Today was lucky. After a few mornings of waking up with a wet neck, I was blessedly dry this morning.
My worst areas are my hands, which are always incredibly dry and itchy. I'm currently doing moisturiser withdrawal on them as dry and ashy is feeling better than red and swollen right now.
My neck is also a super bad area, with lots of oozing. Thank goodness for silk scarves and hair bobbles. Made the mistake of wearing my hair down to the shops and it was all stuck to my neck when I got home.
My face isn't too bad. Just ashy round the mouth area. I've also scratched a big graze into my jawline.
Here are my pics.
Despite this, I'm able to get out and about and live my life. I've been on a few big days out recently, including theme parks. It's hard, but that's TSW for you.
Cant believe I will be 4 years off steroid creams in November. I'm still on low-dose steroids for my asthma, so sometimes question whether I am actually in true TSW, or just bubbling under. My asthma is really bad right now, so I've no negotiating room with my doctor to get off the steroid at the moment. In the summer, when my asthma improves, I will ask the asthma nurse about the possibility of the non-steroidal preventers.
I'm currently using quercetin and vitamin C as well as vitamin D in the hope of helping symptoms, although I've yet to see any benefit from either.
11 comments:
Hi Louise, This is atopiclady, just wondering for your asthma are you on Singulair? I have asthma as well and am still using a steroid inhaler, but I also use Singulair and find it helps control it better.
Has this flare mainly been face and neck? Hope you improve soon! It must be so frustrating.
Hi, no I'm not on singulair. I did ask the doctor about it but they wouldn't let me try it. My flare has been mainly neck and hands. My hands are very dry and my neck is oozy. My face isn't too bad. Hope you are ok too. X
Hello Louise, I have the same areas that are not getting better. My hands and neck are often itchy, and I habitually scratch them morning, noon and night. I am 18 months into this....I can totally relate...
Hi Louise. It would be just awful if the last 4 years were withdrawal limbo :( especially if you can't actually go off the steroid inhaler. I really hope in summer things can improve and you can give the NS preventers a go, even it that might make you go through withdrawal again. You'd think inhalers would spare you from the deadly itch, oozing and insomnia but no :( it makes me very sad. Best of luck with it!!! I look forward to when Summer returns for you .
Yes. I try and stay optimistic, especially as I had a healing phase back around 21 months, even though I was also taking the steroid inhaler at the time. I do worry, but I am glad that I'm off topical steroids. How is your sister doing now?
My sister hasn't taken any photos so its hard to tell exactly what is going on. She says her skin is stagnant at the moment, but I can't imagine it will be like that for much longer.
Dear Louise;
In the moment of despair, i simply wrote what i see in my body to google and clicked your blog, I've realized what i'm facing off. I used corticosteroid only one week and when i quit, i felt strange itching on my shoulders and forearms. Later, developed wet wound on my shoulders which looks like your leg you mention in your post on 29 May 2012.
I've had this curse since beginning of July, besides no improvement and i noticed the symptoms are same as yours. If you need to make an analogy, it feels like my wound is melting down continuously.
You enlightened me. I'm very grateful for that. I've read your entire blog and understand your suffering, it drowns me to thoughts. I deeply wish you well.
Hello Louise. I am living in Ireland and have been enduring TSW for 4 years and two months. Never thought that it would take this long. Nightmare. Having read lots of posts it seems that there are not a lot of people suffering after such a long time. I have no intention of using steroid creams again but when healing takes this long it gives you doubts. No turning back now though. Just wanted to give you some advice regarding the inhalers. Last year I went to see my doctor about giving them up because I thought that they were prolonging my withdrawal. He did a lung fuction test and said that there should be no problem in giving them up. I stopped using them and my asthma got steadily worse but I thought that if I endured it that it would slowly improve. Had a lot of mucus and daily coughing fits to clear the mucus and then would be fine till the next coughing fit. To cut a long story short I ended up spending 10 days in intensive care with pneumonia and 1 month in total in hospital due to also having an empaiema( an infected sac between my lung and ribcage) for which I had to have 2 seperate drains fitted. I have read a lot of posts on forum and read a lot of blogs and I know how the whole TSW thing works. It a headwrecker to say the least. People say that just because one person had a certain experience that doesn't mean that another person will. DO NOT GIVE UP YOUR INHALERS. I had to go back on them and I have no coughing fits at all now and never had before I stopped using them. Using becotide 50 micrograms twice in the morning and twice at night. Don't know what effect this will have on my withdrawals but I know I have to use them. Just trying to help you if I can. Best of luck with it all. Take care.
Thank you so much Donal for sharing your experience. It must have been absolutely awful for you.
I'm on the lowest dose seretide at the moment and its tiding me over. I decided to use a spacer so that I can get more of the medicine directly to the lungs and not around my mouth area. After using the spacer I then rinse my mouth out. I also have a salt pipe which I use, which seems to help with the mucus. I'm not in any position to give up my steroid inhalers yet, but I do take heart in the fact that my skin has been improving this week and has been healed before, even though I was taking higher dose inhalers then.
I wish you all the best and please drop in to the comments section let me know how you are doing in the future. X
Hi there. Your experience sounds terrifying :( did you stop all kinds of inhalers? Because the non steroid ones are fine :/
Hi Louise,
I am not sure why doctors won't let you try singulair. Steroids of any form increase IgE levels and singulair has been shown to decrease IgE levels in asthma and eczema patients. You may want to try to ask a doctor that you want it for your skin and allergies. It has been shown to help eczema as well. Me and my brothers TSW symptoms improved somewhat after taking the drug. There must be a way for you to maybe use singulair and albuterol inhalers instead. I truly hope you get relief soon for you skin and asthma because you are a great inspiration for all.
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