(Tue-27-02-2018, 20:49 PM)arsenalfan13 Wrote: Been on maximum dose for a couple days now and I'm astonished to say I've reached it without any side effects at all. I certainly did not expect that. Still no improvement to my skin as of yet but I remain hopeful that I'll see change soon.

Basically you can go higher with Skilarence. As it lacks the MEF, which is the limiting factor in Fumaderm.
Lots of people in the Netherlands need 8 x 120 of Psorinovo before it starts working, after that they can go down again.
But for now, just wait. It may take a bit longer before it starts working. Don’t give up too easily.

(Tue-27-02-2018, 21:23 PM)Caroline Wrote:

(Tue-27-02-2018, 20:49 PM)arsenalfan13 Wrote: Been on maximum dose for a couple days now and I'm astonished to say I've reached it without any side effects at all. I certainly did not expect that. Still no improvement to my skin as of yet but I remain hopeful that I'll see change soon.

Basically you can go higher with Skilarence. As it lacks the MEF, which is the limiting factor in Fumaderm.
Lots of people in the Netherlands need 8 x 120 of Psorinovo before it starts working, after that they can go down again.
But for now, just wait. It may take a bit longer before it starts working. Don’t give up too easily.

Caroline They will not prescribe higher dose Skilarence as the manufacturer has followed the dosing regime of Fumaderm with maximum 6x120mg a day

I agree it's wise to wait a while longer before giving up

I would want to have seen results by now were it me. As Jim said you cannot go on a higher dosage. Are you using topical treatment as well? I found that topical treatments started working again when I started taking the drug.

Personally I would be asking for something else.

Cheers

Not sure where I'd go from here if this medication isn't going to work. I really don't want to try acitretin as I haven't heard good things about it (both in terms of side effects and how well it actually works), was told I wasn't suitable for methotrexate (again not sure I would want to take it anyway) and Cyclosporin seems completely pointless from everything I've read about it - works well on psoriasis but starts to damage your liver etc after a short time and has to be stopped. I mean are there any cases of someone being on this drug long term?

What options are left? I know there is the next step up to the biologics and injections but don't you have to have tried and failed on atleast 2 or 3 of the previously mentioned options first before you'll even be considered?

And yes I'm using Enstilar in conjunction with the skilarence. I don't use it every day because I've already used the stuff far far too much than is recommended but once every 2-4 days I'll apply it.

I would say give it a month on full dose and see if there’s any improvement . If not then I would start looking at your options... if they have ruled methotrexate out as you’re not suitable for it that should count as a failure in my book ... but if they insist on another ask for apremilast (otezla ) although the side effects listed for that look a bit scary ... whatever they throw at you I say give it a go. Most side effects or damage repairs itself if you stop the treatment .... and it’s another box ticked and closer to a biological drug

I’m still hopeful that Skilarence will work for you ... but it’s good to have a plan b

Thank you Jim. I'll stay positive and give it a few more weeks yet before anything else.

(Tue-27-02-2018, 21:58 PM)jiml Wrote: Caroline They will not prescribe higher dose Skilarence as the manufacturer has followed the dosing regime of Fumaderm with  maximum 6x120mg a day

I agree it's wise to wait a while longer before giving up  

I know jim, of course.
But I don’t understand it, as it does not make sense. It shows that Almirall did its research not good enough. They could have seen that Psorinovo could go much higher, certainly because they were advised by a Dutch derm.

(Wed-28-02-2018, 16:16 PM)arsenalfan13 Wrote: Thank you Jim. I'll stay positive and give it a few more weeks yet before anything else.

That is indeed my advice, do not give up too fast, it may be very well possible that in fact you need a higher dose to have it working, so it may take more time than one might feel as normal, but still can work. If in a few more weeks still nothing changes then you can always quit. As long as your blood values are ok, DMF is quite harmless.

When 3*240mg a day stopped working (and it worked well for me for ~6 months) I could vary the dose and ultimately make my DMF far more effective. There is no provision to increase the dose under the NICE guidelines, so what further option is there?

Requesting another treatment will inevitably mean a delay, so there is no reason why Fumaderm could not be taken while waiting, so if it miraculously starts working then great.

I would sooner take mtx than use a topical steroid. Calcipotriol has marginally more appeal for me. The best way to use a topical is to follow these two guidelines:

a) Choose a topical that can effectively control you p without poisoning you or ruining your skin.

b) Use your chosen topical in the most effective manner.

Just thought I'd pop in with an update. Been on maximum dose for a couple weeks now and still no improvement. My psoriasis is worse if anything with a couple new spots appearing.

So yeah it's not looking good. I'll continue to take them until I see my dermatologist next as the tablets aren't causing me any bother whatsoever side effect wise, and I guess there is still a chance they may start to work. I'm just at the point now where I'm hoping (but not really believing) but not expecting.