[split] Dimethylfumarates and Psoriasis

[Caroline]

Yes, this is where I read most and saw pics,that was on this website Psoriasistherapie dot nl
My concern was - it all looks so promising, and all examples are in much better condition. I also read it should help around 75% but was not sure how is it confirmed or was there any study done? (Apart from Fumaderm, where there is much more studies... I am hoping it will be better than Fumaderm actually.) I have read on Polish forum that Biogen is preparing new drug called Panaclar and it will be replacing Fumaderm. It is supposed to be much improved version of Fumaderm that contains...... surprise - only DMF.........(!)
That made me thinking I really must try Psorinovo! after 1 month of preparing prescription and , uf, money I finally got some supply!
J.

Hi Joana,

Studies are interesting, but also influenced often by producers.
The person that has about 30 years of experience with Psorinovo, dr. Kunst, who has followed all his patients comes to a success percentage of 70-75 %.
So that is not is studie, it is 30 years of experience and know how over almost every patient that uses Psorinovo in the Netherlands.

Caroline

[Caroline]

My plan is to take

1x30mg for 4 days
2x30mg another 4
3x30mg further 4 days

and then to follow "recommended" Fumaderm schedule

1x120mg / week 2x120mg / week etc...

do you think it is too fast?
I am now taking 2x30mg and I have absolutely no side effects.

J.

Joanna,

To me this looks like quite a quick build up.
I myself have built up slowlier, more like
Week 1: 30 mg
Week 2: 60 mg
Week 3: 120 mg
Week 4: 150 mg
Week 5: 180 mg
Week 6: 210 mg
etcetera.
It will take a longer time, but gives a bit more information on the moment it will definitely starts working.
If it starts working you should stick with that dose and continue with that dose during the same time you have built up. So if it took you 9 weeks to build to "starts working", then you should also use 9 weeks for consolidation.
After that you can try to lower again by 30 mg /week until the point that you see it coming back. Then go up 1 step of 30 mg, and than that should be your dose.

Are you under control of a doctor?
Did you make a snapshot of your current bloodvalues?
If you need an overview on what to snapshot, I can send you some.

Caroline

Yes it has been prescribed by my dermathologist, however they have not much information about this medicine. I took detailed blood test, I will repeat it next month. So far all is in very good order and within its limits.

My idea was only to raise the dose faster as I expect it as not working in somehow below 250mg for sure?

Joana

Hi Joana,

What's necessary on information is available for the medication, most of it is on the website i mentioned. Your dermatologist can of course contact the patients group for possible more detailed info.
For e.g. Fumaderm there is really not more information available.

The working of the medication depends on the person. There are people that already react on 60 mg, and there are one that need, 8x120mg. This range is quite large.

So there is no need to build up quickly.
You need to give the medication its time to get working. It is not a quick solution.

Caroline

[Caroline]

Yes, this is where I read most and saw pics,that was on this website Psoriasistherapie dot nl
My concern was - it all looks so promising, and all examples are in much better condition. I also read it should help around 75% but was not sure how is it confirmed or was there any study done? (Apart from Fumaderm, where there is much more studies... I am hoping it will be better than Fumaderm actually.) I have read on Polish forum that Biogen is preparing new drug called Panaclar and it will be replacing Fumaderm. It is supposed to be much improved version of Fumaderm that contains...... surprise - only DMF.........(!)
That made me thinking I really must try Psorinovo! after 1 month of preparing prescription and , uf, money I finally got some supply!
J.

That is interesting, we did not know that yet.

Indeed surprising that it only contains DMF, but logical. Here in the Netherlands we already know for years that the "extra's" in Fumaderm are useless and only limit the max dose.
As Psorinovo is slowly released in the intestines and contains no extra's I myself did not choose for Fumaderm. Is it better than Fumaderm... I don't know, it is DMF, but constructed in a smarter way by a docter with tens of years of experience in that field.

I really guess that Biogen is also aiming at a slow release solution. That can be derived from a lawsuit that is going on, on the slow release principle of fumarates. It is claimed to be a new invention by 4 Copenhagen guys.
This patent is fought, as being prior art , by of course Mierlo-Hout (they are using the principle already for many years), and some other pharma's, among which is .................... right....... Biogen .

[Caroline]

Yes, BG-12
Tecfidera has just been registered here in Poland for couple months, its non refundable and patient must cover an outrageous price of 1500 EUR / month, which is way over monthly average salary in POL... :(

Thank you for warning Jim.

Could you tell me what final dose are you on with Psorinovo?
And Caroline? As it seems worked for you well, how many mg are taking daily?

J.

5 x 120 mg. That is right on the edge.

[LadyBug]

Hello again everyone!

I decided to continue here, as I think there will not be so many posts about the treatment...

I am now on 3x30mg of Psorinovo, so far absolutely no side effects, psoriasis somehow is getting more aggressive. :(

J.

[jiml]

Hello again everyone!

I decided to continue here, as I think there will not be so many posts about the treatment...

I am now on 3x30mg of Psorinovo, so far absolutely no side effects, psoriasis somehow is getting more aggressive. :(

J.

Thanks for posting your update.... I know you would like it to clear quickly, but it is still early in the treatment to start to see positive effects. The good thing is you are not having any side effects. That's a plus, the negative side is the psoriasis is getting worse, hopefully it's only temporary
Good luck

[Caroline]

Hello again everyone!

I decided to continue here, as I think there will not be so many posts about the treatment...

I am now on 3x30mg of Psorinovo, so far absolutely no side effects, psoriasis somehow is getting more aggressive. :(

J.

Hi Joanna,
Yes it is indeed possible that there is an increase, some people experience that, just keep on going.
No side effects is great, but sometime you should get a "flush", which is the best signal that it is working.

Thanks for the update.
Caroline

[LadyBug]

I was going to ask you, how do you feel this "flush". I am reading about this a lot, but in more details - how long does it last? Is it so bad or just felling like fever? Can it be so bad that some people stop taking the pills? Or rather stomach upset is the worst in general?

J.

[jiml]

I was going to ask you, how do you feel this "flush". I am reading about this a lot, but in more details - how long does it last? Is it so bad or just felling like fever? Can it be so bad that some people stop taking the pills? Or rather stomach upset is the worst in general?

J.

I can only speak from my experience and for me the stomach /intestine cramps were only at the beginning for a few weeks and Caroline tells me you are less likely to get them with psorinovo than with Fumaderm that I am on.
The cramps were for me only short episodes around 20 minutes or so some were quite painful but I learnt to take with a meal,and flush down with plenty of fluid. This helped to reduce them
The flushes are not hurtful they are quite pleasant they start at my scalp and move down my body with a very warm glow..... If you are out it can be embarrassing if you suddenly turn red when in company
But they are nothing to worry about or at least they weren't for me
Hope that gives some reassurance
Jim

[LadyBug]

Thank you Jiml for quick answer!

I am getting cramps, some flushes I think this is it as I recognize them similar to what was written here.

I am on 90mg / 30mg / 30mg now daily.
No other symptoms, I am rather same with my skin, actually I have a feeling that I am a little worse. I think I started with the right moment with Psorinovo to prevent the worsening!

J.