Hi All,
I've just finished a course of uvb treatment, have had 5 courses over the space of 10 years and it completely clears my skin up for around a year until it gradually comes back (I'm covered head to toe).
This time it's back straight away and I'm wondering what new or existing treatments people are using for severe coverage, steroids aren't practical because of how much skin is covered, im reluctant to go on methotrexate so looking for alternatives.
Also are people having a bad flare up just now? I'm SOOO FRIKN ITCHY.
Hi Smitch, feel your pain, I look like the Rock from the marvel comics. I have just ordered a new product from AXIS Biotix so will feed back if it works.
Posted Wed 1 Dec 2021 08.24 by Anoula
I have found aveeno products for the bath soothing, but they are sometimes hard to source. Just a relief from itching.
Posted Thu 2 Dec 2021 21.19 by chiquay I have had psoraisis for 2 years. I am a 52 year old man. It started with a few odd spots on my scalp and has spread to my body.
I was on UVB treatment and it worked - up to a point. Time consuming, so much so that I bought a UVB sunbed, Also time consuming. The only time I have been completely clear is when I In Madagascar , swimming in the sea every day. It cleared up (in the sunshine), but started coming back 3 weeks after my return to Scotland.
I have been put onto "Skilarence" (Fumeric acid esters) and just started the course. Trying earnestly to reduce my alcohol intake. I shall keep the group posted. Not using the sunlamp in tandem as I need to get advice from the dermatology nurse. We shall see. It is according to my mum, a retired nurse, a powerful drug.
Chiquay
Hi Chiqua
I was on skilerence plus Fumerderm before it for well over 20 years and it was miracle for me and I didn't have even a tiny bit of psoriasis in all that time. I took myself off it because of COVID. I had no side effects at all with it after the first few weeks. I'm waiting to get back to my dermatologist to get back on it.
1Posted Thu 2 Dec 2021 23.26 by chiquay I have had psoraisis for 2 years. I am a 52 year old man. It started with a few odd spots on my scalp and has spread to my body.
Have never heard of skilerence??What actually is it?
I have guttate psoriasis and it hads flared up recently. Terrible on my hands.
Any advice on creams or anything would be appreciated.
Thankyou
Posted Fri 10 Dec 2021 04.57 by OhNo_NotAgain? (edited Fri 10 Dec 2021 05.03 by OhNo_NotAgain?)
OhNo has probably answered your question, luckily as I have no idea what it is! I originally took it as Fumerderm way way back before it was even approved by NICE although the Germans had approved it. My dermatologist was on the NICE board and felt it was safe and put me forward for it. While using it, one day as I went to pick it up it was called Skilerence. It worked for me, but he did tell me that some people couldn't bear the side effects - I had none after a couple of weeks and wish I hadn't stopped it, but I panicked when I got a shield letter. Now I cant get back to them.
Posted Mon 13 Dec 2021 13.32 by chiquay (edited Mon 13 Dec 2021 13.36 by chiquay) I have had psoraisis for 2 years. I am a 52 year old man. It started with a few odd spots on my scalp and has spread to my body.
Skilerence is a trade name for "Fumeric Acid Esters". I actually have some knowledge of Chemistry, but "Fumeric Acid Esters" are beyond my pay scale!!! :)
It has reduced my itching , so that is a huge bonus Seems to have reduced the irritation on my scalp too.. It is meant to be a long term treatment and is quite complex in administration. As stated, it is a quite powerful drug (according to my mum, a retired nurse). only given by prescription by a qualified General Practitioner (doctor). I have suffered no noticeable side-effects to date and am just a couple of weeks into the treatment. Small tablets (30mg) initially, being increased gradually.
Thankfully, I live in Scotland and all treatment is free, as are consultations. I am very grateful for that.
As for lotions and potions? In my experience they are a waste of time. Healing comes from within, and not through a "topical" lotion...
Anyhow - thanks for the discussion. "Fumeric Acid Esters"!!! Easy for me to say (and I have a Higher in Chemistry :-) "
Best wishes folks.
Horrid disease, but we get on with our lives as best we can.
God Bless.
1Posted Mon 13 Dec 2021 13.35 by lizziep (edited Mon 13 Dec 2021 13.37 by lizziep)
It was all free for me too in England! Incidentally, it never got to the stage when my GP could administer it - I had to go to the hospital dermatology every 5 months to pick up the tablets and have blood/urine tests.
1Posted Mon 13 Dec 2021 13.39 by chiquay (edited Mon 13 Dec 2021 14.03 by chiquay) I have had psoraisis for 2 years. I am a 52 year old man. It started with a few odd spots on my scalp and has spread to my body.
Lizziep - our NHS is fantastic. I live in the UK, of course - but we have different laws in Scotland - that Is why I made the definition.
Big smiley. :-)
I get "my bloods" taken every few weeks. They are on the case, the NHS. Superheroes.
As for my prescription, it gets delivered to my chemist and I collect it. I live in a rural environment and need to keep on top of my local surgery to ensure everything is going well. These are difficult times and we should all be aware of that.
I shall put things into some perspective. I do voluntary work in Madagascar, frequently. If you are ill in Madagascar there is a good chance you will die rapidly. I take no pleasure in saying that, I only state it because, sometimes, in "The West" we take things for granted. We dunno we are born, to coin a phrase.
A friend in Fort Dauphin, Madagascar (google it) cut his toe. It became septic and I said to him to get some Penicillin to help the healing. "I have no money, my bro..." So , I have no medical training, but I know what Penecillin is and does. I went to the chemist and bought some Amoxycillin. It cost me £1.70. His septic foot was healed in 3 days.
So - what is my point?
Count your blessings.
Not trying to big myself up, and closest time I shall get to feel like a GP (LMAO). But, count our blessings - and our Fumeric Acid Esters.
His name is Elie. We still chat...
Posted Mon 13 Dec 2021 14.55 by OhNo_NotAgain?
The only major difference in Scotland is that all prescriptions are free. I have had a broken clavicle misdiagnosed, and I finally went privately to have it repaired. Removal of plaster on a broken ankle delayed for 2 weeks so that staff did not need to hold a clinic between Christmas and Hogmanay, yet sent a letter falsely saying that I had requested the change of appointment. When in hospital for an operation, blood was spilled on the floor and nurses refused to wipe it up as it was "not their job". Meanwhile I could hear them discussing holidays, shopping wekends, boyfriends and so on, at the Nurses Station, and even arguing over whose turn it was to answer patient call-bells, in some cases ignoring them until 3rd attempt. The blood remained on the floor next to my bed for 6 hours until the shift changed.
I injured my shoulder a few minths ago, and canniot even get to see GP, I had a phone appointment and they refused point blank to see me, or refer me, but told me to "find a physiotherapist privately". I managed to self-refer to a Private hospital and the consultant confirmed a significant injury needing surgery.
The NHS in Scotland is in just as bad a state in terms of delays, waiting lists and medical errors as in England.
Posted Mon 13 Dec 2021 14.58 by chiquay I have had psoraisis for 2 years. I am a 52 year old man. It started with a few odd spots on my scalp and has spread to my body.
Ok.
Posted Fri 17 Dec 2021 09.16 by AdrianaLazar
I have psoriasis so I really need to be careful of what I put on my skin. I wanted a deep night moisturizer to help combat some of my dry skin and Foderma Eczema Treatment has been fantastic. Been using it the last 2 months and my skin is feeling lovely and soft and ive not even had the slightest reaction to the cream so I'm happy
Posted Mon 27 Dec 2021 04.11 by Cross-Bow
I bought some UVB 10 (26W) light bulbs to rig up a small, crude light-therapy box.
1) What is the safe/effective distance the bulbs should be from my skin?
2) Should I line the box with reflective Tinfoil to try focus light - so none escapes?
I know mirrors won't work - UVB doesn't penetrate glass.
Posted Tue 18 Jan 2022 16.27 by Paddy
Has any one suffering terrible red patches down below very itch especially at night driving me mad. My psoriasis is all over. Trying to get even a doctor appointment at the moment is terrible
Posted Fri 28 Jan 2022 17.06 by chiquay I have had psoraisis for 2 years. I am a 52 year old man. It started with a few odd spots on my scalp and has spread to my body.
Cross-Bow - speak with a dermatology nurse at your hospital. He/she will be glad to help. These lamps are extremely powerful and must be treated with extreme caution. I am not trained in it, although I have a clue, due to treatment and advice.
Just phone up the NHS and ask...
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Posted Fri 29 Oct 2021 11.27 by Smitch
Posted Mon 27 Dec 2021 04.11 by Cross-Bow