It seems that people going through topical steroid rebound and withdrawal have vastly different ways of coping with the symptoms of rebound. For me, I have been trying to get as much rest as possible, finding that my skin gets worse after even minimal activity. Yesterday I went round the busy post-christmas sales with the family and felt really ill when I got home. The healing process is causing me to get very tired and my body clock is awry, finding me wide awake at 1:00 a.m. and fast asleep during the day.
Obviously, the sensible approach is to consult a doctor or qualified medical practitioner for advice how best to cope during topical steroid withdrawal. Some find natural creams such as cocounut oil or palm oil beneficial, whereas others swear by vaseline and cold ice compresses to treat the itching. The only true healer is time, but by supporting each other through withdrawal, we can find new methods of coping with the pain and redness of this debilitating skin condition known as Red Skin Syndrome.
Friday, 30 December 2011
Thursday, 29 December 2011
Day 39 Pillowcases on My Hands
I decided to take preventative measures when I went to bed last night, as I have been waking up to damaged and bleeding skin from scratching in my sleep. In the past, I have tried wearing cotton gloves to stop myself scratching in the night, but they made my hands too hot and I always seem to remove them in my sleep!
Last night I decided to improvise with a couple of cotton pillowcases placed over my hands and secured at the wrist with an elasicated hair band. My hands could move quite freely and did not get too hot, but I was unable to scratch my arms and cause more damage.
When I woke up I was pleased that my skin had not suffered any more scratch damage, as this has been impeding my progress. On the downside, the skin on my neck and chest has been weeping quite badly again, as has the skin being my ears. I know that weeping skin is all part of steroid rebound and that it is something I have to go through in order to ultimately heal, but it has to be one of the most unpleasant symptoms of steroid rebound. I hope this phase won't last too long, as I am relatively pleased with my recovery progress thus far.
Last night I decided to improvise with a couple of cotton pillowcases placed over my hands and secured at the wrist with an elasicated hair band. My hands could move quite freely and did not get too hot, but I was unable to scratch my arms and cause more damage.
When I woke up I was pleased that my skin had not suffered any more scratch damage, as this has been impeding my progress. On the downside, the skin on my neck and chest has been weeping quite badly again, as has the skin being my ears. I know that weeping skin is all part of steroid rebound and that it is something I have to go through in order to ultimately heal, but it has to be one of the most unpleasant symptoms of steroid rebound. I hope this phase won't last too long, as I am relatively pleased with my recovery progress thus far.
Tuesday, 27 December 2011
Day 37 (photo)
When it comes to Topical Steroid rebound symptoms, the phrase "One step forward, two steps back" comes to mind. My skin was realy improving recently, but the last two nights, I have woken up in the early hours of the morning in an itching and scratching frenzy. When you scratch in your sleep you don't really know what you are doing until you wake up and your skin is in shreds. I decided to post a photo to show the damage:
So you can see that the actual skin on my arm was getting whiter and calming down, but my nails have managed to gouge a lot of the skin off, leaving scabby areas which will take time to heal. There is probably some scientific explanation for why we itch, as I do think it has something to do with skin healing, but scratching can do a huge amount of damage. The backs of my legs are suffering pretty badly too and I also keep scratching my chin, so wake up with lots of blood all over my chin.
On the up-side, my skin is less tight and I can move my arms and neck a lot better. I am going to try some techniques to stop scratching, such as tying some pillowcases around my hands to see if that will help. I tried cotton gloves before, but just pulled them off in my sleep.
On the up-side, my skin is less tight and I can move my arms and neck a lot better. I am going to try some techniques to stop scratching, such as tying some pillowcases around my hands to see if that will help. I tried cotton gloves before, but just pulled them off in my sleep.
Friday, 23 December 2011
Day 33 Dr Koushik Lahiri Article on Steroid Damaged Face
Since I stopped using topical steroids, I have been actively searching the internet for stories, articles and reports about steroid cream addiction. The information is out there, but it can be rather hard to find, and sometimes I feel a little bit like Sherlock Holmes, looking for clues and information to complete the whole picture. Yesterday, I found an interesting article from the Times of India Newspaper from April 6 2011.
The article states that:
*Update The original article link is no longer available online so here is an updated medical article by Dr Lahiri
The article states that:
"These medicines have a high steroid content that may turn the skin thinner, give rise to steroid dependence, increase the pimples or rashes for which you might have been using them. Other serious complications like hirsutism (unwanted hair growth on face in women), perioral dermatitis, or rosacea can also develop. The side-effects could even be systemic. Unfortunately, these creams and ointments are available over the counter without a prescription, which is not the case anywhere else in the world," said Koushik Lahiri, consultant dermatologist and a senior member of the IADVL, who was associated with the study.In India, they call the condition TSDF, ot Topical Steroid Damaged Face. In the West, it is known as Red Skin Syndrome. It is shocking that the article estimates that indiscriminate use of these potent steroid creams have resulted in over 30,000 people suffering from the condition in Kolkata. Obviously, this gives an indication of how big the problem is worldwide and why more need to be done to control the use of these potent steroid creams.
*Update The original article link is no longer available online so here is an updated medical article by Dr Lahiri
Thursday, 22 December 2011
Day 32 (photos)
I thought I would upload a few more photos charting my progress.
As you can see, my poor face is still quite blotchy, especially around the chin and nose, and my neck is completely raw. Unfortunately, I keep scratching my face in my sleep, so when I wake up, it is usually bleeding! On the plus side, the oozing and crusting has stopped, which I am happy about. The skin on my cheeks is relatively normal, so I hope the rest will follow, although the redder areas were where I used the most potent steroid creams so they will take longer to heal. The steroid induced rosacea that I had on the sides of my nose as a direct result of applying the strong steroids has gone completely since stopping the steroid cream.
I think my hands look like old lady's hands, thanks to the large patch of red, leathery skin on the back of my hand. Again, this is an area where I never applied steroids before, but as soon as you stop using the steroid creams, the rebound effect covers the whole body, due to the vasodilation of the blood vessel and capilliary network in the body. The blood vessels have been suppressed by the steroid creams for so long, they are going crazy as they have to re-learn how to function properly again.
My neck area is making great progress compared to the previous photos I posted of this area. The redness is now confined to the central area and I think this is because this area creases when I sleep on my side and sweats more. The rest of the neck area is nice white skin and gives me hope that soon the whole area will be normal again.
My arms and wrists are continuing to cause me a lot of problems. Most people in the google support group are having problems with the skin on their arms, with the redness stopping short of the palm. My arms are very itchy at night and I keep waking up and finding them raw as I have scraped the skin off, slowing the healing down. I try to use as little product on my skin as possible to avoid irritation, but I moisturise my arms, otherwise I can't bend them properly.
Progress seems to be slow, but things are definitely improving. I look forward to posting some really good skin photos in the coming months. The thing I am happiest about at this point is the improvement in the neck and chest areas. My face is slowly improving, my arms are about the same and my legs are worse, but at least I can keep those areas covered up. The photos are hard for me to look at, but a reminder of the damage that steroid creams can do to skin. In fact, the Japanese doctor, Dr Fukaya MD did an experiment putting steroid cream on healthy skin to see the effects and the results showed the damage that the steroids did to the skin layers. Shocking stuff.
I was reading the newspaper today and was shocked to see a dermatologist recommend using OTC hydrocortisone cream to treat chapped winter skin. Steroid creams are used worldwide for a range of skin conditions, including rosacea, psoriasis, eczema and also to lighten skin. Many people, including doctors it seems, think that they are harmless. I would like them to see my photos and recognise the damage that overuse of steroid cream does to the skin and body.
Progress seems to be slow, but things are definitely improving. I look forward to posting some really good skin photos in the coming months. The thing I am happiest about at this point is the improvement in the neck and chest areas. My face is slowly improving, my arms are about the same and my legs are worse, but at least I can keep those areas covered up. The photos are hard for me to look at, but a reminder of the damage that steroid creams can do to skin. In fact, the Japanese doctor, Dr Fukaya MD did an experiment putting steroid cream on healthy skin to see the effects and the results showed the damage that the steroids did to the skin layers. Shocking stuff.
I was reading the newspaper today and was shocked to see a dermatologist recommend using OTC hydrocortisone cream to treat chapped winter skin. Steroid creams are used worldwide for a range of skin conditions, including rosacea, psoriasis, eczema and also to lighten skin. Many people, including doctors it seems, think that they are harmless. I would like them to see my photos and recognise the damage that overuse of steroid cream does to the skin and body.
Wednesday, 21 December 2011
Day 31 Yellow Card Scheme to Report TSW
I had thought myself lucky that I hadn't been itching too badly but that all changed last night. I woke up at 2 in the morning to find that I had been frantically scratching my arms in my sleep and had scratched them to raw, bleeding ribbons. The urge to scratch was overwhelming, like there were creatures under my skin. I sat in the bathroom and clawed at my legs and arms, even though I knew I was doing damage. When you scratch, the sensation is pure pleasure and completely compulsive, you do it even though you know you will suffer later. I had to physically make myself stop my clasping my hands together as tight as I could for as long as possible before releasing. It seemed to help.
I had to have an epsom salt bath to releive the itch. I start the bath warm and then let it go really cold. As the bath water cools, I can feel my skin cooling down and calming. I then pat it dry gently and apply a small amount of hemp seed cream to the driest areas, although I am trying to use as little cream on the skin as possible. I then went back to bed with a pillowslip wrapped round my neck to mop up the neck ooze.
Fun Fun Fun....
On a completely different note, people in the UK suffering side effects from steroid cream usage can report the medication via the yellow card scheme:
http://yellowcard.mhra.gov.uk/
The form takes about 10 minutes to fill in and provides feedback to the drug companies about side effects of their medicines. I mentioned the fact that I had used steroid creams for years, needing stronger doses until they caused reddening on my face. I also mentioned how painful withdrawal has been. Hopefully, if enough people complain, the companies will need to put stronger warnings on the steroid creams. I'm not against the use of topical steroids. It is the ABUSE of these creams that causes long term problems. People need to be informed how to use them safely to avoid addiction.
I had to have an epsom salt bath to releive the itch. I start the bath warm and then let it go really cold. As the bath water cools, I can feel my skin cooling down and calming. I then pat it dry gently and apply a small amount of hemp seed cream to the driest areas, although I am trying to use as little cream on the skin as possible. I then went back to bed with a pillowslip wrapped round my neck to mop up the neck ooze.
Fun Fun Fun....
On a completely different note, people in the UK suffering side effects from steroid cream usage can report the medication via the yellow card scheme:
http://yellowcard.mhra.gov.uk/
The form takes about 10 minutes to fill in and provides feedback to the drug companies about side effects of their medicines. I mentioned the fact that I had used steroid creams for years, needing stronger doses until they caused reddening on my face. I also mentioned how painful withdrawal has been. Hopefully, if enough people complain, the companies will need to put stronger warnings on the steroid creams. I'm not against the use of topical steroids. It is the ABUSE of these creams that causes long term problems. People need to be informed how to use them safely to avoid addiction.
Tuesday, 20 December 2011
Day 30 More People are Learning About TSW
It feels great to have a month of steroid withdrawal under my belt, even though I am currently in my second flare, with sticky discharge on my face and red, leathery skin on my arms and legs! I got a day of complete bed rest yesterday, which helped a lot, as the withdrawal takes a huge toll on the body. In addition to the bad skin, I have very little energy and I am also having shivering episodes and sweating episodes. As a rather odd side effect, I have also noticed that my eyesight seems to have deteriorated, though I am not sure what the reasons are for this and whether it is connected to the steroid withdrawal, although I did read an interesting article by a Japanese doctor, warning that those going through withdrawal should have regular eye exams because of risk of cataracts forming.
I have been following the Google support group closely, as "the cause" seems to be gaining momentum, with a push for more publicity about topical steroid withdrawal. Countries like Japan have been aware of the bad effects of topical steroids since the mid 90's, and many other Asian countries take topical steroid addiction seriously, as women in these countries often use topical steroids to lighten the skin and then become addicted with constant use, leading to the well known symptoms of atrophy,skin thinning, pustules and prominent blood vessels on the skin surface. Consequently, these countries are way ahead of the Western world when it comes to recognising and treating topical steroid addiction, or Red Skin Syndrome.
Every day, the group seems to gain new members, as people realise that topical steroids are harming their skin. Of course, when they try to stop using steroid creams, the rebound effect is burning, painful skin, and the group can be a lifeline, encouraging patients that these symptoms are normal and will pass with time. The most important message is that this is not eczema, it is Red Skin Syndrome, which mimics dermatitis, but differs from true eczema as it burns and causes a red spongy rash that spreads to cover most of the body, whereas real eczema is usually confined to small patches in specific areas, such as behind the knees or in the elbow creases.
I have been following the Google support group closely, as "the cause" seems to be gaining momentum, with a push for more publicity about topical steroid withdrawal. Countries like Japan have been aware of the bad effects of topical steroids since the mid 90's, and many other Asian countries take topical steroid addiction seriously, as women in these countries often use topical steroids to lighten the skin and then become addicted with constant use, leading to the well known symptoms of atrophy,skin thinning, pustules and prominent blood vessels on the skin surface. Consequently, these countries are way ahead of the Western world when it comes to recognising and treating topical steroid addiction, or Red Skin Syndrome.
Every day, the group seems to gain new members, as people realise that topical steroids are harming their skin. Of course, when they try to stop using steroid creams, the rebound effect is burning, painful skin, and the group can be a lifeline, encouraging patients that these symptoms are normal and will pass with time. The most important message is that this is not eczema, it is Red Skin Syndrome, which mimics dermatitis, but differs from true eczema as it burns and causes a red spongy rash that spreads to cover most of the body, whereas real eczema is usually confined to small patches in specific areas, such as behind the knees or in the elbow creases.
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