When I’m stressed and need alone time I tend to write on my blog. So my eczema is still under control. I haven’t had to use steroids at all. I do have a bit of eczema in the usual places but it is very mild and not very noticeable. I forgot to mention that when I first stopped using topical steroids I started to get eczema in places I’ve never had eczema before. I don’t remember when, but it has pretty much disappeared. To be honest I’m a little sad. I feel that I can’t really contribute to this blog anymore but I still want to support those who are going through TSW 🙂
Best of luck everyone!
It worked, at least for me 🙂 It took about 1 painful year. Of course, it is by no means “cured”. My skin just doesn’t flare up and go blotchy red scaly skin. I do still get the occasional mild itch on my elbows or hands that goes away pretty quickly.
If you read my previous post you know that I’ve recently returned home to Canada from Ireland. I was skeptical whether my eczema got better because I went to live in a more humid place or because I had stopped using topical steroids for over a year by the time I was in Ireland. After spending 2 weeks back in a very dry climate in Canada, my skin got a lot drier but never once did it flare-up like it would in the past, especially in the winter where the heater drys out my skin. It’s incredible that only one year ago, I would take a morning bath to moisturize my skin and my neck would be flaming red and feeling raw. I’m really happy I stopped using topical steroids. Sometimes I worry that if I stay longer in Canada, my eczema would creep back with a vengeance. Hopefully it was the topical steroids all along.
Thinking back, my eczema was so bad during the first few months of topical steroids withdrawal that I wondered if I was making a mistake and whether it was worth it. I can now say it was for me 🙂 Instinctively, I felt that there was a good scientific possibility that steroids was making my eczema worse and so I kept up with it. I really hope that other people will give TSW a try and add to the growing number of people that has benefited from it.
First, I would like to apologize for neglecting this blog. It’s amazing how motivated one is when they first start something and how it dwindles and dies over time. I remember telling myself that I won’t be that person who forgot to write on her blog when things got better but it is exactly what ended up happening. It’s been 7 months since my last post. I’m happy to say I haven’t had a single flare-up since August. I still get the occasional dry skin on my neck and elbow but nothing like the flaming red flare-ups in the past. However, I can’t say for sure that topical steroids withdrawal is responsible because I left for Ireland in mid-August. I moved from a very dry place in Canada to a very humid place and this may well be the very reason for my skin improvement. However, there is also that possibility that had I not stopped using topical steroids my eczema would have been worse in Ireland. I will be back in Canada during Christmas. It will be interesting to see whether I get a flare-up there. Until then, Merry Christmas everyone!
Have any of you ever noticed how your eczema would suddenly improve or worsen in certain occasions? Well over the years I’ve noticed a few things about my eczema. It has always fascinated me and I wondered if this was true for others with eczema.
1) It seems to improve during menstruation
2) Sometimes I’m so tired I fall asleep without showering or moisturizing and I wake up with non-inflamed or red but very dry skin
3) Sleeping a lot seems to help with eczema
4) When I get sick with the flu or a cold my eczema magically improves
5) I’m asian and I suffer from low alcohol tolerance. What I notice is that if I drink a lot of alcohol I have really bad eczema that night but really good skin the next morning.
6) Probiotics seem to help occasionally
7) It gets worse with stress and lack of sleep! Sadly impossible to avoid as a Medical Student 😦
Let me know about your strange experience with eczema!!
For these past few months my eczema has been pretty much the same. I posted earlier that the eczema on my shoulders that I got when I stopped using topical steroids finally went away. That is still the case except that the skin there has become very dry, wrinkly and flaky. I’m still fighting eczema on my neck, elbows, behind the knees, face, and the eczema that has spread to my lower back, arms and hands. It quite scary to go from having eczema in a few areas to having almost full body eczema when you stop topical steroids. Sometimes I wonder if it will ever go away but I guess 7 months in is too early to tell. Bleach baths, vaseline and lots of sleep seem to help a lot.
I’m going to kill myself for not keeping a better track because I’m sure some of you would really like to know when I started seeing improvements. It has been at least 2 weeks since I have not had a major flare-up equal to the ones I’ve had in the past. I did have a short itch attack once or twice. In addition, my eczema has not prevented me from sleeping for the longest time. The improvements are to a point where I would not have considered using steroids in the past at all because its only mildly red. In short, it feels like the severity and time between flares have decreased. The only negative thing is that I’m still quite itchy occasionally although not as flaky. In addition, the eczema that was induce on my shoulders, stomach, and chest have not gone away.
I would love to say that topical steroid withdrawal helped but it could also be the changes in weather from winter to spring (cheers!). Its too early to say but I will keep everyone updated!
I feel very much like I traded one hell for another. In place of a constantly red and inflamed neck (prior to TSW) I now deal with alternating periods in which my skin is calm and smooth followed by periods of an intensely raw and itchy sensation. During the bad periods, the eczema is localized in the entire region above my chest and along my entire arm. My eyelids are dry and itchy, my cheeks and forehead display a reddish blush, and the skin around my shoulders peel like grated chocolate curls. I call this a new hell because while my neck is noticeably less red than it has been in the past, the fact that topical steroid withdrawal (TSW) induced eczema on my shoulders make it physically painful to move, wear backpacks or bras due to the rawness and sensitivity. Most fabrics now irritate my skin making it impossible to wear many of my clothes. When the eczema was just on my neck, I didn’t have to worry about these things because it was literally bathed in air. The worse part of TSW is the pain. I can’t describe it perfectly but its almost an intense itchy sensation. You want to scratch it but you know that if you do, the skin becomes more sensitive. When I fight the urge to scratch, it feels like ants are crawling up my skin. I’m not sure if I should call this burning. It’s a lot more intense and painful than what I dealt with prior to TSW. This burning sensation is constant, so for the whole day I feel pretty much like I’m in pain. Sometimes I get so sick of it that I wish I was never born. Despite this, when the good period comes its absolutely rewarding! For anyone deciding TSW, just please make sure that you prepare yourself mentally and emotionally because it literally is like a roller coaster.