Posted Tue 1 Aug 2017 12.46 by ClearskinPls Since 2001, tried uvb and creams
Thanks for your advise. I will post soon. My derm told me that you can go onto the vitamin a drug (acer somthing)as a bridge whilst reducing ciclosporin dose.
Not heard that one, Folic Acid is used to reduce side effects of Matraxine, though I want to avoid that. Treatments are improving all the time. I've been discussing an injected treatment with my dermatologist , but that is very new so we'll see. There is advice and support here, or if you just want a good moan, believe me at sometime you will :-)
Annegrey: For 59 years Psoriasis was nothing more than a nusiance. Then I was warned I could of die of a complication Erytrodermia. What food could cure that? Cyclosporin is a very powerful drug, no reputable Dermatologist would perscribe it unless the patient needed it.
Unfortunately I don't believe foods can cure my condition! And my dermatologist is very good at what he does! Different drugs affect different people in different ways. I have read about what foods I can and can't eat but I'm sorry I like the foods I eat. You stick to your ways and leave this forum to deal with theirs.
Giacy, yes if it was that easy none of would here.
Posted Thu 3 Aug 2017 07.49 by Holly1 Has psoriasis since 2001
Last few days I have had a cold last night I felt so rough pounding headache felt achey, lost my voice and throats hurts this morning I feel ever so slightly better the headache isn't as severe and I'm not as achey but symptoms are still there and throat still hurts. Should I be worried having these symptoms whilst on cyclosporin?
Posted Thu 3 Aug 2017 07.54 by DodgeWC51
I asked my doctor for a throat gargle, that helped. If you don't want to go to the doctor, then Liquid TCP, diluted as per instructions, tastes foul but doe sooth the throat. If you have trouble swallowing then go straight to the doctor ofr AE and tell them what you are on.
1Posted Thu 3 Aug 2017 07.57 by Holly1 Has psoriasis since 2001
Clearskinpls I hope using cyclosporine gives you the results you want. From my experience I am so impressed I never thought I would have clear skin again I got to the point where I was so fed up and depressed over the state of my skin and the pain I was in with it. Was dubious about taking the drugs as I heard about some side affects but I'm so glad I did it been on these since end of march and it does take a good few weeks to notice a few changes but I'm 99% clear now!! Il be coming off these next month and by then it should be completely gone. It has totally changed my life sounds extreme to say but it really has! This forum has been fantastic with answering my questions and just hearing from people in the same situation is so helpful. Good luck :)
Posted Thu 3 Aug 2017 08.04 by DodgeWC51
When you come off it will flare, but at least for me the return is at a level I can live with quite happily. It will be a couple of months before any follow up is decided, so I'm at decsion time. Do I continue with another treatment, or return to the staus quo, where I have some plaques but not enough to worry.
Posted Thu 3 Aug 2017 08.11 by Holly1 Has psoriasis since 2001
Thank you for that thats interesting but like you say hopefully it will be at a manageable level that I can try to controll. It's so nice having clear skin though so I can understand that decision being hard.
Thank you for the advice with the sore throats I will buy this. So far I'm able to swollow fine but if that changes I will go a&e appreciate your help :)
Posted Thu 3 Aug 2017 08.13 by DodgeWC51
That's what the forum is for :-)
Posted Wed 9 Aug 2017 12.03 by ClearskinPls Since 2001, tried uvb and creams
One week in with Ciclosporin and good results. .skin is beginning to fade and any white scaly stuff is gone so no more skin trails. Dodge's recommendation of Baby Lotion is a great tip . Its easy non greasy and smells great....I smell like a fifty year old baby but im cool with that.
As for side affects occasional cold feet whilst sleeping...so , so far so good...I think feeding your body with good healthy food helps the body with Ciclosporin's change affect on body
Posted Wed 9 Aug 2017 12.17 by ClearskinPls Since 2001, tried uvb and creams
Can I ask you how its going with you? Now your off ciclosporin or coming off it what are your next options? You said your results have greatly improved
Posted Wed 9 Aug 2017 12.43 by DodgeWC51
Some scale coming back at the base of the spine, otherwise, nothing visible. . Though I am, a bit fed up. The Erythrodermia was bad enough that I've been off work about 6 months over the year, and every time I was it's poured down with rain ! Good news, changed job to something I enjoy and a lot less stress, so that probably has helped. On full dose the skin was totally clear, that gives the time to allow the body to heal, so now coming off my skin seems to be back in equilibrium. With how it is now there are no practical problem so I hope to go to back to , I don't bother it, it don't bother me. Though for me Psorasis has been there since childhood at some level, so I'm used to it. I have to say at my last job I had a very good manager, who supported me through the whole episode. That helped a lot.
Posted Wed 9 Aug 2017 12.52 by ClearskinPls Since 2001, tried uvb and creams
That sounds positive and practical
We all know that it can creep back but I agree a work balance helps..I too have had to reduce my working pattern. And work stress is definitely a factor. Im glad you have found a more enjoyable vocation. If you can avoid any itching and scratching that inflames the skin. You may keep it at bay....so good luck!
Posted Wed 9 Aug 2017 13.20 by DodgeWC51
Touch wood, no itching ! This whole episode did make me think and re-evaluate things, as the old saying goes,'No pockets in a shroud'. The important thing is get it back under control
I've always been careful about things like, what material clothing has been made of, what detergents I use to wash them, and things like soaps etc. Though clothing wise that's mostly because I worked outside with horses, and agriculture so looked for kit that would protect me in all conditions, never Denim by the way, horrible stuff, hard, heavy when wet retains no heat when wet, difficult to dry, but that's personal. Best things I've found for next to the skin, pure soft cotton, silk, very effective but expensive and Pure Merino , note must be Merino, wool. Again expensive, but hard wearing easy to clean and long lasting so worth it in the end. The unique part about Merino wool AKA The Golden Fleece' is that the staple, which is the fineness of each thread, is smaller than 30 microns, so actually fits bettween the nerves of the skin, and you don't feel it.
Posted Wed 9 Aug 2017 13.31 by ClearskinPls Since 2001, tried uvb and creams
Your tips and advice are very appreciated I think your right ; clothing on skin is a big factor ..have you found an ideal non bio for clothes? I use non bio, but as with your clothes idea , any material especially what it is washed with is definitely a consideration
Posted Wed 9 Aug 2017 13.48 by DodgeWC51
For anything that is delicate or expensive I tend to Favour a company call Nikwax. they do a range of cleaners and treatments for outdoor kit. For standard laundry, Liquids, less residue than powders, which can cause irritation, non bio. Fairy Non bio is my usual standby. Another oddity, bio detergents tend to upset the eco systems of sewage treatment plants. If you live in the wilds with a septic tank or small scale treatment unit not a good idea.
There is a little nemonic for clothing To stay comfortable think COLD, Clean, Overdressing to be avoided, you sweat, Loose and Dry. As for feet., especially coming into the Autumn and winter , invest in a pair of Sealskinz or similar Gortex or Sympatec breathable socks. They work well in summer to as your feet sweat, the vapour can pass through the EPTFE breathable layer, but when it condense to water the drops are to big to get back, so feet always dry and comfortable. In winter thye are totally waterproof from outside, so your feet stay warm and dry. Wicking type materials also work well, but will allow water back. The Gortex are very good if you wear wellies as if your feet sweat the water stays inside and will get cold so your feet freeze. A Scottish friend of mine did once suggest I try the traditional Scot's answer to cold wellies. Stuff boots with fresh cow muck and straw. I declined graciously.
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Posted Tue 1 Aug 2017 12.46 by ClearskinPls