Not sure about puva or uvb. I've tried both and doesn't really help in this region. Tends to just irritate it but maybe I didn't give it enough chance.
Cold water theory is interesting and be good to know how you get on.
Sorry you're having such a bad time anyway. It is disappointing there isn't better treatment for this horrible thing we have. The story of systemic drugs is a typical one, hence it doesn't appeal to me. But maybe they're comes a point when it's all you can try.
Perhaps you just need a stronger steroid to get it under control then cruise daily on protopic like me. I would guess your current issue is just psoriasis, not skin thinning. I can only go off my own experience though. So much steroid use down there and no skin damage.
Posted Fri 22 Jan 2021 18.54 by Happychappy
Hi Mario, brief update. The synalar kicked in to damp down the groins. I used eumovate after as per plan. However , didn't agree with my skin and upset it. Couple days more synalar and it improved. Daily protopic keeping it comfy at this point. The anal area not responsive. Plan is elocon 1 week then protopic hopefully. To sum up, groins best they have been for months and hopefully anal will improve. As this has been a year problem, Had skin biopsy to ensure appropriate diagnosis and treatment. Awaiting results.
That's great news, and hopefully gives you faith you'll get the rest under control too. Keep us updated!
Posted Tue 2 Feb 2021 21.43 by Happychappy
Hi Mario, biopsy confirmed psoriasis. Anal area not responded to elecon. Very sore and red. Goodness knows what will work?? Dermatology on thurs. Got an expensive bum!!!! Lost faith at the moment, going on too long.
Posted Sat 27 Feb 2021 18.07 by Happychappy
Hi Mario.....Faith rewarded and we got there . Protopic keeping things happy. Thank goodness I found a brilliant dermatologist . If a flare happens, I'm armed and ready.
Hey Happychappy, curious to know how you managed to get inflamed anal area to calm down before using Protopic? Very pleased to hear things are better now.
Posted Sat 27 Feb 2021 20.06 by Happychappy
Synalar twice a day for 7 days then once a day for groins and anal. It sorted groins but not anal. I was put on elocon once a day for 7 days, that did the trick. Protopic now then review in 3 months. Alls good. I'm aware flares can happen. Then back to synalar/ elocon to calm. I can honestly say I have had a challenging year. Different treatments. My new dermatologist got me sorted. Hope this helps.
Posted Sun 28 Feb 2021 11.54 by AMK
Thanks for the reply Happychappy. Glad it's working for you. Unfortunately Protopic doesn't have any effect for me. Elocon can calm a little but not clear. 3 years in now and all that's really left is biological drugs but very difficult to get these as the area coverage is not large enough percentage wise regardless of serverity of area effected!
Posted Thu 13 May 2021 19.27 by Happychappy
The dreaded flare had to happen and has arrived. Perianal area only. Thank goodness my groins are ok. Synalar and Elecon again. Does anyone know if you can repeat on a cycle if its slow to clear?? I suspect swimming was the trigger. Damn and blast!!
Posted Tue 24 Aug 2021 00.32 by Psysword
Well it was too good to last. Ow a horrible flare. Trying steroids but will switch to elecon tomorrow after 2 days of swollen perianal area. The cold water is not helping now. Hope the night goes by quickly. Walking causes the swelling to be most painful. Feels like an abscess but will get it checked out. Hoping for a resolution tomorrow. Good luck guys. What a life.
Any body had any luck with diets? Carbs seem to be consistently blamed. Any evidence or relief with dieting and exercising? Thanks guys.
Posted Tue 24 Aug 2021 06.12 by Happychappy
Hi psysword, me too with perianal flare thanks to holiday steam Spa. . Last one trimovate worked for a change! This time it hasn't and protopic hasn't. My Dermatologist suggested rotating the steroid creams. I'm convinced this is all the luck of the draw and there is no exact science. I'm giving trimovate another try. Then who knows. Synalar, Eumovate, Dermovate, Elocon. ???? Take your pick. I am trying dead sea salts in Bath.
Posted Thu 26 Aug 2021 15.03 by AMK
I’m starting to believe diet is the key psysword. After having a terrible perian flare up a few months back I decided to get even stricter with my food intake. No alcohol and very little sugar. Really just trying to eat non processed food. Mainly meat (not beef) veggies and fruit. Can be difficult but flare went away within a couple of months and now just using Elocon, eumovate and moisturiser alternatively to keep at bay. No flare for 4 months now. Fingers crossed again!
Posted Thu 26 Aug 2021 15.04 by AMK
Also 2-3 litres of pure water daily.
Posted Wed 1 Sep 2021 16.25 by JOHND
The Skin Slaceation products are all natural and soothing. Developed by some GPs for Durham coal miners originally. https://skinsalve.co.uk/
Posted Tue 14 Sep 2021 15.07 by MMG
Until recently I never knew one could have such an unbearable painful anus ! I have Psoriasis on my arms and legs and managed the problem. Recently my anus became so unbearably sore and I got some ointment like Vaseline from the chemist. I have to wait to see the doctor until Thursday. I wake at night from the pain, exhausted during the day and the pain is chronic. The Psoriasis has also appeared in my arm pits which are swollen. and I feel a right old misery !
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Posted Fri 24 Sep 2021 10.41 by Happychappy
Hi AMK and Mario and Community, how's you?? I'm back on another flare and not happy. Got all the steroid creams. Will have to work out which will help if any!! I worry about steroid withdrawal and overuse. After 18 months of on and off steroid ointments. Here we go again!!! Will it ever get better. Got Elecon, synalar Trimovate, Eumovate, Dermovate and now Lotriderm. Seems rotation is the key???? And protopic. Pharmacy dept I am. All advice as always welcome from a not so happy chappy. Oh, and every time I poop, it upsets me further.
Posted Sat 25 Sep 2021 12.32 by Mario64
Cruising along for me. Protopic once a day or every other day keeping things at bay. My nail is starting to get bad again.
Did you ever try a uvb lamp? About £100 on eBay. I would try working your way up very slowly with that. Start with 10 seconds and add ten every day until you notice one day it feels a bit sun damaged a few hours later. Then stick at that time every day until you feel ready to up it. A medical professional would probably never suggest this because they are too worried about people burning themselves in this area but I think if you're sensible it's a good method and you'll get good results. Up to you.
Don't use protopic at the same time as it causes uv light to burn more easily.
Posted Sat 25 Sep 2021 12.38 by Rich
Hi all
What's protopic please?
Posted Mon 27 Sep 2021 09.43 by AMK
Hi Happychappy. These flare ups we get are very hard to pin point the root cause and we all seem to have different ways of relieving and coping. I'm still using a combination of Elocon, Eumovate and moisturiser but really believe that what we consume has big part to play. Generally I keep away from alcohol, sugar, red meat, potatoes, rice & pasta, and plenty of water. If I'm good it's good, if I'm bad it seems to get worse! I've been doing this for 7 months now with no real flare ups. Who knows if it will last but got to keep trying, good luck all.
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Posted Sat 9 Jan 2021 19.30 by Mario64