Hi Mario. I have implemented your advice for cleansing and changed underwear. I cannot get face to face with dermatologist now with covid. I was getting no bum improvement with 4/12 months. Trimovate. It did clear my groins, but they have flared up again. Prior to all this I tried Silkis with no joy There are others on this forum whom Trimovate worked for. As you know it's a triple actor. Cortisone, antifungal and antibiotic. I was able to speak to gp by phone who wanted to try daktacort with bactroban. As you know its steroid cream with antibiotic in case of any staph aureus. To try 10 days. My concern is I'm as red underneath as I was 4 months ago. The skin has not improved with steroid as yet. Like you I have researched and there is red skin syndrome from steroids to be cautious with. I am researching. I have suggested protopic and different steroid as you suggested. Don't know if this will stop the redness. He wants me to call back in 8 days to see if any better. I do value your advice. It really is a difficult time.
Posted Wed 18 Nov 2020 20.49 by Mario64
That's a shame things are moving slowly for you. My skin is red and shiny there during a flare up. That's just the nature of flexural psoriasis. I wonder if there's anywhere online you could order these things to bypass the docs? The last consultant I saw wouldn't prescribe Elocon for my scalp, despite the fact this is the only med that gets my scalp under control, I only came into possession of it by chance, as it's what my daughter was prescribed for hers. He prescribed me something else which he said was better, but it is useless.
I've also bought myself a uvb desk lamp off ebay for £115. It is actually working very well on many areas, It is ok to do down there for about a minute at a time, although if you want to try that you should really have the redness under control first with a strong steroid. Also annoyingly you can't use UVB when you've got protopic on it (due to it causing photosensitivity), which I have on half the time.
Posted Sat 26 Dec 2020 17.00 by Mario64
Did the doc give any logic to the eumovate step? I'd imagine you will be clear after two weeks of synalar and ready for protopic but maybe there is some benefit to cruising on a transitional course of eumovate first? Hope this works for you. I'm not sure if I mentioned already but shaving the area makes this all a lot more manageable for me. I tend to get difficult to control flares when there's a fair deal of hair in the way.
Yeah so, I was on a topical steroid which controlled my pain and weeping lesion. Now every morning, I wash thoroughly with cold water, even in winter and I have seen keeping the area free of irritating fecal matter while freezing the area with 9 degree celcius water works wonders. Recently, have become lesion and pain free. hoping to continue this cold water treatment alone. havent touched a steroid in a month. Good Luck folks into the NEW YEAR!
Posted Sat 26 Dec 2020 18.25 by Happychappy
Thanks for replying. Its stepping down process. Iv'e had a tricky 4 week sore flare up. Trimovate not helped. Hopefully can get this under control . Will see at review in 6 weeks. NHS 40 week wait. Has to be private. Good tip on hair!! Need to find seamless boxers .
Again not sure if i mentioned but I buy boxers that are as loose as i can get away with. Those tight ones that wrap around your thighs weirdly make things flare up quickly. So must be an element of heat/circulating air, or lack of, involved in the problem.
The cold water suggestion is interesting although I can't stand cold water and would probably rather keep using warm water and then protopic. I may see if i can muster the bravery to experiment with it. Thanks
Posted Tue 29 Dec 2020 10.23 by Rich
After reading all these posts, it reads like my life in the last ten years.....tried everything natural nothing works for me. A light spray with enstillar is the only thing that worked for me. It cleared my site perenium up in 3days hope this helps
Posted Thu 31 Dec 2020 05.46 by Mario64
Thanks Rich, but what about maintenance? I read this is a strong steroid therefore its use is ideally avoided in genital areas. How often do you use it?
Posted Fri 8 Jan 2021 17.02 by Happychappy
Hi Mario and happy new year. Still struggling a bit. Synalar not made significant difference at this point after 2 weeks. Groins sore and kinda feel chapped if that makes sense and bum still red. Would you use protopic on inflammed areas or wait till things damp down more?
Posted Fri 8 Jan 2021 17.52 by Mario64
Happy new year. Sorry you haven't had much luck. Can't remember if i said but keeping the area hair free is quite important for my own success.
You could try the tiniest amount of protopic possible on an area smaller than a 5p and see what happens. If it doesn't burn after a few hours try a bit more. It is like vaseline so once it's on, it will only go by being naturally rubbed off over the next few days. I guess wiping repeatedly with a damp cloth helps to get rid of it if you really need to.
As they say, pouring cold water over it might just do the trick. Cold water will cause vasoconstriction or reduce your blood vessel size dramatically. Guess what? all those irritating chemicals called cytokines have no way to travel to your affected area. Result. Hyperreactivity goes down. Works for me like a charm. Only thing is it's arse-burning cold.
Posted Fri 8 Jan 2021 21.07 by Happychappy
How quick acting is protopic??
Posted Sat 9 Jan 2021 06.13 by Happychappy
What's frightening me is 6 months of different cortisone ointments is not now working and my groins and perianals are worse. My upperthighs have redness now. My skin feels chapped and sore. Ended up with sudacreme last night. Is there any hope or reassurance. This is really getting me down.
Posted Sat 9 Jan 2021 06.19 by Psysword
@Happy chappy. Sounds like extensive psoriasis. This calls for PUVA plus narrow band B therapy. Ultra violet light. Please consult your dermatologist ASAP. Might just work wonders.
Posted Sat 9 Jan 2021 06.27 by Happychappy
Hi Psysword, I have anal genital psorisis. No plaques. Will UV work in these areas??
Posted Sat 9 Jan 2021 06.38 by Psysword
I mean if nothing is working then a round of PUVA might not be bad. I tried it but it didn't work for me. But if you're running out of options, there's not much to do. Try the cold water too.
Posted Sat 9 Jan 2021 07.02 by Happychappy
Cold water bath coming up . Skin so sore and I suspect steroid damaged. Can it be after 6 months? or is it the psorasis? It's a big downer at the mo. Quite depressing!!!
Hi Mario, I always refer back to your Jan20 post. It's reassuring. 6 months assorted steroids to my groin area. .There at there sorest now. Damaged skin or psoriasis? I really dont know. I'm worried about steroids now.
Hi Happychappy. I too suffer with this horrible disease in the same area (but not the groin). The pain can be horrific some days and it feels like your wearing underwear made of sand paper! I fully appreciate your despair. I still have no happy ending unfortunately but will give you a quick recap on the last 2 1/2 years.
After trying all the creams for 6 months the area got so bad I went private and got put on cyclosporine. It took 4 weeks to work but cleared everything back to normal. It felt like a miracle had happened, ( a costly one to start with until it was transferred to the NHS). This lasted for about 3 months then started to slowly come back. Came off cyclosporine and used Eumovate for 4 months then when it got bad again was put on methotrexate. After 3 months had no joy so started to use a uvb lamp recommended by the doctor. Had a little success after a month or two but never really cleared and then got worse again. I'm now back on cyclosporine (3 months in) but unfortunately it has not had the 'miracle' effect it did the first time round. Having to use Elocon ointment as well to reduce to redness and the itch. I too worry about steroid overuse but just do what I can to get through each day.
Happy to answer any questions and good luck to everyone.
Posted Sat 9 Jan 2021 17.26 by Happychappy
Hi AMK, thanks for sharing your journey. This is a story with no happy ending. I realise its hit and miss. Good days and bad days. Yes underwear is a problem. I'm avoiding seams as they rub and wearing white if possible Mine started 1yr ago. Father had it and I've had it on elbows. Silkis and Assorted steroids. Skin in groin is raw and sore and perianal. Don t know if that is the psoriasis or steroid thinning?? A red patch now on both upper thighs. A worry perhaps or am I being daft? Dermatologist is hoping I can get onto protopic. I know oral tablets are not nice. Hope not to go there. I have review Monday, private is the only way at the moment. Great support and help on this forum. Thank you all.
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Posted Wed 18 Nov 2020 17.44 by Happychappy
Posted Tue 29 Dec 2020 10.23 by Rich