Amazing stuff isn't it? Almost like a magic trick, now you see , now you don't. Glad to here it is working for you. I'm just starting to come on to full dose of Methotrexate this week. I was expecting naseau etc, so far I just feel hungry all the time! Good news is losing weight though.
Posted Sat 9 Dec 2017 12.51 by Idy Phototherapy, methotrexate, ciclosporin and stelara afficionado
Argh. A couple of days after my post of 3 December, the 'spikes' covering my back and sides started to form into plaques and get quite sore and uncomfortable again. A bit disheartening as I'm now getting towards the end of week 6 on Ciclosporin...
Posted Wed 13 Dec 2017 09.05 by DodgeWC51
Bad news. Keep with it, best of luck.
Posted Thu 14 Dec 2017 15.21 by Elsa81
Hi All,
I am new to this forum, I’ve been prescribed Ciclosporin. I haven’t starting taking it yet as I am really concerned about side effects, specifically excessive hair growth!!! Feel like I would be swapping one thing for another. I have recently become a mum & definitely don’t have time to maintain a beard haha!
Gutted as throughout my pregnancy I looked like I did 10 years ago before first onset of psoriasis! Then bam after birth back to big ol flare up!
Any advice or information appreciated...no topically treatments work for me anymore.
Cheers,
E
Posted Thu 14 Dec 2017 18.21 by DodgeWC51
First congratulations on becoming a Mum. On the matter of side effects, yes, read the list, very daunting! I've been taking it for over a year, then a couple of months back, tried to come off it. Didn't work in a very big way! I'm now on it and just starting Metatraxate, hopefully going on to the Biological Metatraxate, the injection. It isn't an instant cure it will take a month to six weeks to have a real effect. Mostly the side effects are a sore throat , bit of tingling in mouth, sometime muscle cramp. Annoying but not a major problem. Everyone is diffrent so keep close contact with your Dermatologist.
Posted Thu 14 Dec 2017 18.58 by Holly1 Has psoriasis since 2001
Hi elsa81 i was good through my first pregnancy complete clear skin but my recent pregnancy I flared up so bad didn't use anything as I didn't want to whilst pregnant so as soon as I could I started ciclosporin. I can't say Iv noticed any extra hair growth as this also worried me. I had tingly fingers when tempterature changes but after a month that stopped I also suffered with sore throats but that was about it and it completely cleared me up! Iv been off it for 3 months and I had a few patches to begin with but it's started to get worse again. Next apppintment isn't until march so we'll see. Everyone has different side affects but hopefully you will be ok. Good luck with it and let us know how you get on and congratulations on becoming a mummy ☺️
Posted Fri 15 Dec 2017 04.19 by DodgeWC51
I find the best way to deal with the sore throat is either to gargale salt water or very dilute TCP liquid.. General winter tip, mittens are better at keeping your hands warm tha gloves anyway, but invest in a pair of thing ski glove silk liners.
Posted Fri 15 Dec 2017 07.08 by Kier1993 24, always lived a happy healthy life until my PPP diagnosis. Now I feel so alone & desperate to find some relief. My depression is horrible
gf.me/u/fm972s Please share. I am a single mother. I never knew PPP existed until I was diagnosed. I am so desperate of some advice & help with medical treatment.
Posted Fri 15 Dec 2017 17.37 by DodgeWC51
Welcome in, first your not alone. Look upon it as an exclusive club, My Mother had Pssorasis all her life, so have I. Treatments now are light years from what was available even ten years ago. No miracle cure I'm afraid, but things can be controlled. Biggest intiail hurdle is the cosmetic effects, there is always some smart alex! But it's their problem not your's, At least here you can moan to people to understand the problems.
Posted Sat 16 Dec 2017 21.38 by Ausum
Hello 🖐🖐. I am considering starting Ciclosporin. I have tried other meds including Methotrexate, Acetretin and Apremilast all of which made no difference other than side effects. So after reading your posts I am feeling quite hopeful. Have had bloods and chest xray done so just waiting for follow up appoint with Dermatologist probably beginning of next year. I suppose its worth a go anyway. Nothing ventured nothing gained. I look forward to reading more of your helpful posts and I will let you know how it goes.
Posted Sat 16 Dec 2017 22.20 by Oread Therapeutics We are trying our best to improve lives through science!
As you alluded to, the medication is one of the most powerful with a number of possible rare side effects but at the same time works rapidly. Just make sure you get all your lab work done, monitor yourself for side effects if you start to feel sick tell your derm, and always tell another doctor you are on the drug if they try to prescribe you something else because there are a bunch of interactions. Good luck!!!
Posted Thu 21 Dec 2017 09.39 by Joe woods
Hi all, new to this I have had psoriasis on the soles of my feet and palms of my hands for four years now I have had many treatments for this from Methatraxate, puva lights and two courses of Ciclosporin, none have worked my last course of Ciclosporin ended this week I was having really bad experience on it such as feeling like my body had swollen up and stomach pains were very bad. I put up with it for four weeks as my feet are very bad with hacks and finding it very difficult to walk around feeling like I am walking around with broken glass in my shoes, my hands also so sore and again looks like my hands have been sliced with a Stanley knife. I get depressed about this my self esteem is rock bottom.
Sorry to hear that, must be really depressing . As a suggestion try contacting a oompany called Altberg. http://www.altberg.co.uk/ their history is with the British Army, over the years they have developed unequal skills in helping people with injuries and ailments that make walking difficult. No, I 'm not a shareholder, just that I know someone injured badly in line of duty who uses their products, she can now walk freely. As for treatment, have you asked about biologicals? This is an injected form of Methatraxate. I've been told I'm eligible and hope to start it soon.
Posted Thu 21 Dec 2017 22.58 by Holly1 Has psoriasis since 2001
When does your immune system go back to normal after being on ciclosporin? Been ill since coming off it and my throat is so sore. Just wondering if it took a while or whether it reverts back quite soon
Thanks Claire
Posted Fri 22 Dec 2017 09.19 by Joe woods
DodgeWC51 thanks for your reply I will contact them today and see how I get on I have tried all the usual soft in soals etc nothing takes the pain away but thanks for your help, I had Methatraxate in injection form and again never seamed to have any impact. At my last visit to dermatologist on Wednesday morning they have basically said they have ran out of options so just waiting for a new appointment to see a “super specialist” hope they can help
Posted Fri 22 Dec 2017 21.17 by DodgeWC51
Pleasure mate. Hope they can come up with something.
Posted Thu 4 Jan 2018 13.43 by JoeOH
Hi everyone,
This is my first post on this page, it's great to see so many people discussing things like this.
I'm rougly two weeks into taking Ciclosporin and as yet no side effects or improvements. My derm was pleased with my blood results, blood pressure etc so i have been upped to 150mg twice per day for the next four weeks.
I'm going away on a family holiday at the end of February so I have that in my sights and hopefully by then there will be an improvement.
Some advice that may be useful for some of you is that I have been going for salt water baths a few times per week using Westlab Dead Sea Salt and it has kept my skin flake free. Hopefully a combination of this and the Ciclosporin will result in me being clear come the end of February!
Thanks
Posted Thu 4 Jan 2018 17.36 by DodgeWC51
Welcome in. It takes a month or so for results to show, so you should have some improvement by end of February. One important factor! If you're going anywhere the sun shines, invest in some UV protective clothing. Easier than slopping lotions on all the time, especially if your skin is sensitive, which it will be. One common side effect is a permenatly irritated throat. Personaly I've found gargling with diluted Liquid TCP to be the best answer, but ask your doctor for a medicted gargle to take with you , and some throat lozenges. I'd also carry some sort of card stating your on Cyclosporin, and any other medication in case of accident. Not to rain on your parade , but your immune system will be depressed, so it wise to take more than normal precautions for hygine.
Posted Thu 4 Jan 2018 19.56 by Elsa81
Hi All,
Thanks for earlier advice, I’ve been on Ciclosporin now for about 3 weeks.
As noted by others I’ve had some tingly sensations in my hands & have had a sore throat on and off! Feel like I am getting a serious cold now though. Thinking of getting the flu jab!
There has been a marked improvement with my skin, which is awesome. Raised flaky patches are gone, some residual redness there but that is also starting to clear.
Have a derm appointment early next week to check progress.
Posted Sun 3 Dec 2017 14.44 by DodgeWC51
Posted Fri 15 Dec 2017 07.08 by Kier1993