Lizziep oh wow good to know! The derm always told me that it was some kind of modulator, a bit less invasive than biologics!
I'm so curious about being on skilarence for so long, can I ask you a couple of questions about long term use?
PrincessDi I'm also not from the UK, I'm italian but I haven't found any other forums like this one so I joined it! It's so nice to be able to share experiences with other people.
I'm also from a very sunny place in the south so that's good for vitamin D intake :) but I also kinda feel ashamed, especially because of the discolouration that psoriasis left on my legs
1Posted Thu 25 May 2023 15.59 by lizziep (edited Thu 25 May 2023 16.02 by lizziep)
Hi BennieT - I started on Fumaderm around 20 years ago - during the time I was taking it it changed it's name to skilirence- I worked up to the max dose - cant remember the amount - and then weaned myself back down to 2 a day. When COVID hit and I got a letter from the hospital pharmacy saying I was vulnerable and shoudlnt go out for 12 weeks, I panicked and came off them for a year - entirely my decision - the consultant said he thought the pharmacy was over re acting - after 12 months I remembered how awful psoriasis is and tried to get back to the hospital - that took 15 months and they put me back on the 2 a day dosage and I am virtually clear again - I was totally clear before - but I have so little now I am happy on the 2 a day and am settling for that - I have 3 month blood tests. it is a miracle!
Posted Thu 25 May 2023 16.35 by BennieT
I'm so sorry about that, I'm sure I would have panicked too. Because of psoriasis I had some kind of priority to get the covid vaccine so that was a relief, I wonder if it was the same where you live. It's really good to hear it's still working for you! Do you still get side effects?
By 2 per day do you mean 2x30 mg or 2x120mg?
Hi BennieT - I'm old so I get priority anyway, but I also get it for being on an immune suppressant so all in all I'm well vaccinated! Actually a bonus of coming off it for 2 years was I was able to get the shingles jab which is not for people on immunosuppressants. 1 take 2 x 120 mgs. I don't get any side effects.
1Posted Thu 25 May 2023 17.21 by PrincessDi (edited Thu 25 May 2023 17.22 by PrincessDi)
Being old has it's advantages sometimes!! This site has given me a lot of different ideas and it's aways nice to chat back and forth.
Posted Sat 27 May 2023 20.33 by Itchy
What works better than anything i have found, is using a regular, styling comb, and comb at least 100 times. Like the old school books used to say. Also, i need to wash my hair all the time, because i am not itchy for at least 2 hours after wards. And! If i can keep my hands off my scalp! It was the worst winter, ever, for my scalp. I’ve had this for about 20 years, and every winter, i would try new things. Good luck!
Posted Tue 30 May 2023 06.27 by overitx1000
Oh wow itchy.. 20 years and combing is still the best. We all suffer so much for so long. I would love to hear an actual story of someone who got rid of it for good.. but it doesn't seem like it's a thing.
Posted Tue 30 May 2023 16.05 by PrincessDi
I have found shampoo with salicylic acid help the one I use is Dermarest also shampoos with tea tree seem to soothe
Posted Mon 5 Jun 2023 16.57 by Yacht
Academic studies tend to show Skilarence only has about a 37% success rate at 75% clearance for psoriasis. That is really quite a poor result. Especially for what is quite a harsh chemical that won't help the gut biome. It's not something I'd try.
Posted Mon 5 Jun 2023 17.02 by lizziep (edited Mon 5 Jun 2023 17.16 by lizziep)
I must be lucky then as I had 100% clearance for 20 years and now have 95% clearance without going beyond the lowest dose - no side effects at all. it was a miracle to me when I started as it was before biologics and I am still really happy with it. The consultant did tell me when I came off it for COVID that it might not be so successful when I went back on it and I might have to change, but I am happy with the 95% as it doesn't interfere with my life at all, so as it works for me, there seems no point in trying anything else.
Posted Tue 6 Jun 2023 09.37 by lizziep (edited Tue 6 Jun 2023 09.38 by lizziep)
Hi Yacht - as it is only available on prescription, it will be down to dermatologists - when I started on Fumaderm all those years ago, there was very little choice - now in my late 70s and having tried psoriasis again over COVID, I'm happy where I am!
When you're happy where you're at don't push your luck
Posted Wed 7 Jun 2023 08.12 by overitx1000
Has anyone ever tried to stop their prescription treatments - or have you all just stayed on them for lengthy amounts of time?
E.g. Stopped bothering with the derm, switched from topicals to trying natural or supermarket brand shampoos (coal tar etc.) only? I feel like if I just get it out in the shower maybe I will have some relief from scales galore around the house, on my clothes, slimey head making me depressed from creams..
I just feel that everything I have ever done for 10 years has been completely pointless as I still have to spend every single day removing the scales no matter what I do! (Enstillar, UVB comb, natural, weaker steroids, diet).
Still not feeling like I want to go on any immune suppressants/biologics etc due to my age and wanting to potentially get pregnant in the new year. :(
Posted Wed 7 Jun 2023 08.42 by overitx1000
Also.. has anyone ever tried to go in one of those "float tanks" for psoriasis? Or Cryotherapy?
Posted Wed 7 Jun 2023 14.55 by ScottyT Late onset of scalp Psoriasis
I have had Scalp psoriasis for about three years (I'm 84)
Seen by consultant and tried various treatments, some which seemed to work for a short time but now my scalp seems to be all scabby and sore, also bleeding due to my continuous scratching.
Any suggestions would be greatly appreciated as I'm so tired of it.
Try a shampoo with salicylic acid I use dermarest which definitely seems to help and try to stop scratching makes it worse.
Posted Wed 7 Jun 2023 15.59 by ScottyT Late onset of scalp Psoriasis
Boy do I try not to scratch but it wakes me up :( I'm using coaltar shampoo at the moment as all the other topicals don't work,
Not being able to wear dark clothes is adding to my misery.
Thanks for the reply.
Posted Fri 9 Jun 2023 02.36 by overitx1000
I agree about the clothes.. or being worried constantly that you're covered in flakes.. definitely a misery :(
Posted Fri 9 Jun 2023 02.40 by PrincessDi
I've heard that mixing baking soda with water and massaging into the scalp will help with the flaking, then just rinse? I'm on glow in the dark meds so it's been a long time but believe me I have been there
We use cookies to help us provide you with a better service, but do not track anything that can be used to personally identify you.
If you prefer us not to set these cookies, please visit our Cookie Settings page or continue browsing our site to accept them.
Close
Posted Thu 25 May 2023 15.51 by BennieT