I think Skilarence has stopped working

[Fred]

I’m sorry for being over sensitive but felt overwhelmed with the direct questions. I really would appreciate your invaluable knowledge as I am always learning. What does DMF mean?

DMF is "dimethylfumarate" the main ingredient in Skilarence, Fumaderm and Psorinovo.

I refer to Caroline, Jim and Bill as the DMF gang as they know a lot about it and use it in it's different forms.

[jiml]

Fred is right DMF is the raw ingredient of the tablets he mentioned and the Dutch have psorinovo which has no limit to dose size although the manufacturers of skilarence and fumaderm do limit the dose size to six tablets a day 
I hope you soon get over the infection and the skilarence starts to clear you again.

[Caroline]

Fred is right DMF is the raw ingredient of the tablets he mentioned and the Dutch have psorinovo which has no limit to dose size although the manufacturers of skilarence and fumaderm do limit the dose size to six tablets a day 
I hope you soon get over the infection and the skilarence starts to clear you again.

Indeed. And as I said
Fumaderm —- 6 tablets max, because it contains a second ingredient, MEF, which is toxic for the Kidnies.

Skilarence — 6 tablets max, but the reason is senseless, it has been copied from fumaderm, without research.

Psorinovo - no limitation in tablets. It basically contains the same as Skilarence, but has a slow release.

Fumaderm and Psorinovo already are available for many many years. Skilarence is new, only available for a few years. The makers forgot to make a slow release version, which means that not everyone can deal with it, because of the possibility of intestinal cramps.

[Caroline]

Fumarate is an important part of the energy cycle in our mitochondria, our cells. That cycle is called the citric acid cycle.
It is a sequence of chemical reactions,


It’s in Dutch, but you see the step with Fumaarzuur in it, which is another word for fumarate.

When this step does not work correctly, there will be a residue which triggers the immune system to start producing a correcting substance, cytokines they are mentioned, and too much of these cytokines cause your psoriasis. So it seems as if the immune system works against itself.

[Bill]

Hi Kerry,

It is unlikely that your dermatologist can stabilise your psoriasis with Skilarence. You should be pressing for other treatment options. Lymphopaenia is a common problem with dmf, and your dermatologist has no means to deal with it other than by pausing or reducing the dose, which rarely succeeds. I think you can reverse the lymphopaenia, but that is only my opinion and experience. I hope you can get some effective treatment quickly.

Cheers

[Caroline]

Hi Kerry,

It is unlikely that your dermatologist can stabilise your psoriasis with Skilarence. You should be pressing for other treatment options. Lymphopaenia is a common problem with dmf, and your dermatologist has no means to deal with it other than by pausing or reducing the dose, which rarely succeeds. I think you can reverse the lymphopaenia, but that is only my opinion and experience. I hope you can get some effective treatment quickly.

Cheers

But Bill… we don’t know how low they are… the vision of the dermatologist can vary over here, there are some that see the low edge of the common area it is supposed to be in already call low. That was the reason I asked it for at Kerry.

I do agree with you that the derm has no options in treating the lymphopaenia, if values are too low, the only thing that remains is reducing the dose.

Cheers.

[Bill]

If it were me Caroline I would pause dosing and begin supplementing twice daily with glutamine, n-acetyl cysteine and creatine. I would do this for a month, then have a further blood test. Should I get a recovery in my lymphocyte count, I would increase doses of dmf to between 500mg and 600mg taken every other day, and I would take the glutamine/nac/creatine supplement about an hour prior to dmf doses. Depending on the disease response, side effects, and ongoing blood test results, I might consider further alteration in dosing and supplementation. Would this work for others? I wouldn't have a clue. I only know what works for me, and that's a stumble in the dark most of the time.

Cheers

[Kat]

First, I have to say I am always amazed at the knowledge here! Caroline you have a very good grasp of how it works and Bill... wow, you constantly amaze me with how well you understand what works for you and what to do when things start not working.

And now I will admit that I understood VERY little of what either of you said. I couldn't self medicate because I'd probably overdose on something or at the very least be totally ineffective in my treatment. Now I consider myself someone of at least average intelligence but when it comes to science and particularly medical science I admit I feel a bit lost when it comes to understanding things.

But Kerry there is absolutely no doubt in my mind that you have received EXCELLENT information. But if you don't understand it no worries.... you aren't the only one! And if I'm the only one that doesn't understand then .... just don't tell me

[Bill]

Kat,

The important thing is that you are being managed by a qualified professional with access to many effective treatments. I might be able to play around with dosages and experiment with unproven supplements, but should dmf fail I will require the care of a dermatologist. I don't see much sense in suggesting things without the treatment guidelines. In Kerry's case 3*240mg daily is the maximum dose. A dermatologist could not tell you to take five at once if it is not in the treatment guidelines, and there is nothing to deal with a lymphopaenia. The guidelines suggest a dosing pause if the lymphocyte count drops to 0.7. I have had breaks in treatment of four weeks without a change in the count.

Cheers

[Kat]

Kat,

The important thing is that you are being managed by a qualified professional with access to many effective treatments. I might be able to play around with dosages and experiment with unproven supplements, but should dmf fail I will require the care of a dermatologist. I don't see much sense in suggesting things without the treatment guidelines. In Kerry's case 3*240mg daily is the maximum dose. A dermatologist could not tell you to take five at once if it is not in the treatment guidelines, and there is nothing to deal with a lymphopaenia. The guidelines suggest a dosing pause if the lymphocyte count drops to 0.7. I have had breaks in treatment of four weeks without a change in the count.

Cheers

Yes, I understand The reason we have doctors is to treat us (to the best of their ability as they have their own guidelines to follow) And I think it's great that you and Caroline and others who have a grasp of how your treatment works can share that knowledge! I will continue to be amazed by you all And I will continue to have to trust my doctors to treat me wisely, but the really good things are that I do understand people's experiences (side effects, if they've had success, etc) here with their treatment and I can take that to the doctor's visit with me. I don't get all the scientific stuff, but on rare occasion I do understand a bit so learn from it as well.