On my last post, I had a comment from a guy called Jason, who has just started his own blog:
http://itchyred.blogspot.com/
He has just stopped using steroid cream and wanted me to give a brief rundown of what works best for me. I know I have mentioned it before, but this blog is getting pretty big now and it is easy to lose stuff, so here's a recap for all the newbies......
Hopefully, you have an understanding doctor or dermatologist who can help you through this, although some of us unfortunately have to do this with very little support. Very few doctors understand the facts about TSW, although this is slowly changing, thanks to ITSAN and dedicated experts such as Dr Rapaport, Dr Fukaya and Dr Sato, who have led the way in changing opinion in the medical field. ITSAN is compiling a list of TSW-friendly doctors, so there may be one near you.
You will likely be disabled for a while. Don't think I am exaggerating. As soon as you stop the creams, the body senses the drop in cortisone and the adrenals have to work really hard to make up the shortfall. This can result in intense tiredness and weird symptoms like chills. In addition to this, your skin will probably get "angry" due to the buildup up Nitric Oxide, a potent vasodilator, so expect red, oozy skin. If you are affected this way, try to book a few weeks off work if you can, because this is going to take a lot out of you. Parents with kids, please consider getting as much help as you can. In the early days, my husband had to take the kids to school and do the housework, because I was so ill.
Educate yourself. Itsan.org is full of resources. Read all of the medical articles and print them off to show your doctor and friends. Read all the blogs (listed on the right of the page) and follow the threads on the itsan forum. Listen to the recorded teleconferences with Dr Rapaport which explain very simply why we flare like this when we stop the steroids and why we can be confident that we will heal.
You have to find your own preferred method of getting relief. Some people like cold compresses, like ice packs, whereas others like heat. Find comfortable, loose clothing that does not irritate you. Cotton pyjamas are good whilst at home. Find something to put over your hands at night to stop yourself scratching and make sure to take an antihistamine before bed.
Find a moisturiser that suits YOU. I like Hemp hand protector from the Body Shop, but it irritates some people. Some like coconut oil, Vaseline, palm shortening or other products. You have to find the one that suits your skin and only use it sparingly; Doctor Fukaya says apply for movement, never for a cure. In other words, use as little moisturiser as you can get away with. Large amounts will irritate you.
Invest in a silk pillowcase. They are very cooling on the skin at night and can be wrapped around oozy areas like the neck.
For swollen limbs, keep legs elevated above heart level. try and rest as much as possible.
I liked to have an epsom salt bath every day in the early stages. Others like to use oatmeal in the bath. Again, whatever suits you. Some people don't like baths, but I got a lot of relief from bathing daily.
As for flares, avoid alcohol like the plague, it is very bad for flareups. I also think that stress flares the skin more too, so try and stay calm. A nice relaxing herbal tea containing valerian should help.
Enjoy the good days. You will get a break between flares so make the most of them.
I hope this helps. I wish you the best Jason and all the other newbie steroid quitters.
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