My insights on Skilarence

[Mac092]

Hi Everyone,

Been almost 2 years since I posted, so apologies for my absence! I've noticed a number of people sharing their experience with Skilarence and I just thought I'd do the same, in case it could help anyone.

I've had guttate psoriasis 8/9 years. Not sure of any of my scores, but my derm considers it severe. I have tried topical treatments with no success as well as light treatment with limited success. Approx 4 years ago I was put on Fumaderm and it was like magic, 100% clear. 2 years ago I did have a mini flare up when my dosage was reduced too low but it corrected itself once I increased my dosage and it stayed steady on 4x120mg a day.

This summer I was moved onto skilarence. Initially I noticed no difference, except I had no side effects. Literally no flushing which I used get with Fumaderm every couple of weeks. After 6/7 weeks on skilarence I had noticed a few spots here and there, however nothing to be worried about. At the start of September I got the flu and 2 weeks later I encountered my first full blown flare up in 4 years. I have since been moved up to 6x120mg a day and the hope is it will bring things under control. I am currently on the higher dosage just over 2 weeks so it may take more time to kick in. I will keep this updated for anyone going through something similar.

So far I definitely think Fumaderm was the better drug, but beggars can't be choosers and I'm gonna stay optimistic for Skilarence

If anyone has any suggestions on supplements that can be taken with skilarence please let me know, I am considering getting Vitamin D tablets and have seen people mention Omega 3???

[Fred]

Welcome back Mac. 

I tried Omega long time ago but it never made any difference. Good luck with Skilarence.

I will move this thread to Prescribed Treatments For Psoriasis as it is better suited there.

Regards.

Fred.

[jiml]

Hi Mac and thanks for updating on your treatment  I have roughly the same experience as you and was on Fumaderm for 7 wonderful years with virtually no sign of the psoriasis and it even kept my psoriatic arthritis under control when I upped the dose from
4 x120mg to 5x120mg and like you this summer they have switched me to Skilarence and I am staying on the same dose of 5 a day.
Since being on the Skilarence I have some plaques behind my ears and up into my scalp which I am using enstilar and that seems to be helping

I must admit that I had more confidence in Fumaderm as it served me well I guess time will tell with the Skilarence
Another thing I have noticed is going to the loo I get a lot less warning than before when on Fumaderm .  ..now if I feel a rumbling I head for the nearest loo
I haven't had a flush or abdominal cramp though since starting

[Bill]

Hi Mac,

I agree that Fumaderm is marginally the better formulation of the two, but I doubt that either is as good as Psorinovo. I am currently taking 430mg of 99% dimethyl fumarate as a raw chemical two or three times a week to keep things under control.

As for supplements, I have tried many and think they do sweet nothing. However, I am currently testing daily 5mg folic acid along with a multi b vitamin after reading some case reports. Probably another silly idea, but it is not hard to do. I hope your disease settles down quickly.

Cheers

[Mac092]

Hi Mac,

I agree that Fumaderm is marginally the better formulation of the two, but I doubt that either is as good as Psorinovo. I am currently taking 430mg of 99% dimethyl fumarate as a raw chemical two or three times a week to keep things under control.

As for supplements, I have tried many and think they do sweet nothing. However, I am currently testing daily 5mg folic acid along with a multi b vitamin after reading some case reports. Probably another silly idea, but it is not hard to do. I hope your disease settles down quickly.

Cheers

Cheers for the advice! 

Psorinovo has never even been discussed by my derm, but last time I was with them they did say that if Skilarence doesn't cear this up in a couple of weeks I would move onto stelara.. Not overly passionate about needles so hoping it'll be clear by then

[jiml]

I hope you will be clear or at least showing signs of clearing by then. It should work if Fumaderm did as the basic ingredient is the same.

Psorinovo would not be discussed because I believe it is only available in the Netherlands as a prescribed drug, although I'm sure Caroline has said they will export it to other countries and there is no limit to the size of dose like skilarence
But I doubt it would be any different to Skilarence as the only difference is that it's a slow release tablet to reduce the side effects 
I'm sure Caroline will correct me if I'm wrong 

[Bill]

You are welcome, Mac. I think your dermatologist might just as likely suggest buying the raw chemical from China and meting it out to yourself with drug scales. Psorinovo use seems confined largely to the Netherlands. Anyway, if failing Skilarence means you go onto Stelara, then that could well work out better for you.

Good luck.

[Fred]

I would move onto stelara.. Not overly passionate about needles so hoping it'll be clear by then

Stelara is still one of the best Bio's for psoriasis, and the needles are not a problem once they have shown you how to do it. It's a very small needle and goes just under the skin, pinch an inch on the belly, shove it, and all done in less than a minute. Also added benefit with Stelara, once you have the loading dose it's one shot every 12 weeks.

[Caroline]

I hope you will be clear or at least showing signs of clearing by then. It should work if Fumaderm did as the basic ingredient is the same.

Psorinovo would not be discussed because I believe it is only available in the Netherlands as a prescribed drug, although I'm sure Caroline has said they will export it to other countries and there is no limit to the size of dose like skilarence
But I doubt it would be any different to Skilarence as the only difference is that it's a slow release tablet to reduce the side effects 
I'm sure Caroline will correct me if I'm wrong 

Basically Psorinovo is worldwide available. Just like ordering a car radio in China you can order Psorinovo from the Netherlands.
You only have to start trying it. And is amazes me that nobody tries it, it is twice as cheap as Skilarence. Now I know that the medical profession can be very conservative.
But hey, if Copernicus hadn’t been looking out of his boundaries, we would all still believe that the sun was making its rounds around the Earth. (Sorry Dave, but the earth really is rotating around the sun )
This attitude is not common in the medical world, specially not between countries.

There is a difference between Skilarence and Psorinovo besides the controlled/extended release of the last one. For reasons not clear to me Skilarence contains a number of filler substances, e.g. lactose and other stuff. Psorinovo on the contrary is mixed with a very simple and inert filler substance that gradually falls apart in the intestine. So it is basically only DMF.

[Mac092]

Cheers everyone for your thoughts on the different options!! 

It's almost a month to the day now since my flare up reached peak flare up.. moving onto the max dose with skilarence has improved me face somewhat but no real improvement other than that.. at least I feel less embarrassed in public for the time being ? I've all but accepted it's not gonna work now so I'm looking forward to get back to my derm in  2weeks and hopefully I can start stelera straight away. I've already done the various tests for it! 

Fred, it seemed as though you had experience with stelera? Can you give me any advice on how quickly it can clear up once you started it? And does the one shot actually keep you clear for the whole 12 weeks or do you notice it creeping back towards the end of that period?

Again thank you to everyone for your input, I'll try keep up with my updates on skilarence too ?