[split] Dimethylfumarates and Psoriasis

[flagstare]

Hi Caroline

I am on a Fumerate (Bisoprolol ) Prescribed long term for an unconnected medical reason. I don't know if it is in the same family of meds you are talking about though.

[Caroline]

Hi Caroline

I am on a Fumerate (Bisoprolol ) Prescribed long term for an unconnected medical reason. I don't know if it is in the same family of meds you are talking about though.

Hi Tom,

No. Bisoprolol is a bèta blocker. It takes care of heart fibrillations, in fact it prevents the heart to go "on the run" so to speak.
Do you have a heart condition? (You don't have to answer if you don't want to)

Dimethylfumarates are quite a different kind. They prevent the immune system to become over active, or more simply said, they repair part of the energy cycle of your cells. The result is that psoriasis, which is an auto immune disease, does not come to expression.

Caroline

[flagstare]

Yes

[jiml]

Yes

Well I'm glad they are working

[Caroline]

Interesting. Got a mail with an copy of an article which was published in a women's magazine in the Netherlands.
It explains a lot about psoriasis. It is a good article as it indeed puts psoriasis on the place of an immune disease.
The last page almost completely is about Psorinovo, or Dimethylfumarates.

In the article they state that DMF is not patentable BUT we all know that Biogen is trying to patent the production process of DMF, how evil can one be. (last remark is of course a totally personal remark, I hate it if people/organizations take advantage of other people who are ill and cannot defend themselves. )

[jiml]

Interesting. Got a mail with an copy of an article which was published in a women's magazine in the Netherlands.
It explains a lot about psoriasis. It is a good article as it indeed puts psoriasis on the place of an immune disease.
The last page almost completely is about Psorinovo, or Dimethylfumarates.

In the article they state that DMF is not patentable BUT we all know that Biogen is trying to patent the production process of DMF, how evil can one be. (last remark is of course a totally personal remark, I hate it if people/organizations take advantage of other people who are ill and cannot defend themselves. )

That sounds very interesting I would like to read that but no doubt it is in Dutch and totally meaningless to me

[Caroline]

Interesting. Got a mail with an copy of an article which was published in a women's magazine in the Netherlands.
It explains a lot about psoriasis. It is a good article as it indeed puts psoriasis on the place of an immune disease.
The last page almost completely is about Psorinovo, or Dimethylfumarates.

In the article they state that DMF is not patentable BUT we all know that Biogen is trying to patent the production process of DMF, how evil can one be. (last remark is of course a totally personal remark, I hate it if people/organizations take advantage of other people who are ill and cannot defend themselves. )

That sounds very interesting I would like to read that but no doubt it is in Dutch and totally meaningless to me

Yes, it is in Dutch, but of course I can translate it. However that may take some time.

[Kat]

Interesting. Got a mail with an copy of an article which was published in a women's magazine in the Netherlands.
It explains a lot about psoriasis. It is a good article as it indeed puts psoriasis on the place of an immune disease.
The last page almost completely is about Psorinovo, or Dimethylfumarates.

In the article they state that DMF is not patentable BUT we all know that Biogen is trying to patent the production process of DMF, how evil can one be. (last remark is of course a totally personal remark, I hate it if people/organizations take advantage of other people who are ill and cannot defend themselves. )

That sounds very interesting I would like to read that but no doubt it is in Dutch and totally meaningless to me

Yes, it is in Dutch, but of course I can translate it. However that may take some time.

Well if you start now...... and I'm kidding. I'm sure that would be a lot of work. I do wish there was more information on the autoimmune part (the MAIN part) of psoriasis. All I can find is where it says it's an auto immune disorder treated by dermatologists. Immunologists treat mostly allergies so I find it confusing that we're sent for the "skin disorder" doctor instead of the doctor that knows more about our immune systems. But then, what do I know.

[Caroline]

Interesting. Got a mail with an copy of an article which was published in a women's magazine in the Netherlands.
It explains a lot about psoriasis. It is a good article as it indeed puts psoriasis on the place of an immune disease.
The last page almost completely is about Psorinovo, or Dimethylfumarates.

In the article they state that DMF is not patentable BUT we all know that Biogen is trying to patent the production process of DMF, how evil can one be. (last remark is of course a totally personal remark, I hate it if people/organizations take advantage of other people who are ill and cannot defend themselves. )

That sounds very interesting I would like to read that but no doubt it is in Dutch and totally meaningless to me

Yes, it is in Dutch, but of course I can translate it. However that may take some time.

Well if you start now...... and I'm kidding. I'm sure that would be a lot of work. I do wish there was more information on the autoimmune part (the MAIN part) of psoriasis. All I can find is where it says it's an auto immune disorder treated by dermatologists. Immunologists treat mostly allergies so I find it confusing that we're sent for the "skin disorder" doctor instead of the doctor that knows more about our immune systems. But then, what do I know.

Kat,
You are completely right.
If you read my history, it is somewhere on the forum in the myriads of posts I put in here, then you will find that I didn't go to a dermatologist, I went to a rheumatologist, this because my skin-psoriasis was not so heavy but I suddenly got pain in my feet and fingers.
In short I ended up with a belgian rheumatologist who told me that I had PsA, and that there were 2 possibilities, either it was controllable or I would end up in a wheelchair. How subtle one can be .

I went for a second opinion to the Amsterdam VU (university hospital) which he recommended as they were ahead on biologicals.
Over there a handsome doctor (some of them are really walked out of a book ..... ) told me that I should use MTX.
I did, but in a few weeks I got back to him to tell him that it was terrible, but he insisted. Stubborn as I am I did not follow his advice and stopped the medication.
By accident I heard of another doctor, and internist (don't know the english word) but a doctor that looks into the internal person. I went to him, an old not too handsome doctor and he directed me to DMF.
After a number of weeks it began to work, and now I am quite PsA free, not completely but very livable.

So.... for the conclusion, psoriasis and the treatment of psoriasis, do not belong in the field of dermatologists, but in the field of internists and rheumatologists. It is on a completely wrong location.

BUT.... whatever we can say, we still can see that the advanced dermatologists, the ones that are open to new treatments, do really go into the direction of Biologicals and DMF, although it is not their terrain.
Even one of the best dermatologists in the Netherlands, dr. Bing Thio, first tries all kinds of other dermatologist things, before he, on ones insistence prescribes bio's or DMF. I don't understand this guy, he can be world-famous prescribing DMF in the first line.

Now my situation is funny. I get the DMF prescription of a dermatologist, who has psoriasis himself.... and I am under control of my GP, so basically myself.

How weird real life can be.

Caroline

p.s. never forgot the handsome doctor though, but now I know he was an idiot and closed imaginative type of docter. Stay away of those guys.

[Kat]

Kat,
You are completely right.
If you read my history, it is somewhere on the forum in the myriads of posts I put in here, then you will find that I didn't go to a dermatologist, I went to a rheumatologist, this because my skin-psoriasis was not so heavy but I suddenly got pain in my feet and fingers.
In short I ended up with a belgian rheumatologist who told me that I had PsA, and that there were 2 possibilities, either it was controllable or I would end up in a wheelchair. How subtle one can be .

I went for a second opinion to the Amsterdam VU (university hospital) which he recommended as they were ahead on biologicals.
Over there a handsome doctor (some of them are really walked out of a book ..... ) told me that I should use MTX.
I did, but in a few weeks I got back to him to tell him that it was terrible, but he insisted. Stubborn as I am I did not follow his advice and stopped the medication.
By accident I heard of another doctor, and internist (don't know the english word) but a doctor that looks into the internal person. I went to him, an old not too handsome doctor and he directed me to DMF.
After a number of weeks it began to work, and now I am quite PsA free, not completely but very livable.

So.... for the conclusion, psoriasis and the treatment of psoriasis, do not belong in the field of dermatologists, but in the field of internists and rheumatologists. It is on a completely wrong location.

BUT.... whatever we can say, we still can see that the advanced dermatologists, the ones that are open to new treatments, do really go into the direction of Biologicals and DMF, although it is not their terrain.
Even one of the best dermatologists in the Netherlands, dr. Bing Thio, first tries all kinds of other dermatologist things, before he, on ones insistence prescribes bio's or DMF. I don't understand this guy, he can be world-famous prescribing DMF in the first line.

Now my situation is funny. I get the DMF prescription of a dermatologist, who has psoriasis himself.... and I am under control of my GP, so basically myself.

How weird real life can be.

Caroline

p.s. never forgot the handsome doctor though, but now I know he was an idiot and closed imaginative type of docter. Stay away of those guys.

Beware of cute doctors! Actually I have a couple of cute doctors, but luckily they are quite good. My regular doctor is an internist. He's my go to person and helps me decide when things are working and when things are not. I did see a rheumatologist, but he was only interested in whether I had psoriatic arthritis (which he said I do not). So he told me to check back if I experienced any problems and come back in a year as x% of people with psoriasis develop psoriatic arthritis so he thinks it's good to check it out every year.

I'm happy (sorta) with the dermatologist I have. He said he likes to start at the low end of treatment and work his way up from there. He started with topicals, then added the acitetrin and light therapy and next would be the bios. Right now it feels like we are still treating the skin but it sounded good that he wanted to do the least amount possible to treat it and build up from there.....plus he said the further we go up in the treatment, the greater the expense to me. Of course if it doesn't work and I end up there anyway, it will have been a waste of time and money but I figure he knows better than me (although I know that's not always true, I just know so little that I have to hope he's taking the right path.) If I haven't noticed a huge improvement by December when I go back to my regular doc (the internist) then I will be discussing with him if I need to see someone other than my current dermatologist.