Things are looking better, no real pain in my body and whilst I still look terrible, definite improvements are occuring and this has given me a world of confidence that I might overcome this red skin syndrome.
Western dependancy on cortisone cream has really frustrated me now I know the affects of long term use, but you can't complain. You've got to always play the hand you are dealt or as the Month Python boys would say "Forget about your sin, give the audience a grin, enjoy it, it's your last chance of the hour'.
Always look on the bright side of life.
Western dependancy on cortisone cream has really frustrated me now I know the affects of long term use, but you can't complain. You've got to always play the hand you are dealt or as the Month Python boys would say "Forget about your sin, give the audience a grin, enjoy it, it's your last chance of the hour'.
Always look on the bright side of life.
Hiya Josh,
ReplyDeleteGreetings from the UK. We are the same same age and I recently went through the exact same thing. I was flaming red from head to toe, and 100% of my body was cracked, itchy, flaking, weeping, painful and swollen. My feet would swell up so much that I couldn't stand up. I spent the bulk of two months off work, unable to leave the house as I couldn't really wear clothes for very long and dried out very quickly outside. I too was convinced that I had red skin syndrome. The only difference was that I didn't go through periods of relief followed by periods of flaring. I was always 100% inflamed and active. Some days would seem slightly better but then the next would be even worse. I was sweeping up multiple dustpans of skin every day and had to change my bedsheets almost daily.
It got to a point where I could no longer physically cope. As you say, staying in the house gets old very quickly. I was also feeling cold and unwell due to the inflammation and simply could not go on. I got an emergency appointment with a dermatologist and was willing to do anything for some relief. They have put me on oral steroids for 6 weeks to calm my skin down. I will then be going on immunosuppressants for 3-6 months. The theory is that after 3-6 months your immune system will have calmed down, and will no longer be hypersensitive and hyper reactive.
My skin cleared up remarkably quickly once I started the meds. The dosage of steroids is being tapered down every week and ill switch to the immunosuppressants soon. I am not happy about being on these nasty drugs, but at the same time it's just marvellous having my life back. I am going to try this approach and hope for the best, because I can't physically or emotionally wait for up to 3 years for this condition to clear up on its own. I will let you know how it goes.
If you decide to continue without any treatment, there are a few things that I found helped me quite substantially when my skin was bad. Firstly, 50-Emollient is an ultra cheap, ultra greasy moisturiser that I got from the dermatologists. It's only ingredients are 50% w/w Liquid Paraffin BP and 50% w/w White Soft Paraffin. NOTHING compares to this stuff- applying it thickly feels just amazing and actually helps. Please get some from your chemist if you haven't already tried it. Secondly, I had some Protopic that I used on my face and especially eyelids. It's a non-steroidal topical immunosuppresant, and it helped me to keep my face in a reasonable condition. When I had to go outside it certainly helps to have at least an okay-looking face, because the rest if me was so uncomfortable. Try some Protopic if you haven't already. It actually helped me to avoid scratching my face too, because one of the side effects is painful burning when you scratch or rub. It clears most of the inflammation, swelling, and flaking. Just avoid your lips because you may trigger a cold sore.
Good luck! I really hope that unlike me you do not flare the entire time and that you have some good times in between flares. May good skin be yours again in the not-too-distant future.
Cheers
Johan
Thanks for your comment Johan, I've been looking forward to hearing from someone else in the community. I wish you all the luck in the world with your recovery also.
ReplyDeleteInterestingly I have used the oral tablets and immuno suppressants before (cyslosporin?), and it cleared up, but only temporarily and due to my very active, high stress life, I was back on the creams shortly after. That said, I really hope it works for you, and would love for you to keep me updated.
I really appreciate the tips in creams, I see a lot of similarities of the creams I have been using as well, so perhaps yours will be even better!!
One thing I'm struggling with at the moment is my scalp. It is both itchy and dry and has a lot of flakes on it. I'm hoping that this will go away, but it's so sensitive that I just have a head full of gunk at the moment. Any tips?
All the best and please stay in touch.
Josh
Great documentation josh!!!m best of luck! My son Kline is 3.5 years old and in week 30 of withdrawal....still suffering a lot. Here is his blog!
ReplyDeleteWww.klinestopicalsteroidhell.blogspot.com
Hey Josh,
ReplyDeleteFunny I was just sorting out my own scalp and remembered that I forgot to tell you what helps me in that department.
I have been applying raw coconut oil to my scalp every night before I go to bed. If I don't need to out during the day I'll keep it an all the time. It immediately soothes the itching and flaking, and when you stop the dryness and scratching the weeping will eventually stop too.
I am using an anti dandruff shampoo for dry and sensitive scalps. It doesn't sting my scalp like my regular perfumed shampoo. I find that I can use any conditioner, but conditioner is a must. I usually have up to 8 hours of reasonable comfort using this routine, and after that it's best if I can rub some coconut oil into the scalp again. If you can't get hold of coconut oil immediately, olive oil will help too (but will stain your pillow). I find that the coconut oil really is best, so try to get some from you health food store if you can. It's actually quite nice to apply anywhere for instant moisture and itch relief, plus it smells nice naturally (unlike all of the other creams we can use). It doesn't last long though, so you can't go out for a full day with only coconut oil as a barrier. I find that the 50-Emolient keeps me from drying out longer than any of the others.
Do you mind me asking how long you were on the immunosuppressants for? My derm wants me to start on cyclosporin, and I will be on it for at least 3-6 months. Apparently the longer treatment is necessary to "reset" the immune system to it's basic state. I have been on 5 courses of oral steroids this year, no longer than 2 weeks at a time. Each time I stopped the meds I flared massively within a few days. I am banking a lot of hope on the cyclosporin! I will take anything I am given at this point as long as I don't have to deal with the red skin horror all over again!
Good luck with sorting out your scalp! I'll be following your progress on here
Cheers
Johan
I tried cyclosporin for several months (probably 3 - 4), during that time I still got red, but less so. The other unfortunate side affect was that I was constantly sick with little colds and infections and stuff.
ReplyDeleteWhen I came off the cyclosporin I really didn't notice a change at all. My derm told me the same thing about 'resetting the system', which I'm sure works for some, but unfortunately not for me.
For myself, I'm pretty certainly that its not ecsmas anymore, but a skin rash from the cortisone and based on this, the cyclosporin only helped control flares due to bad diet etc.
One thing I started a few months ago was exploring 'leaky gut' syndrome, which is basically the concept that the drugs we take have broken down the stomache and bits of undigested food get into the blood and cause flareups.
While it didn't solve the problem, I did find that avoiding dairy, sugar and gluten made a huge difference. If you are game, I would advise cutting processed sugar from your diet over 2 weeks (this is fricken hard to do). Once you've conquered that, then you won't get hunger pains and you can do a couple day water diet, followed by only eating fresh fruit, fish and chicken.
My skin improved a lot in this period, and I slow expanding out the food I ate from there. It's definitely worth exploring, sugar in particular is known as the white death and it's a bastard for our system to handle!!
I know a few guys who were completely cured of skin ailments just by giving up processed sugar.
Second the 50/50 we used it in the early days of withdrawal and like Johan says it was a lifesaver, it is kind of like runny vaseline so it doesnt 'drag' when you apply it. Like the coconut oil too, but used that only on the best bits as it just wasnt moisturising enough for the bad bits.
ReplyDeleteJohan, sounds like you have had a terrible time, hope you get some relief soon x
Since reading your comments I've tried using moroccan oil (had some in the cupboard). What a great results, the flaking is much reduced, I'm not itchy and my scalp is starting to heal.
ReplyDeleteFrom a quick google is sounds like moroccan oil is similar to coconut oil, a rich mnoisture that sinks into multiple layers of skin.
Thanks for the tip, I'm feeling much better than last week!!