About to start Fumaderm

[MrGnomusy]

It feels as though Skilarence was concocted haphazardly without doing proper research as to what makes it work optimally. All to make a small buck in an untapped market... 

[Caroline]

I'm on the same page as arsenalfan13, for me the desired effect have not been reached with Skilarence at all. At least for me it calmed down my P a little bit for a while but now new spots are appealing everywhere. 
I have an appointment with my derm next month. Real shame tho, as I thought it would work out... 
Bio's here we come (I guess) 


Let's hope we both find something that works arsenalfan13? 

Oh dear that's a shame, I'm surprised and disappointed for you as it has been a life changer for me ..can I ask what dose you are on now did you reach 6 tablets a day? ...you did suffer if I remember bad side effect, have they eased now?

I've been on 3x120 twice a day (on the box it says 2x120 three times a day), but I always seem to be forgetting the midday one so I changed it. Also yeah a slow release capsule would be the best by far. I have the odd flush, two to three times a week now, and it's really not that bad. Also, because this Skilarence is available for purchase I think you can't Import other DMF medications anymore unfortunately... 

Why not?
The iPhone is a product that is available, still that gives you the possibility to buy an imported Android or import any other device. Why should this be different with medication?

[jiml]

It’s a shame you can’t get psorinovo in Sweden then you could increase the dose... if Skilarence had based their research on psorinovo then their guidelines would probably be different , instead it seems  they based it on Fumaderm which has additives which are what seems to determine the maximum dose.  but as you say if it’s not working as it should then indeed it’s time to move on to perhaps a biological drug
I wish you good luck at your next appointment next month although maybe it will work by then  

[Caroline]

It feels as though Skilarence was concocted haphazardly without doing proper research as to what makes it work optimally. All to make a small buck in an untapped market... 

That is not completely the case I think. They have seen the necessity to have an extra registered DMF product available wide in the European market, as DMF is quite an interesting product, because it influences the immune system in a very positive way with those people who suffer from at disturbance in that. It works for Psoriasis, Psoriatic Arthritis, Multiple Sclerosis, Crohn's, Lichen Sclerosis even for bed sores and more. A leading dermatologist in the Netherlands, dr. Bing Thio, once said: DMF is the aspirin of the future for a certain type of disease.
Almiral is a small spanish pharmacist. They somehow see the importance of DMF for the population and have thought to contribute on that. In that sense I believe them.
The only thing is: They did not do their homework.
Already for many, many years we know that a slow release version is easier to digest. Why didn't they make that? They appear not to have an explanation for that.

[arsenalfan13]

So I saw my dermatologist yesterday and explained that the Fumaderm hasn't worked. She gave me the options of persisting with the Fumaderm because it's usually only stopped if improvement isn't seen after 6 months or moving on to something else. I told her I would like to consider something else and she tried to offer me acitretin again, which I refused. We spoke about methotrexate and even though she originally ruled that out (something to do with peptides and the liver) she said I was only marginally outside the range needed to be in so we could probably try it if we tested my bloods for it again and everything was fine. Also spoke about Cyclosporine but she said I'd need to speak to someone else as a sort of consultation process. So now I'm waiting another 4 weeks for my next appointment to discuss the possibility of Cyclosporine or Methotrexate, two drugs I don't even fancy anyway. I know 4 weeks isn't a long time in the grand scheme of things but it feels like it, especially with Summer starting to show it's face. The weather is warming up and everyone is excited for it and I'm just dreading another summer covered up. I'm also sick and tired of (over)using steroid creams to control this condition, they really aren't good for you.

So down, miserable and frustrated currently. Becoming a person I don't like. Really had hopes when offered Fumaderm that by about this time I'd have improved skin but unfortunately that's not the case. Starting to think I'm never going to have clear skin again.

[Fred]

So down, miserable and frustrated currently. Becoming a person I don't like. Really had hopes when offered Fumaderm that by about this time I'd have improved skin but unfortunately that's not the case. Starting to think I'm never going to have clear skin again.

I know it's easy to say, but try not to let it get you down. It takes time to find the right treatment for each patient and there is no one suit fits all as far as psoriasis goes.

I got to the point of thinking I would never have clear skin but Stelara did give me clear skin. I also got to the point of thinking I may never be able to live a normal life again because the psoriatic arthritis was taking over, but Cosentx has got rid of the psoriatic arthritis.

Unfortunately Cosentyx isn't working so well for the psoriasis, but I'm happy being rid of psoriatic arthritis and have decided to keep with it for a while longer.

What I'm trying to say is. It's all about management and finding what works for you. I still haven't found a treatment that gives me 100% satisfaction, but getting near is better than putting up with it. (I tried that for many years and it doesn't work)

Don't dislike yourself, it will not help and will only make things worse. Positive attitude and move on to the next stage is the way to go. The next one may work , but if it doesn't there are more treatments to try and many more in the pipeline.

[MrGnomusy]

Yeah, expecting to not have clear skin again is is something that I dread as well. It seems that Skilarence has completely failed in my books to. Real shame, as it seemed like the best option out there, to bad Almirall forgot about the slow release capsules and in their blunder (just like Jim said) compared it to Fumaderm instead of Psorinovo. 
And if this really is the case, maby the droves of people put on this drug not responding favorable to it will make the manufacturer reevaluate... So, I assume that Bio's aren't a topic your Derm has entertained yet. How come you don't want Acitretin, side effects or was it not working well enough for you. Methotrexate on the other hand may be viable if your liver can tolerate it. Mine gave up after nearly a year of that poison tho. 
Maby your Derm thinks you should try more options before you go to the Bio's. I know the hopeless feeling of the imminent summer approaching all to well, knowing that you'll be stuck inside with a deep depression whilst the rest of the world's out bathing, sunning and barbecuing happily laughing in shorts and t-shirts, taking that freedom for granted. Like we used to do before it got rudely stolen from us. Drivers me crazy, thinking about it... It's been like this every year since 2002 for me. Anyways. I really hope you can find some medication to get you through the summer, and perhaps you can get onto Bio's come this autumn. Cheers! 

PS, I'll see my Derm 15th of May, then I'll most likely go over to another Bio, I've already tried Benepali (Saltwater in a EpiPen IMO) didn't work in other words. Best of luck to us all in this limbo life we're living! 

[arsenalfan13]

I refused acitretin because some of the side effects sound nasty and I didn't fancy any of the hairloss. Add to this that I've not read anywhere of cases where acitretin has completely cleared the psoriasis.

MrGnomusy, what treatments have you tried so far?  You've never found anything that has cleared your skin in almost 20 years?

[jiml]

Shame it didn't work for you ...it can be difficult finding a treatment that works and I had hoped the fumaderm  was going to be the one ...sadly not ....but you must not give up there is a treatment that will work for you and hopefully it will be the next one ....as fred says try to stay positive, come back here often and chat in off topic with others who have or are also struggling so understand your predicament ....I suggest whatever they throw at you next give it a try ....
but mention that you are a member of a forum where we chat about medications and tell them of the ones you would rather not try and try to bring biologicals into the conversation saying that you have read of great successes with Stelara and Cosentyx and ask why they are not being considered for you .....tell them it's badly affecting your quality of life and is causing depression worrying about the coming summer ...they do have a duty to consider all aspects of the disease not just the rash...the psychological impact it has on you should also be considered

Sorry I went into rant phase there  

Good luck and try to get your skin out as much as you can in the summer ...I used to find a deserted beach and get my kit off when it was warm enough to try to get clear with the natural uv rays ..combined with steroid creams ..with some success but of course my skin thinned terribly..so although I got some clearance in summer months I paid the price later ...this shouldn't be necessary these days with all the drugs that are available


Also why not sign up for our free monthly newsletter that will keep you up to date with the latest psoriasis news and member threads and will point you to some of the off topic subjects. To join just click Groups and then click on join group

[Bill]

It would be disappointing if you did not have other choices. What you need to do is to make sure that your dermatologist has a treatment path for you to follow. Refusing a treatment is your right, but understand the implications of your refusal: For example, the public system in Australia dictates that you try and fail a set number of defined therapies before you may progress to other therapies. Simply declining a therapy will stop your access to treatment. That is stupid.

As a fellow sufferer you have my full sympathy for your crappy illness, but if you want results you have to take your medicine come hell or high water.

Good luck.