Marco's Skilarence thread

[jiml]

The blood test results that i did yesterday say : lymphocytes 2,3. In august i had 2,0. Blood count with formula all perfect. My main problem is high ferritin , only that.
Probably skilarence does not work for me.
After 2 months the results on my skin , arms and legs are not so exciting.
Monday i will call the Dermatologist and He will tell me what to do.

I will let you know

That's a shame if you aren't seeing any improvement after 2 months but there is still a chance it could work for you, I'm no doctor but do know it can be slow to kick in ... You have good bloods 2.3 lymphocyte count is good,  if it was me and there was any sign of improvement I would give it a bit longer before giving it up. As if it does work for you eventually it could give long term clearance like I have (over 7 years )
But you are right to wait and see what your dermatologist thinks but personally I would give it another month
Good luck

[Caroline]

The blood test results that i did yesterday say : lymphocytes 2,3. In august i had 2,0. Blood count with formula all perfect. My main problem is high ferritin , only that.
Probably skilarence does not work for me.
After 2 months the results on my skin , arms and legs are not so exciting.
Monday i will call the Dermatologist and He will tell me what to do.

I will let you know

Lymphocytes of 2,3 ??? WoW that is very high, my standard lymphos without medication never have been higher than 1,3 as far as I can remember.
If the research is true (done in Maxima Medical Centre), see RE: Bill's pure dimethylfumarate thread, then the lowering of the lymphocytes is a measurement (or at least has a relation) to the efficacy of the treatment. Your lymphos are not going down, which might be an indication that the treatment is not working for you. You can bring the study along to your Dermatologist, it would be interesting if he hasn’t seen it yet, to discuss.

[Bill]

I agree with Caroline, Marco. The efficacy of DMF seems tied to it dropping the lymphocyte count, as happened with Jim, Caroline and myself. Your body has the ability to compensate, which might be why it doesn't work for you. I believe that in the Netherlands patients will keep taking higher doses (Psorinovo) until it starts working or the side effects or other complications force cessation. That is what I did.

A shame you have to wait for another treatment.

Cheers

[Caroline]

I agree with Caroline, Marco. The efficacy of DMF seems tied to it dropping the lymphocyte count, as happened with Jim, Caroline and myself. Your body has the ability to compensate, which might be why it doesn't work for you. I believe that in the Netherlands patients will keep taking higher doses (Psorinovo) until it starts working or the side effects or other complications force cessation. That is what I did.

A shame you have to wait for another treatment.

Cheers

Yes, that was previously in the time that Psorinovo was still prescribed by doctors which have a more natural approach of looking at the patients as a whole “system”, so not only to the outside of a disease. In that time Psorinovo was developed and appeared to be working excellently and higher doses were possible, even up to 12, as it did not contain additives that were toxic (like there were in Fumaderm).
In that time, dermatologists did not prescribe Psorinovo at all, by them it was placed in the alternative corner, this totally against every research that was done at that time and the fact that Germany already was using Fumaderm for years.
They did envy the good results though.
As the result of some manipulations it was forced in the medical guidelines and insurance policies, that only dermatologists were allowed to prescribe DMF. (Bastards)
So finally after many years they started to prescribe Psorinovo (and some prescribed Fumaderm), which always has been and remained a drugstore prepared medication (not by hand, but with a machine). Lots of patients did very well on Psorinovo due to the enteric coating for the stomach and the slow release of the DMF in the intestines. The slow release made it possible to go up to 12 pills at least, which was not done by the dermatologists, as there minds were stuck into the max of 6 pills with Fumaderm, they still have not recovered from their mindstuckness.
Then Skilarence came to the market, which tries to push Psorinovo off market. They want the money of course. But Almirall made the colossal mistake to not make a slow release, which means that on average, 50% of the patients cannot cope with the side effects and they go back to Psorinovo, which is still being made and is still covered by the insurance.
(I don’t want to take your thread almost off topic, so I will stop now, but there is still lots more to tell about the life of DMF)

[sunnyman]

Hello All !

So my adventure with skilarence is over. My dermatologist said me that after 2 months the results are null.
He told me that tlll now in Italy ( he has a detalied study ) 60% of people have good results , 40% nothing.
What now ?
My psoriasis is not so bad. Pasi 6. He said slight to moderate. Only elbows and legs. No psoriatic arthritis.
The oral treatments for me are finished and the next step for me is : Bio Targets TNF-a or Bio Targets interleukin 12 and interleukin 23.
He spoke about Stelara and something else. He told that the beginning could be with softer treatments seen that my situasion is not so bad.
I never used Bio treatments and before to use he ordered me a lot of blood test for infections , hiv , and so on...

He told me to take the right time to think about this step. He told me that i MUST be more quiet and control anxiety.

I will see what to do and for now only 1 week of Holiday , a home made cream with zinc and enstilar.

Fingers crossed for you all with skilarence.

Marco

[Fred]

Shame it didn't work Marco, but it can take time to find the right treatment. Yes you must try and control anxiety, that and stress will make psoriasis worse.

As for the Bio's you can read about them all here: Biological Treatments For Psoriasis

Having tried both TNF and IL types I would recommend the IL types, and as you don't have psoriatic arthritis I would go for Stelara. I was on it over 6 years and have always found it the best for psoriasis as have a lot of our members.

Yes they will run lot's of tests like blood TB and in some cases x-ray before starting them, this is just to make sure you have no underlying problems that the Bio could make worse. Most people pass those tests without any problems.

Have a good holiday and chill out for a while then have a look through the thread I mentioned, also run a search here Search to find lots of threads from our members and the latest news about the ones you are interested in.

Fred.

[jiml]

Hi Marco as Fred said it's a shame the Skilarence wasn't for you, but there are still plenty of options and I see Fred had pointed you at the biological drugs which should work well for you

I wish you luck and hope you will let us know which one you get and if it's working for you
And I agree that anxiety and stress are bad for the psoriasis so hope when you get something that works it will reduce the anxiety levels

Have a great holiday

[KatT]

Hi Marco,

Don't know how bad your anxiety is and your stress level but it may be worth looking into anxiety medication if you haven't already.  Stress and anxiety can be very difficult to control.

I am taking Cipralex 10 mg per day since 2010 due to work related stress and anxiety and it helps a lot.  

Good luck!

[sunnyman]

Dear Friends ,

After 1 month without any therapy my situation get worse on the arms and legs. Nothing on the head,chest,back.
Not an explosion but new little spots , the classic Guttate P.
It was 1 month with healthy diet , a lot of fish , omega 3 , no red meat , friuts& veg , gluten free , only some beers but despite all this i haven't seen results.
I mean that Skilarence didn't clear me up but it kept under control my P , not improvement but neither worsening.
We will never know but probably i had to keep on the therapy for more months but it's only a guess....

What now ?
This week i will make blood test and chest x-ray and if the results will be good i could have Stelara or another Biologic treatment.

A question.... if someone has a hepatitis or other auto-immune disease can't get Bio treatment ?

Thanks all and let's hope well

[jiml]

Hi Marco and I'm sorry to hear that the psoriasis is starting to get worse since you stopped the Skilarence , yes it was probably beginning to work for you and probably giving it longer would have been a good idea in hindsight.
But putting that aside and moving on I hope the next treatment you get will work fast and clear you. If it's Stelara it should work well from what I read on here it's very effective

I don't know the answer to your question about hepatitis but hope someone will have the answer for you
Good luck I look forward to hearing the next step
Jim