Most people with Red Skin Syndrome will have likely experienced insomnia at some point during their steroid withdrawal. This is likely because of the link between the stress hormone cortisol and sleep. Long term use of steroid drugs interferes with our HPA axis and could explain why insomnia is so common in TSW patients.
In normal people, the cortisol levels are lowest around midnight and highest about 8 am. This promotes a healthy night's sleep. When our natural rhythm is disturbed, problems can occur.
I bought a fitness tracker back in December and one of its functions is recording my sleep patterns. I immediately noticed a recurring pattern with my sleep cycle. It takes me a long time to get to sleep, even if I go to bed early. I dont usually fall asleep until about 11:30 pm. I then go into a very deep sleep for an hour or so, followed by a light, broken sleep. At around 3-4 a.m. I wake up and them I'm wide awake for an hour or more. I'm usually hungry too, which I believe is due to low blood sugar levels. I then drop off again and enter a really deep sleep cycle, which is unfortunate, as it coincides with when I have to wake up. When the alarm goes off, I'm really tired and shaky. If I don't set the alarm, I will have a deep sleep cycle between about 5-8:30 a.m. and then wake up. So basically my sleep cycle is the wrong way around.
Over the next few weeks, I'm going to be trying different things to help my insomnia. The first thing I've tried are Kalms Night tablets which cost about £5 for 50 pills. They contain valerian root extract as the main ingredient.
I was surprised that the nightly dose was 4 tablets. This means that each pack only has enough pills for 12 nights. The tablets were sugar coated and easy to swallow and tasted pleasant.
I have nearly finished the pack and haven't noticed any difference in my sleep pattern. The fitness tracker data confirms that my patterns have been exactly the same as when I don't use the tablets.
Therefore the Kalms Night tablets didn't work for me, unfortunately.
Back to the drawing board. I'll be trying more remedies soon in the hope of finding the elusive cure for my insomnia.
On the plus side, my skin is REALLY good right now, but more on that in another post!
Monday, 22 February 2016
Sunday, 24 January 2016
The Dangers of Steroid Cream Addiction in the News
I was glad to see another Daily Mail article featuring TSW today.
A lot of people in the TSW community will know Jake And Libby and their amazing story of Jake's full recovery from dependence on steroid creams. It's a great reminder that it is possible to heal from this condition and that there is light at the end of the tunnel.
Thank you so much Libby and Jake for all that you do in raising awareness!
A lot of people in the TSW community will know Jake And Libby and their amazing story of Jake's full recovery from dependence on steroid creams. It's a great reminder that it is possible to heal from this condition and that there is light at the end of the tunnel.
Thank you so much Libby and Jake for all that you do in raising awareness!
Friday, 22 January 2016
Topical Steroid Abuse in Taiwan
In Taiwan, even the most potent steroid creams are available over the counter without a prescription and this is causing big problems for dermatologists who have to deal with the aftermath.
Since a reporting system was set up, hospitals were reporting over 500 cases of topical steroid abuse a month, according to Focus Taiwan News.
We are thankful that organisations like ITSAN exist to support these people through what is likely to be an horrific withdrawal phase.
Since a reporting system was set up, hospitals were reporting over 500 cases of topical steroid abuse a month, according to Focus Taiwan News.
We are thankful that organisations like ITSAN exist to support these people through what is likely to be an horrific withdrawal phase.
Wednesday, 20 January 2016
New Medications for Eczema in the Pipeline
Now that the medical community are becoming more aware of the dangers of steroid rebound, many new and exciting innovations are taking place within the pharmaceutical industry. Targeted medication seems to be the new buzz-word and is generating a lot of interest.
The NEA recently featured an article about a targeted medication that has the potential to change lives. I like the fact that the article actually mentions steroid rebound as a bad side effect of steroid medication.
Wouldn't it be great if these new, targeted medicines became the standard treatment for eczema and steroid creams became a thing of the past? Maybe it's a long way off, but I live in hope. It would be so good if the next generation didn't have to suffer the way that we have from overuse of steroid creams.
The NEA recently featured an article about a targeted medication that has the potential to change lives. I like the fact that the article actually mentions steroid rebound as a bad side effect of steroid medication.
Wouldn't it be great if these new, targeted medicines became the standard treatment for eczema and steroid creams became a thing of the past? Maybe it's a long way off, but I live in hope. It would be so good if the next generation didn't have to suffer the way that we have from overuse of steroid creams.
Monday, 11 January 2016
Cold Weather Hives
I'm going to write about weather-induced allergy today because it is something that affected me badly when I was using steroids.
Back when I used strong steroids on my face, my face became very sensitive to external stimuli. One problem that I had was whenever I would go outside in cold weather, my face would break out in hives. At first, it was just one or two spots, but after prolonged steroid use, the welts got really bad. It became a big problem for me in winter, as I would have to walk my children to and from school, which would result in a messed-up face most days.
Anyway, as readers will know, I've been off steroid creams for 4 years now. I'm on a bit of a fitness kick to lose all the weight I put on during that time (I lost 7lbs already!) and I went for a walk this morning. I walked several miles in the cold, January UK weather and suddenly something occurred to me. My face wasn't itchy. I didn't have hives. The arctic wind was blasting my face and my face was ok!
I find this sort of progress really encouraging. Cold induced hives were a big problem for me for such a long time and they have vanished over time without me even noticing. This must mean that my skin is getting stronger. I'm not fully healed yet, but this is a really big step for me. I dont have to fear the cold any more!
I'd love to know if anyone else has ever had this problem. Has the weather ever affected your skin? Did you think that steroid creams were to blame? Has you skin improved since stopping steroids? Please share your experiences.
Back when I used strong steroids on my face, my face became very sensitive to external stimuli. One problem that I had was whenever I would go outside in cold weather, my face would break out in hives. At first, it was just one or two spots, but after prolonged steroid use, the welts got really bad. It became a big problem for me in winter, as I would have to walk my children to and from school, which would result in a messed-up face most days.
Anyway, as readers will know, I've been off steroid creams for 4 years now. I'm on a bit of a fitness kick to lose all the weight I put on during that time (I lost 7lbs already!) and I went for a walk this morning. I walked several miles in the cold, January UK weather and suddenly something occurred to me. My face wasn't itchy. I didn't have hives. The arctic wind was blasting my face and my face was ok!
I find this sort of progress really encouraging. Cold induced hives were a big problem for me for such a long time and they have vanished over time without me even noticing. This must mean that my skin is getting stronger. I'm not fully healed yet, but this is a really big step for me. I dont have to fear the cold any more!
I'd love to know if anyone else has ever had this problem. Has the weather ever affected your skin? Did you think that steroid creams were to blame? Has you skin improved since stopping steroids? Please share your experiences.
Tuesday, 8 December 2015
Daily Mail Features Story on TSW
Thanks brave Laura for sharing your story and raising awareness. I love that TSW has been in the news so much lately. The world needs to know about this!
http://www.dailymail.co.uk/health/article-3350782/Eczema-patient-spent-20-hours-day-bath-soothe-flaking-skin-suffering-severe-reaction-stopped-using-steroid-creams.html
http://www.dailymail.co.uk/health/article-3350782/Eczema-patient-spent-20-hours-day-bath-soothe-flaking-skin-suffering-severe-reaction-stopped-using-steroid-creams.html
Monday, 30 November 2015
Observations on my Moisturiser Withdrawal Regime
A couple of weeks ago, I wrote about my desire to give moisturiser withdrawal another try, even though I'd struggled with it in the past. The reason for this was because I found that my skin was reacting to everything and needed a break.
I'm trying to follow Dr Sato's guidelines strictly, as he has had proven success using this method with his TSW patients. He has quite a strict interpretation of what constitutes moisturiser use so I'm using the Sato method to the best of my ability.
These are some of Sato's rules:
No cosmetics: Not an issue for me, as I haven't worn any makeup in a couple of years.
No moisturisers at all: I've been a good girl and followed this to the letter.
No long soaks in the bath: I've been a bit naughty with this because I do love a long bath and my other vice is that I like my water hot. I redeemed myself a little by having a full bath as infrequently as possible and just wiping over my skin with plain water or Epsom soap to maintain good hygiene.
No picking scabs: I'm getting better at this one and it's REALLY important. It's so tempting to pick a scab or a big skin flake, but it does you no favours, the skin underneath is usually raw and wet and the whole process will start again. Leave it alone! My biggest problem is scratching off scabs and flakes in my sleep. I don't really have much control over that.
In conclusion, I've been pretty good following Sato's regime and I'm pleased to say that even as early as two weeks in, I'm seeing results! The redness is largely gone and skin flares seem shorter in duration. The large skin flakes have been replaced with smaller ones, which make the skin look a little dry, but not blotchy or red. It's a fair compromise.
The downside is the itch, which can be bad at night and sometimes I damage my skin in my sleep. Hopefully this will be less of an issue with time.
The plus side is the improvement in my skin and the savings I'm making on skin products!
So those are my observations, two weeks into MW. I'm not going to lecture anyone or make people feel bad about moisturising, as the decision to moisturise is a very personal one. If moisturisers are helping your TSW then do what you need to for comfort. However, in my case my skin was reacting to absolutely everything, so this was a signal to stop. My experience with MW this time round has been very different to when I tried it in 2013. It was really horrible then and my skin was cracked and bleeding. This time round, my skin seemed ready for it and discomfort has been minimal.
4 years in and this is a new phase for me. Maybe a final push toward healing.
I'm trying to follow Dr Sato's guidelines strictly, as he has had proven success using this method with his TSW patients. He has quite a strict interpretation of what constitutes moisturiser use so I'm using the Sato method to the best of my ability.
These are some of Sato's rules:
No cosmetics: Not an issue for me, as I haven't worn any makeup in a couple of years.
No moisturisers at all: I've been a good girl and followed this to the letter.
No long soaks in the bath: I've been a bit naughty with this because I do love a long bath and my other vice is that I like my water hot. I redeemed myself a little by having a full bath as infrequently as possible and just wiping over my skin with plain water or Epsom soap to maintain good hygiene.
No picking scabs: I'm getting better at this one and it's REALLY important. It's so tempting to pick a scab or a big skin flake, but it does you no favours, the skin underneath is usually raw and wet and the whole process will start again. Leave it alone! My biggest problem is scratching off scabs and flakes in my sleep. I don't really have much control over that.
In conclusion, I've been pretty good following Sato's regime and I'm pleased to say that even as early as two weeks in, I'm seeing results! The redness is largely gone and skin flares seem shorter in duration. The large skin flakes have been replaced with smaller ones, which make the skin look a little dry, but not blotchy or red. It's a fair compromise.
The downside is the itch, which can be bad at night and sometimes I damage my skin in my sleep. Hopefully this will be less of an issue with time.
The plus side is the improvement in my skin and the savings I'm making on skin products!
So those are my observations, two weeks into MW. I'm not going to lecture anyone or make people feel bad about moisturising, as the decision to moisturise is a very personal one. If moisturisers are helping your TSW then do what you need to for comfort. However, in my case my skin was reacting to absolutely everything, so this was a signal to stop. My experience with MW this time round has been very different to when I tried it in 2013. It was really horrible then and my skin was cracked and bleeding. This time round, my skin seemed ready for it and discomfort has been minimal.
4 years in and this is a new phase for me. Maybe a final push toward healing.
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