. That DMF is transformed to MMF... I believe you immediately.

Caroline

[Bill]

Hi Caroline,

My knowledge is very rudimentary, I assure you. I have no idea why I got headaches or why my nose runs, but both seem due to the drug. But it is interesting to look at some of the research being conducted by brilliant people from a range of scientific disciplines. It gives an insight into the great complexity of investigating the action of a drug. My interest at present is to find out why taking DMF twice daily is more effective than the same dose divided into three.

Cheers,

Bill

[Caroline]

Apart from us normal people there are a number of very vague institutions in Europe that must be crowded with people who decide over our well being. That is weird and scary as "WE" are the real professionals on psoriasis... Aren't we?

If you read, or try to read, this article [web]https://www.clinicaltrialsregister.eu/ctr-search/trial/2012-000055-13/DE[/web] you will get an idea of what I mean.
Lots of people are involved in trials which concern our health, but of which we don't have a clue of what is happening there.
This case is about DMF and Fumaderm.
Rumours say that Almiral, the producer of Fumaderm, is close to a European wide registration of Fumaderm.
Psorinovo is far behind in this process, while it's characteristics may even be better and the working substances are equal.
Also Rumours are that biogen is trying to interfere in some way in the DMF market.
Overall interest in DMF is rising quickly. In my opinion due to the fact that biog** has seen and opportunity to earn a lot of money with it over the backs of the MS patients.

[jiml]

Apart from us normal people there are a number of very vague institutions in Europe that must be crowded with people who decide over our well being. That is weird and scary as "WE" are the real professionals on psoriasis... Aren't we?

If you read, or try to read, this article [web]https://www.clinicaltrialsregister.eu/ctr-search/trial/2012-000055-13/DE[/web] you will get an idea of what I mean.
Lots of people are involved in trials which concern our health, but of which we don't have a clue of what is happening there.
This case is about DMF and Fumaderm.
Rumours say that Almiral, the producer of Fumaderm, is close to a European wide registration of Fumaderm.
Psorinovo is far behind in this process, while it's characteristics may even be better and the working substances are equal.
Also Rumours are that biogen is trying to interfere in some way in the DMF market.
Overall interest in DMF is rising quickly. In my opinion due to the fact that biog** has seen and opportunity to earn a lot of money with it over the backs of the MS patients.

Heavy reading indeed... I have added to my reading list and will read it late tonight. So will comment after reading, it looks very difficult to understand.

[Fred]

Apart from us normal people there are a number of very vague institutions in Europe that must be crowded with people who decide over our well being. That is weird and scary as "WE" are the real professionals on psoriasis... Aren't we?

If you read, or try to read, this article [web]https://www.clinicaltrialsregister.eu/ctr-search/trial/2012-000055-13/DE[/web] you will get an idea of what I mean.
Lots of people are involved in trials which concern our health, but of which we don't have a clue of what is happening there.
This case is about DMF and Fumaderm.
Rumours say that Almiral, the producer of Fumaderm, is close to a European wide registration of Fumaderm.
Psorinovo is far behind in this process, while it's characteristics may even be better and the working substances are equal.
Also Rumours are that biogen is trying to interfere in some way in the DMF market.
Overall interest in DMF is rising quickly. In my opinion due to the fact that biog** has seen and opportunity to earn a lot of money with it over the backs of the MS patients.

I feel compelled to reply as we usually agree.

#1 How do you define normal? is it me, you, or the rest of the world.

#2 Someone needs to decide, are we the real professionals? I'm not sure, yes I know how I feel but I could never have invented the treatments I'm on.

#3 I can't read the article as it's Saturday evening, and I've had to much wine. Remind me to look another day.

#4 You always do this to me, when you say Biog** do you mean Biocon or Biogen ?

#5 Sorry I will head off to the private Psoriasis Club Gym that only certain members can see and do 3 press-ups.

[Caroline]

Apart from us normal people there are a number of very vague institutions in Europe that must be crowded with people who decide over our well being. That is weird and scary as "WE" are the real professionals on psoriasis... Aren't we?

If you read, or try to read, this article [web]https://www.clinicaltrialsregister.eu/ctr-search/trial/2012-000055-13/DE[/web] you will get an idea of what I mean.
Lots of people are involved in trials which concern our health, but of which we don't have a clue of what is happening there.
This case is about DMF and Fumaderm.
Rumours say that Almiral, the producer of Fumaderm, is close to a European wide registration of Fumaderm.
Psorinovo is far behind in this process, while it's characteristics may even be better and the working substances are equal.
Also Rumours are that biogen is trying to interfere in some way in the DMF market.
Overall interest in DMF is rising quickly. In my opinion due to the fact that biog** has seen and opportunity to earn a lot of money with it over the backs of the MS patients.

I feel compelled to reply as we usually agree.

#1 How do you define normal? is it me, you, or the rest of the world.

#2 Someone needs to decide, are we the real professionals? I'm not sure, yes I know how I feel but I could never have invented the treatments I'm on.

#3 I can't read the article as it's Saturday evening, and I've had to much wine. Remind me to look another day.

#4 You always do this to me, when you say Biog** do you mean Biocon or Biogen ?

#5 Sorry I will head off to the private Psoriasis Club Gym that only certain members can see and do 3 press-ups.

//1// definitely not you.
//2// true but most employees of farmaceuts neither, it are researchers and doktors that create them. True that we need farmaceuts to produce them. True that they need money for that. Not reasonable if that is way too much or overdone.
//4// who? Do I *********, *********?
//5// will join you in a minute, will help you with the push ups , [carol]must shift into my leathers[/carol]

[Bill]

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

[jiml]

Apart from us normal people there are a number of very vague institutions in Europe that must be crowded with people who decide over our well being. That is weird and scary as "WE" are the real professionals on psoriasis... Aren't we?

If you read, or try to read, this article [web]https://www.clinicaltrialsregister.eu/ctr-search/trial/2012-000055-13/DE[/web] you will get an idea of what I mean.
Lots of people are involved in trials which concern our health, but of which we don't have a clue of what is happening there.
This case is about DMF and Fumaderm.
Rumours say that Almiral, the producer of Fumaderm, is close to a European wide registration of Fumaderm.
Psorinovo is far behind in this process, while it's characteristics may even be better and the working substances are equal.
Also Rumours are that biogen is trying to interfere in some way in the DMF market.
Overall interest in DMF is rising quickly. In my opinion due to the fact that biog** has seen and opportunity to earn a lot of money with it over the backs of the MS patients.

I think I understand what you mean by professionals in the sense that we are experts on what works with our bodies, and are confronting psoriasis on a daily basis, rather more so than someone sitting in an office ticking boxes

Whilst I agree that we need these trials to determine the safety of the drugs we take , and after wading through that register of a test, I noticed there were no results, or if there were I missed them.. And the date of the trial was 2012.
It is quite scary that some committee in Central Europe could decide whether we can continue with a drug that has been working well for over twenty years

Biogen are marketing a very similar DMF drug Tecfidera for the treatment of MS, but hopefully they will continue to produce Fumaderm as well

[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

[Bill]

Hi Caroline,

Bagels are my limit. I find croissants a bit tricky, though in this age of YouTube I should have another go.

Getting drugs approved is an expensive process, and psoriasis sufferers requiring systemics isn't a big market. In Australia a company intending to market a therapeutic has to fund a trial in Australia regardless of any demonstrated safety and efficacy elsewhere. So a drug out of patent with a small market will not get approval here as it would not make economic sense for a company to do so. And it would make even less sense to market a much cheaper yet identical drug when Tecfidera could be getting government subsidies of about $50 million a year for raw material costing a few thousand dollars. DMF is far cheaper (under $20 US per year for me currently), more effective and much safer than MTX, but for the above reasons it is out of reach for many. It is a shame DMF has been banned as an industrial chemical in Europe because of incidents where it seems to have been misused. There is a myriad of chemicals that are far more hazardous if misused, muriatic acid and lye being prime examples. Why not ban them also?

Cheers,

Bill