I found two things that helped with itchyness, one was the 50/50 paraffin ointment,, though if it rains you leave an oil slick behind. The other is one of those 'Gipsy' remedies. Get some cheap porridge oats, cheapest you can as they are least refined. Put a couple of generous handfuls into a pice of white cloth or an old flannel and put into the bath water . When you squeeze the cloth a creamy liquid will appear, just rub in on and soack. I never use soap but always a baby wash, again supermarket 's own works OK. Shampoo is similar, most shampoos are far more concentrated than you need anyway. Get a cheap shampoo and dilute it 4 to 1 before use, then buy a bottle of Tea Tree oil and ad a couple of drops to every litre of the diluted shampoo and use that. Cleans hair perfectly well, and saves money. By the time of your post, I'd guess your sleep patterns are all over the place. That I'm afraid can also happen, and is probably one of the most dibiatating things..
One problem is to get people to take the matter seriously, even I who have had P all my life was cavalier until the Company Doctor said quite bluntly 'You know you can die of this'? That brought me and my employers up very short. The Cyclosporin will need a month to 6 weeks to really kick in, but it is worth it the end. These are the bad parts, but the positive is it will better. Follow the Dermatologists advice,but you do have the right to feel fed up and frustrated. Don't apologise for it.
Posted Mon 24 Jul 2017 16.37 by Jamie
Anyone had a cold while on ciclosporin? I've only been taking it a week but caught a cold and really suffering?
Posted Mon 24 Jul 2017 17.17 by DodgeWC51
Actual cold or sore throat? The throat seems to be a constant I'm afraid. If it is a sneezing type cold, see your Doctor. You may need propohlactic antibiotics/
Posted Mon 24 Jul 2017 17.42 by Jamie
Both. Thanks for the advice I will book an appointment tomorrow
Posted Mon 24 Jul 2017 17.57 by DodgeWC51
If you have any trouble swallowing, the advice I was given was straight to A&E and inform them your on Cyclosporin which is a low rate refferal IE Strightaway seen.
Posted Mon 24 Jul 2017 18.12 by Holly1 Has psoriasis since 2001
Dodgewc51 that's good to know about going a&e for that I didn't know. I have had a few colds and sore throat on and off but didn't seem worse than I have had before so I let it ride it's course pharmasist said to take paracetamol which helped a tad but I was ok. Hope you feel better soon!
Posted Mon 24 Jul 2017 18.18 by DodgeWC51
Pleasure, we an exclusive club you know! Got to help and advise each other :-)
Posted Mon 24 Jul 2017 18.35 by Jamie
Thanks for the advice. Are there anymore useful tips for looking aftet myself anybody can share?
Posted Mon 24 Jul 2017 18.47 by DodgeWC51
Drink plenty, it can make you feel de hydrated, and it helps the kidneys as well . One oddity that caught me during the recent exceptionally hot weather, the side effects of Cyclosporin, the tingling in lips and fingers and the odd muscle ache, can mimic signs of a heart attack, I ended up in Guys overnight being monitored, no problems in the end, but not a good way to spend the evening. Use a baby wash , rather than soap, and add a bath foam, I use the cheap Tesco's stuff works fine. Avoid Bio washing detergents. Cyclosporin is not something dished out willy nilly, and the effects can make you feel is it worth it at times. Yes it is! May take a month or so before you see effects, but it does work. New treatments are coming along all the time, I've been offered an injected treatment once a month , so we'll see if that works.
Posted Mon 24 Jul 2017 18.52 by Jamie
Thank you for the useful tips and I hope the injections work well for you.
Posted Thu 27 Jul 2017 18.24 by Jamie
One week into my course of Ciclosporin and for the last couple of days have been extremely itchy after a shower. Is this normal?
Posted Thu 27 Jul 2017 18.55 by DodgeWC51
One week in the stuff should be starting to have an effect. It is a long term treatment, that's the drawback. One thing the skin does do, which most don't appreciate, is help control body tempreture. I spent most of the winter bloody freezing and the early part of the summer (Ha!) boiling, just can't win. Your skin will be sensitive for a couple of weeks, bear in mind your body is fighting itself at the moment so all sorts of weird things can happen. Try using a baby type wash, never soap, that's bad for skin anyway. As soon as you have showered slap on an emolient, I was given 50/50 paraffin that will sooth it down. As you settle into the routine it will improve. Have you started noticing tingling lips yet? That's quite common, especially with hot drinks. Keep with it , it is worth it. I've had Psorasis alll my life, my Mother had so no big deal, just is. Till after 59 years and 8 months, Erythrodermia, and a very nice Doctor saying 'You know you can die of this? ***********!!
Take the condition seriously. I'm not being a gloom and doom merchant, but one problem is convincing others, yes you are ill, seriously.
Posted Thu 27 Jul 2017 19.22 by Jamie
I've been getting tingling in my fingers, especially when I lie down. I have got Dermol 500 which I have been using as a soap but I can also use it to mousturise so will start slapping it on when I get out of the shower. I have read on the internet that it can be life threatening. I have psoriasis in all the high impact areas, the worst of which being ALL of my backside area, and have spent the last few years in quite a bit of pain so am willing to go through any and all side effects to get this cleared up.
At least you know you're not alone. Try some of the 50/50 parrafin if you can get hold of it. Horrible stuff gloppy and get everywhere but it's effective. One drawback, the only medicine I know that comes with a Stay away from naked flame' warning. so no toasting the bum by an open fire. :-) I found ordinary cheap Tesco baby wash/shampoo was the best stuff to use, The water where I live is so hard you can eat it so not the best to wash in anyway. I ended up looking like a bright red Michieln Man, and was walking about laying trails of white dust behind me, embarrasing and unpleasent. I found the side effects more annoying than anything else. Give it another week or two and things should stabilise. Do drink plenty, keep the kidneys well flushed, that is important.
Posted Thu 27 Jul 2017 19.38 by Jamie
Thank you for the advice
Posted Thu 27 Jul 2017 19.40 by DodgeWC51
Any time mate.
Posted Tue 1 Aug 2017 12.15 by ClearskinPls Since 2001, tried uvb and creams
Starting Ciclosporin today..have high hopes from all the reviews. The results reported of total clear up of skin is great news
Posted Tue 1 Aug 2017 12.20 by DodgeWC51
Don't expect overnight results. Give it three of four weeks and you will amazed.
Posted Tue 1 Aug 2017 12.33 by ClearskinPls Since 2001, tried uvb and creams
Thanks! Have you been on this drug long?
Posted Tue 1 Aug 2017 12.42 by DodgeWC51
Just coming of it actually. Started last December , that was with 100% Erythroderma. , so by the time I finish it will be about 10 months. The dosage is worked according to your weight, so everyone is different. The dose will build up but then needs to be slowly brought down till you reach a maintience dose or change treatment. Worth keeping a note with you of the drugs your on and the dosage in case of emergency. Timing of dose is important in the first few weeks at least, Just follow medical advice.
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 Wed 5 Jul 2017 08.15 by DodgeWC51