[split] Dimethylfumarates and Psoriasis

[Fred]

I wish I could remember the detail but sadly I just remember the relief when it worked

Another good reason for members to start their own thread on Psoriasis Club, you would have been able to look back and find out.

Exactly Fred and if I had been a member three years ago I would have had a record.... Sadly it's only just over a year since I found the club.

Well you have a couple of very good threads going now Jim so you will have a good reference for the future.

Sorry, going off topic.

[Caroline]

Hello everyone!

Today is my 35th day with Psorinovo.

I was quite desperate and I raised and changed some doses up to 120mg in the morning and 240mg in the evening. It was just too much for me, especially on my face.

The good things - I am not sure how it goes when it works exactly. From what I saw on some pictures from the website that you mentioned, I can tell that most of my skin changes are now bigger but flatter. My skin was mostly harder and more popcorn-like structure, now I would tell it is a little lighter and flatter. However it spreads more wide in my opinion. I will take photos soon, as now not much to compare I think, to notice enough difference in the pics.

How did you notice positive changes for the first time? How would you describe the process of clearing when it started?

I have question, does Psorinovo get state refund in the Netherlands? Or everyone just pays regular price?

good day for everyone!
J.

Hello Joana,
Well, you are a bit in a hurry.
Be cool , in your reaction I read that already things are changing. Maybe it seems to spread wider but I understand the intensity is lower. So this gives me the signal that there is something working. So now don't go much higher so fast. You are now on three pills, that is quite low still, but already something is reacting.
To give you comparison data, with me only after three months things started to change. That means that after three months the pain in my joints started to reduce and one of my fingers that was totally swollen started to become slimmer again.
At that point I stopped the increasing of the medication and kept it on this level for another three months.
You must give your body time to adjust and time to heal. This is not a medicine that 'immediately' removes everything, but it takes its time.

We normally get refunds from our insurance, and the refund for Psorinovo is paid out of the basic insurance. There are small restrictions in that it should be prescribed by a dematologist, which is basically nonsense or with some insurance companies also an internist will do.
Lots of patients circumvent this, they ask the dermatologist for a kind of certificate and than prescription and checks are done by the gp.
Sometimes there is trouble with the insurance, but on the Psorinovo website there is a list of all insurers and how they refund, so possibly you can change to another one.

Did this answer your questions?
Caroline

[Caroline]

Oempf....
This morning had a flush on the motorcycle, with my helmet on... That's hot !!

[Fred]

Oempf....
This morning had a flush on the motorcycle, with my helmet on... That's hot !!

That's interesting, when you said about flushes with DMF I thought you meant your skin just went red. I never thought about you getting hot too, does it last long?

[Caroline]

Oempf....
This morning had a flush on the motorcycle, with my helmet on... That's hot !!

That's interesting, when you said about flushes with DMF I thought you meant your skin just went red. I never thought about you getting hot too, does it last long?

Yes, you get very warm, which is a bit of logical as there is a lot of blood going to the exterior of your skin.
Duration is between 20 - 30 minutes.

[Fred]

Oempf....
This morning had a flush on the motorcycle, with my helmet on... That's hot !!

That's interesting, when you said about flushes with DMF I thought you meant your skin just went red. I never thought about you getting hot too, does it last long?

Yes, you get very warm, which is a bit of logical as there is a lot of blood going to the exterior of your skin.
Duration is between 20 - 30 minutes.

Yes now you say it, it is logical. I had just never thought of the connection before in the use of DMF and a flush.

Thank You.

[LadyBug]

Hello Caroline,

yes your answers helped a lot. I am wondering how to get the refund here, just thats why I asked. :( as I am counting if I have to take 5 pills / daily or so it will become quite expensive... :(

And I just had cramps this morning, surely not as hot as you! However in general I feel like never before, with my temperature, especially now when winter is around. I dont feel cold feet or hands anymore!

[Caroline]

Hello Caroline,

yes your answers helped a lot. I am wondering how to get the refund here, just thats why I asked. :( as I am counting if I have to take 5 pills / daily or so it will become quite expensive... :(

And I just had cramps this morning, surely not as hot as you! However in general I feel like never before, with my temperature, especially now when winter is around. I dont feel cold feet or hands anymore!

Hi Joana,
Yes, that's nice isn't it ? Those warm hands and feet. I enjoy it also, it's one of the positive side effects.

What you can investigate is perhaps the possibility which is used over here also. In the Netherlands the substance DMF is in an index, the so called Z-index. This is an index which contains working substances for diseases (at least that is what it is served for). In the netherlands the index says that DMF is capable for the fight against psoriasis. So the working substance is accepted.
It is this route that is followed for Psorinovo and the insurance company. Because the working substance is DMF, Psorinovo contains this, which is communicated with the insurance and with enough pressure and reference to this index, they are willing to reimburse.

You could perhaps also search for a European index, I don't know of it, but it is possible that it exists.

Caroline

[LadyBug]

yes! warm hands and feet and overall feeling is very pleasant!
I feel its itchy, that means its about to break out again... I don't know what to think, I keep scratching like crazy and cant stop it. Raised the dose now 240mg after breakfast and 240mg after supper...

Should it stop finally new patches from coming out??? Or some patches keep coming out while others keep disappearing?

J.

[jiml]

yes! warm hands and feet and overall feeling is very pleasant!
I feel its itchy, that means its about to break out again... I don't know what to think, I keep scratching like crazy and cant stop it. Raised the dose now 240mg after breakfast and 240mg after supper...

Should it stop finally new patches from coming out??? Or some patches keep coming out while others keep disappearing?

J.

No I don't think the itchy feeling is it's about to break out again but I know the feeling you mean, I used to get it as a flare was starting
it probably or hopefully means something is working on your skin from the inside.
It's three years since I started and I cant remember all the details apart from I was fairly clear when I started because I had just come off methotrexate.

Yes it should stop new patches breaking out. Ive never had the itchy feeling since being on the tablets although one or two on here complained of itchiness on Fumaderm but you aren't on that