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.
Friday, 16 December 2011
Day 26 Lack of Sleep
Today, I want to tackle a problem that affects everyone going through topical steroid withdrawal: sleep depravation. It is something that is discussed a lot by the support group and afffects people in various ways.
Coming off the steroid creams has an instant effect on body chemistry. The whole body becomes red and burning, with itching and oozing skin. Something serious is obviously going on inside the body, and studies of people withdrawaing from steroid creams have noted high nitric oxide levels, as well as abnormally high levels of ADH in the body. Stopping steroids affects the body clock and our natural circadian rhythm. It is also difficult to sleep because it is hard to get comfortable in the bed. Sufferers alternate between profuse sweating and shivering, and can wake up covered in dry, tight flaky skin or wet, oozing areas of skin, which make something as simple as turning over in bed very difficult.
The last four nights have been really hard for me. My sleep routine is bizarre. First of all I take an antihistamine, then I lightly moisturise my worst affected areas, such as my chest and arms and face. I then stuff tissue into my bra and under my bra straps to mop up the oozing in the chest area and pop a small hand towel around my neck in a roll to prevent oozing in the neck area caused by sweating when I sleep. I lie awake in bed for hours, finally falling asleep around 1 or 2 in the morning, but waking frequently and having to re-moisturise my skin, change my clothing or change the tissue. I may get about 3 or 4 hours sleep, before having to wake up and lauch straight into my morning routine getting everyone ready for school.
Needless to say, I am suffering mentally today after 4 nights of minimal sleep. My skin is about the same, but emotionally, I am really teary, edgy and angry. It is hard to cope. No wonder they use sleep deprivation as a form of torture. I would love a hug or some support from my family members but they are so fed up of me snapping at them that I have pushed them all away. My little boy was crying this morning because he wanted me to "stop being angry".
This is hard on everyone.
Coming off the steroid creams has an instant effect on body chemistry. The whole body becomes red and burning, with itching and oozing skin. Something serious is obviously going on inside the body, and studies of people withdrawaing from steroid creams have noted high nitric oxide levels, as well as abnormally high levels of ADH in the body. Stopping steroids affects the body clock and our natural circadian rhythm. It is also difficult to sleep because it is hard to get comfortable in the bed. Sufferers alternate between profuse sweating and shivering, and can wake up covered in dry, tight flaky skin or wet, oozing areas of skin, which make something as simple as turning over in bed very difficult.
The last four nights have been really hard for me. My sleep routine is bizarre. First of all I take an antihistamine, then I lightly moisturise my worst affected areas, such as my chest and arms and face. I then stuff tissue into my bra and under my bra straps to mop up the oozing in the chest area and pop a small hand towel around my neck in a roll to prevent oozing in the neck area caused by sweating when I sleep. I lie awake in bed for hours, finally falling asleep around 1 or 2 in the morning, but waking frequently and having to re-moisturise my skin, change my clothing or change the tissue. I may get about 3 or 4 hours sleep, before having to wake up and lauch straight into my morning routine getting everyone ready for school.
Needless to say, I am suffering mentally today after 4 nights of minimal sleep. My skin is about the same, but emotionally, I am really teary, edgy and angry. It is hard to cope. No wonder they use sleep deprivation as a form of torture. I would love a hug or some support from my family members but they are so fed up of me snapping at them that I have pushed them all away. My little boy was crying this morning because he wanted me to "stop being angry".
This is hard on everyone.
Thursday, 15 December 2011
Day 25 (videos)
A few of the members of the steroid withdrawal group have been making videos charting their progress since they stopped the steroid creams:
In this video, Tracy explains why he started using steroid creams and what has happened to his skin since he stopped using the creams. Note the similarity between the skin pattern on his arms and the photos that I uploaded onto the blog. The pattern of red arm and white palm is typical of steroid withdrawal.
In this video, we see a brief interview with Dr Marvin Rapaport MD, who has treated over 2000 patients with Red Skin Syndrome and has achieved 100% success rate.
This is an amazing video from Japan charting the progress of someone going through steroid withrawals and showing the complete healing at the end. The pictures at the end of the video compare the skin at the start and end of withdrawal. The Japanese are a lot more aware of Topical Steroid Addiction than the UK and USA.
Thanks to these brave people who have been willing to go public about their symptoms and about the dangers of topical steroid creams, many people will be able to see the effects of steroid rebound for themselves. Maybe this will help people to reconsider the opinion that topical steroid creams are safe. If they are safe, then how come patients suffer such extreme symptoms when they try to stop using the creams?
In this video, Tracy explains why he started using steroid creams and what has happened to his skin since he stopped using the creams. Note the similarity between the skin pattern on his arms and the photos that I uploaded onto the blog. The pattern of red arm and white palm is typical of steroid withdrawal.
In this video, we see a brief interview with Dr Marvin Rapaport MD, who has treated over 2000 patients with Red Skin Syndrome and has achieved 100% success rate.
This is an amazing video from Japan charting the progress of someone going through steroid withrawals and showing the complete healing at the end. The pictures at the end of the video compare the skin at the start and end of withdrawal. The Japanese are a lot more aware of Topical Steroid Addiction than the UK and USA.
Thanks to these brave people who have been willing to go public about their symptoms and about the dangers of topical steroid creams, many people will be able to see the effects of steroid rebound for themselves. Maybe this will help people to reconsider the opinion that topical steroid creams are safe. If they are safe, then how come patients suffer such extreme symptoms when they try to stop using the creams?
Wednesday, 14 December 2011
Day 24 Support Circle
My skin seemed to feel a bit more dry and tight today, but I was able to cope and put up with it quite well by getting out of the house and I even managed to go to the cinema with some friends for a couple of hours!
This brings me to the subject of support and the value of having a supportive circle of friends and relatives that you can rely on during the topical steroid withdrawal process. This is not a process that can be undertaken lightly, and the decision to quit using steroids will have a profoud effect on both the sufferer and those connected with them. Family members may have to take on extra tasks in the home, to allow the patient to rest. It may be that the sufferer just needs someone to open their heart to when going through difficult times. Close friends provide comfort and solace during the darkest periods of withdrawal when the sufferer feels that they can no longer cope. Extended family members may be able to help with childcare. Just knowing that these people understand and accept the reasons for stopping steroids and are prepared to help during the healing process, makes things easier on the patient.
I appreciate the help that I have received during the past couple of weeks. The google support group members are amazing, because they are all at various stages of this process and it is great to touch base with people who really understand the impact of this process, both emotionally and physically.
My husband has helped me in a practical way, by taking the kids to school in the mornings when I feel at my worst and doing the odd bit of housework and cooking too. If I didn't have his support, this would be really hard for me to cope with. He is behind my decision 100% and sees the dangers of steroid creams.
My friends have supported me by sending cards, phoning and texting and visiting me. It is wonderful to know that so many people care about my wellbeing. They have also been very understanding about my reasons for quitting the steroids and nobody has said anything mean or judgemental or tried to make me change my mind.
Having a good support network is VITAL during steroid withdrawal. Surrounding yourself with positive people who are up building, rather than critical people who make you doubt yourself, is the key to success in steroid withdrawal.
This brings me to the subject of support and the value of having a supportive circle of friends and relatives that you can rely on during the topical steroid withdrawal process. This is not a process that can be undertaken lightly, and the decision to quit using steroids will have a profoud effect on both the sufferer and those connected with them. Family members may have to take on extra tasks in the home, to allow the patient to rest. It may be that the sufferer just needs someone to open their heart to when going through difficult times. Close friends provide comfort and solace during the darkest periods of withdrawal when the sufferer feels that they can no longer cope. Extended family members may be able to help with childcare. Just knowing that these people understand and accept the reasons for stopping steroids and are prepared to help during the healing process, makes things easier on the patient.
I appreciate the help that I have received during the past couple of weeks. The google support group members are amazing, because they are all at various stages of this process and it is great to touch base with people who really understand the impact of this process, both emotionally and physically.
My husband has helped me in a practical way, by taking the kids to school in the mornings when I feel at my worst and doing the odd bit of housework and cooking too. If I didn't have his support, this would be really hard for me to cope with. He is behind my decision 100% and sees the dangers of steroid creams.
My friends have supported me by sending cards, phoning and texting and visiting me. It is wonderful to know that so many people care about my wellbeing. They have also been very understanding about my reasons for quitting the steroids and nobody has said anything mean or judgemental or tried to make me change my mind.
Having a good support network is VITAL during steroid withdrawal. Surrounding yourself with positive people who are up building, rather than critical people who make you doubt yourself, is the key to success in steroid withdrawal.
Tuesday, 13 December 2011
Day 23 Breaking Isolation
I seem to be getting elements of my normal life back today after 3 weeks in virtual seclusion. I was able to get out of the house, meet with friends and enjoy myself, without being too hung up about the condition of my skin. It was great.
My skin, while far from perfect, is quite settled. The dryness and flaking have subsided significantly, and so has the oozing for the time being. It is no longer difficult for me to turn my head or stretch my arm due to tight skin. My problem neck area is the most improved, but my arms seem slightly worse, but I don't mind so much, as they are easily covered with a long sleeved top, whereas, the neck and face are harder to hide.
I haven't needed to use much emoilient on the skin today. I try to use as little as possible, because the less stuff I put on my skin, the less reactive it will be.
My skin, while far from perfect, is quite settled. The dryness and flaking have subsided significantly, and so has the oozing for the time being. It is no longer difficult for me to turn my head or stretch my arm due to tight skin. My problem neck area is the most improved, but my arms seem slightly worse, but I don't mind so much, as they are easily covered with a long sleeved top, whereas, the neck and face are harder to hide.
I haven't needed to use much emoilient on the skin today. I try to use as little as possible, because the less stuff I put on my skin, the less reactive it will be.
Sunday, 11 December 2011
Day 21 (Photos)
Wow, I can't believe I am now 3 weeks into my withdrawal battle against topical steroid addiction. I thought I would post some progress photos to give a basic idea of where my skin is at right now.
During the withdrawal process, my neck and upper chest have been the worst affected areas, with me waking up to weepy, flaky skin every morning. Last night, I slept with a rolled up towel round my neck to absorb the weeping fluid that I get in my neck crease when I sleep.
In contrast to the photo I uploaded on day 15, you can see that the neck area, though still very red, is not as shiny or angry looking as the previous photo. The red area is also more centralised, with paler areas either side, whereas the whole area was red last week. The area is much less flaky too.I am really hoping that this problem area continues to improve.
Lastly, I am posting this picture to illustrate a phenomenon that Dr Rapaport calls "distant eczema". It is common during steroid withdrawal and happens when you get a small isolated patch of eczemateous skin in an area that may have never suffered eczema before or even had steroids applied to it before. Shortly after I stopped the topical steroid creams, this small red patch appeared by my ankle. I have never had eczema here before. I was so glad that I had read Dr Rapaports article and new that this was a normal sign of steroid withdrawal, and to be expected.
I am very pleased with the improvement in my skin over the last 3 weeks, although I still have a long way to go. I hope to post lots more encouraging photos soon.
Friday, 9 December 2011
Day 19 Shaking and Trembling
My skin is still in quite a calm phase, although it was very very dry and flaky when I woke up, probably the flakiest it has been yet. My morning routine can be quite painful, especially reaching the cereal from the cupboard, as stretching my arm is awkward when the skin inside my elbow crease is so taut.
I had an Epsom bath, but I am trying to bath less often because of compromising my skin barrier. The bath water seemed to lift away the worst of the flaking skin. I then moisturised the whole of the top half of my body as it soon started to tighten again.
My face is generally good, but I have noticed two red lines forming down either side of my nose. I have also scratched a big dent in the top of my nose and my neck, which doesn't look too pretty. The skin seems very thin and even a light scratch can make the skin bleed, especially in the very thin areas.
A worrying development in my withdrawal is the fact that I am shaking a lot. I don't know if it is regular shivering or palpitations, as it seems to be more shaking than shivering, and usually comes on when I am busy doing housework. I try to rest as much as possible and not overdo things in the early stage of withdrawal.
I was meant to see the nurse today about my meds, but I rescheduled the appoinment, as the weather was very cold and rainy and the surgery is a 20 minute walk from my house. I thought the walk would aggravate my skin more. I am now seeing her next month and intend to tell her about my withdrawal and topical steroid addiction.
I had an Epsom bath, but I am trying to bath less often because of compromising my skin barrier. The bath water seemed to lift away the worst of the flaking skin. I then moisturised the whole of the top half of my body as it soon started to tighten again.
My face is generally good, but I have noticed two red lines forming down either side of my nose. I have also scratched a big dent in the top of my nose and my neck, which doesn't look too pretty. The skin seems very thin and even a light scratch can make the skin bleed, especially in the very thin areas.
A worrying development in my withdrawal is the fact that I am shaking a lot. I don't know if it is regular shivering or palpitations, as it seems to be more shaking than shivering, and usually comes on when I am busy doing housework. I try to rest as much as possible and not overdo things in the early stage of withdrawal.
I was meant to see the nurse today about my meds, but I rescheduled the appoinment, as the weather was very cold and rainy and the surgery is a 20 minute walk from my house. I thought the walk would aggravate my skin more. I am now seeing her next month and intend to tell her about my withdrawal and topical steroid addiction.
Thursday, 8 December 2011
Day 18 End of First Flare
My skin has definitely calmed down and I am nearing the end of my first flare since quittting steroids. Last night I managed to sleep in my own bed rather than the setee and my skin was a lot calmer, with less oozing. I know the period between this calm time and the next flare may be brief, so I intend to enjoy it and make the most of it.
This calm time gives me an idea of the potential state that my skin could be in. I see the nurse tomorrow and I will have to tell her that I have come off the steroid creams. I don't know how she is going to react but I am determined to hold my ground. If I give in to the steroid creams I am going back to square 1 and I have no intention of undoing almost 3 weeks work.
Short post, but life is too short to spend tied to a computer...I will save that for my bad skin days!
This calm time gives me an idea of the potential state that my skin could be in. I see the nurse tomorrow and I will have to tell her that I have come off the steroid creams. I don't know how she is going to react but I am determined to hold my ground. If I give in to the steroid creams I am going back to square 1 and I have no intention of undoing almost 3 weeks work.
Short post, but life is too short to spend tied to a computer...I will save that for my bad skin days!
Wednesday, 7 December 2011
Day 17 Hemp Cream Helping
I am now two and a half weeks into withdrawal and my skin is calming down a little. I have taken to sleeping on the setee propped up at night as it seems to prevent the oozing fluid from pooling in my neck and chest areas so badly, although someone from the support group has suggested using a small towel rolled up around my neck for the same purpose.
I'm not sure whether moisturising creams are useful or not. I am currently using the Body Shop hemp cream which is very rich and Skin MD which is a thinner, non greasy lotion. Sometimes I need to moisturise my elbow joints and neck just so I can move properly. I feel a bit like the tin man in wizard of oz that needs oiling all the time! If I can go without moisturisers, I do, because I want my skin to regain the ability to moisturise itself and I feel that adding too much artificial moisture can suppress the natural ability of the skin to produce its own moisture. But for now, emolients are a mainstay for me, as dry, flaky skin is very itchy and I don't want to scratch myself to ribbons.
My neck and chest area tend to flake really badly. The flaking reminds me of that school glue that dries on your fingers and peels off. The skin underneath is soft and new, but it seems premature and I have to be careful to resist the urge to pick off the flakes. I am still getting slight oozing of fluid around my neck and chest areas. The fluid has a slight metallic smell, but if it is trapped where it cannot get air, such as under a bra seam, it can start to smell bad, due to bacteria. Good personal hygiene is vital and I tend to use a mild antibacterial soap on these areas to keep them clean and avoid odour.
I'm not sure whether moisturising creams are useful or not. I am currently using the Body Shop hemp cream which is very rich and Skin MD which is a thinner, non greasy lotion. Sometimes I need to moisturise my elbow joints and neck just so I can move properly. I feel a bit like the tin man in wizard of oz that needs oiling all the time! If I can go without moisturisers, I do, because I want my skin to regain the ability to moisturise itself and I feel that adding too much artificial moisture can suppress the natural ability of the skin to produce its own moisture. But for now, emolients are a mainstay for me, as dry, flaky skin is very itchy and I don't want to scratch myself to ribbons.
My neck and chest area tend to flake really badly. The flaking reminds me of that school glue that dries on your fingers and peels off. The skin underneath is soft and new, but it seems premature and I have to be careful to resist the urge to pick off the flakes. I am still getting slight oozing of fluid around my neck and chest areas. The fluid has a slight metallic smell, but if it is trapped where it cannot get air, such as under a bra seam, it can start to smell bad, due to bacteria. Good personal hygiene is vital and I tend to use a mild antibacterial soap on these areas to keep them clean and avoid odour.
Tuesday, 6 December 2011
Day 16 Don’t Lose Yourself
Today I want to write about how important it is to not lose yourself in this process of steroid withdrawal.
As I have mentioned in previous posts, the rebound effect of coming off topical steroid creams is awful. The skin burns and oozes and the body alternates between shivering with cold and burning up and pouring with sweat. It is very easy to give in to these horrible symptoms and shut down completely, becoming a recluse, partly because of the physical manifestations of this illness but also because of self conciousness about appearance.
I had an experience yesterday which brought this sharply into focus.
I had a particularly bad night, with hardly any sleep and woke up at 5:00 a.m. with raw weeping skin all over my body and bad shivering attacks. I had promised my young daughter that I would attend an event at her school where parents can come in and do craft activities with the children. Every day she had asked me if I was still coming because she knew I was ill. I assured her that I would come even if I felt ill.
Anyway, the morning came and she was really excited about me coming, but I felt rock bottom. I told her I'd had no sleep and showed her my raw skin, explaining that there was no way I could come to school with her. She cried and so did I. I felt awful.
I poured my heart out to the support group and the members were very supportive. One lady suggested that I try to make the effort to go. I creamed myself up, put on clothes that covered my whole body and went for the last hour. When I entered the room, my daughter beamed and said "I knew you would come. I just knew".
The moral of the tale is that sometimes, even if we feel lousy, we need to keep some kind of normal routine to avoid losing a piece of who we are. If I spent every day sitting like a zombie, a slave to my skin, it wouldn't help anyone. I find it best to rest up in the mornings when my skin is feeling the worst and then try and do something "normal" in the afternoons, even if it is going to the shop or for a walk. As I have kids I have to fetch them from school every day, which forces me out of a self induced stupor. A normal routine can really help me to cope mentally. I have no intention of losing who I am or becoming just the "lady with the bad skin".
As I have mentioned in previous posts, the rebound effect of coming off topical steroid creams is awful. The skin burns and oozes and the body alternates between shivering with cold and burning up and pouring with sweat. It is very easy to give in to these horrible symptoms and shut down completely, becoming a recluse, partly because of the physical manifestations of this illness but also because of self conciousness about appearance.
I had an experience yesterday which brought this sharply into focus.
I had a particularly bad night, with hardly any sleep and woke up at 5:00 a.m. with raw weeping skin all over my body and bad shivering attacks. I had promised my young daughter that I would attend an event at her school where parents can come in and do craft activities with the children. Every day she had asked me if I was still coming because she knew I was ill. I assured her that I would come even if I felt ill.
Anyway, the morning came and she was really excited about me coming, but I felt rock bottom. I told her I'd had no sleep and showed her my raw skin, explaining that there was no way I could come to school with her. She cried and so did I. I felt awful.
I poured my heart out to the support group and the members were very supportive. One lady suggested that I try to make the effort to go. I creamed myself up, put on clothes that covered my whole body and went for the last hour. When I entered the room, my daughter beamed and said "I knew you would come. I just knew".
The moral of the tale is that sometimes, even if we feel lousy, we need to keep some kind of normal routine to avoid losing a piece of who we are. If I spent every day sitting like a zombie, a slave to my skin, it wouldn't help anyone. I find it best to rest up in the mornings when my skin is feeling the worst and then try and do something "normal" in the afternoons, even if it is going to the shop or for a walk. As I have kids I have to fetch them from school every day, which forces me out of a self induced stupor. A normal routine can really help me to cope mentally. I have no intention of losing who I am or becoming just the "lady with the bad skin".
Monday, 5 December 2011
Day 15 Full Flare Photos
Wow, now I am into the third week of withdrawal and things have taken another turn for the worst. When I sleep at night, I wake up with soaking wet skin from all the weeping and oozing. My skin cracks and flakes and is completely raw, so I am actually scared to fall asleep. I woke up early this morning and I was immobilized by the wet, raw skin on my neck and chest. It didn't look like skin, it looked like raw bacon.
Anyway, I thought I'd better post some more photos, as a picture tells a thousand words:
My neck is my worst problem area, as this picture clearly shows. I had read about people with this condition having shiny, plastic skin, but I didn't know what they meant until now. The skin is shiny because it has lost so many layers due to the flaking and oozing and this is brand new skin that wasn't quite ready to show itself to the world just yet. The skin is very tight and feels to small for me. I have trouble turning my head as the skin is too tight.
The crook of my arm, as in so many people with topical steroid withdrawal, is red and sore. The skin in this area is also very dry and itchy. When I scratch, I usually have a bit of a frenzy and can't stop. Stretching my arm out is painful and it is hard to reach things high up on a shelf because the skin tightens in the elbow crease.
My right arm, above, shows a pattern very typical of steroid addiction withdrawal. My arm is bright red, but stops at my wrist and my wrist and palm have normal white skin. Alsmost everyone withdrawing from the topical creams has the same skin patterm, which proves that it is not true eczema, but Red Skin Syndrome due to dilated blood vessels that have been messed up my the steroid creams.
The pictures look pretty grim, but I am upbeat and positive that this is a temporary phase and that I will heal completely in time. There are some new posts on the Steroid Addiction Withdrawal support group that show members who have been in the process for several months with much improved skin. Hopefully, I will post similar pictures in the coming months.
Anyway, I thought I'd better post some more photos, as a picture tells a thousand words:
The pictures look pretty grim, but I am upbeat and positive that this is a temporary phase and that I will heal completely in time. There are some new posts on the Steroid Addiction Withdrawal support group that show members who have been in the process for several months with much improved skin. Hopefully, I will post similar pictures in the coming months.
Saturday, 3 December 2011
Day 13 Turning a Corner
I actually feel like I turned a bit of a corner today. The initial flare after stopping the Steroid creams is starting to subside. I am feeling more comfortable and have more energy.
I know from reading the report by Dr Rapaport MD that after withdrawal, the patient can undergo a series of flares, followed by normal skin and then followed by another flare. Total healing can take anywhere between 6 months and 3 years, with the period between flares getting longer.
I am still getting used to trying alternatives to the topical steroids. Some products sting and irritate my skin, whereas some calm my skin. When patients withdraw from steroids, often they cannot tolerate anything on their skin, except for very basic and pure creams such as coconut oil or vaseline. What suits one person may not suit another. I have found epsom salt baths lovely and soothing, and Skin MD naturals shielding lotion seems to suit my skin best, as it is light and non greasy.
I tried the Body Shop Hemp hand cream today for the first time after a friend recommeneded it. Her aunt has come off the steroid creams completetly, and uses the hemp cream as a substitute. There is a lot of anecdotal evidence that shows that hemp seed oil is effective against eczema.
The cream stung on initial application, but was deeply moisturising. I am trying it on my right arm as a test area and I will publish some photos on here shortly to compare my treated arm as opposed to my "control" arm! If I can find effective emolients to replace the steroids, I will stand more chance of healing quickly. My body has a lot of repair work to do.
Sleep is a wonderful healer, but it can often be hard to get enough sleep. Luckily for me I was able to get a good rest last night which seemed to set me up well for the rest of the day.
I know from reading the report by Dr Rapaport MD that after withdrawal, the patient can undergo a series of flares, followed by normal skin and then followed by another flare. Total healing can take anywhere between 6 months and 3 years, with the period between flares getting longer.
I am still getting used to trying alternatives to the topical steroids. Some products sting and irritate my skin, whereas some calm my skin. When patients withdraw from steroids, often they cannot tolerate anything on their skin, except for very basic and pure creams such as coconut oil or vaseline. What suits one person may not suit another. I have found epsom salt baths lovely and soothing, and Skin MD naturals shielding lotion seems to suit my skin best, as it is light and non greasy.
I tried the Body Shop Hemp hand cream today for the first time after a friend recommeneded it. Her aunt has come off the steroid creams completetly, and uses the hemp cream as a substitute. There is a lot of anecdotal evidence that shows that hemp seed oil is effective against eczema.
The cream stung on initial application, but was deeply moisturising. I am trying it on my right arm as a test area and I will publish some photos on here shortly to compare my treated arm as opposed to my "control" arm! If I can find effective emolients to replace the steroids, I will stand more chance of healing quickly. My body has a lot of repair work to do.
Sleep is a wonderful healer, but it can often be hard to get enough sleep. Luckily for me I was able to get a good rest last night which seemed to set me up well for the rest of the day.
Friday, 2 December 2011
Day 12 Flare Photos
I thought I would add a couple of photos to the blog to show the state of my skin at this point:
It is clear from this photo that my skin is very dry and flaky at this point, although the picture does not really show the full extent of the redness, which is quite severe. There are honey-coloured crusts just above and below my mouth where fluid has leaked out of my skin and dried. My skin feels very tight and it is hard to smile and eat. My neck is also very dry, which makes turning my head difficult.
This picture shows the red rash that has spread over my stomach in the first two weeks following the steroid withdrawal. It is a fine red rash, quite spongy in appearance, although thankfully, it is not too itchy.
I currently have bad rashes on my face, neck chest and belly, as well as my elbow crooks and backs of my knees. There is minimal rash on my thighs. The skin on my arms is not particularly red, but very dry.
Obviously, as well as the fact that my skin feels painful and tight, it is also very embarrassing going out in public, because so many people judge on appearance. I am staying home as much as possible, only going out when I have to.
I currently have bad rashes on my face, neck chest and belly, as well as my elbow crooks and backs of my knees. There is minimal rash on my thighs. The skin on my arms is not particularly red, but very dry.
Obviously, as well as the fact that my skin feels painful and tight, it is also very embarrassing going out in public, because so many people judge on appearance. I am staying home as much as possible, only going out when I have to.
Week One:
The first couple of days after quitting steroids were not too bad. Apart from a bit of redness on my face, I did not notice too much difference. On day three though, it was as if the skin suddenly noticed that it wasn't being suppressed any more! The steroids artificially suppress blood vessels and calm inflammation. Without them, my blood vessels were free to go mad, and they did, resulting in redness on my face, neck, chest and elbow crooks. The skin was not itchy, but burned like fire.
When I press on the red skin with my finger, it goes white momentarily. This is further proof that the problem is vascular rather than being "true" eczema, which doesn't react the same way as steroid induced eczema, or red skin syndrome, as it is also called.
By the end of the first week, my sleep patterns were being disrupted, my skin was red and weepy in places and I needed a lot of rest. During this time I felt that epsom salt baths were a real treat, calming my angry skin and helping to slough off excess skin cells, leaving the skin smooth. I used a little 50/50 white soft paraffin/liquid paraffin on my skin, which is basically like very gooey vaseline. It helped a little, but was quite messy and made sleeping a bit uncomfortable.
During this initial withdrawal period, I drew a huge amount of releif by reading the posts on the google group for ones dealing with steroid addiction. They are at various stages of withdrawal, though I am aware that complete withdrawal can take between one to three years.
When I press on the red skin with my finger, it goes white momentarily. This is further proof that the problem is vascular rather than being "true" eczema, which doesn't react the same way as steroid induced eczema, or red skin syndrome, as it is also called.
By the end of the first week, my sleep patterns were being disrupted, my skin was red and weepy in places and I needed a lot of rest. During this time I felt that epsom salt baths were a real treat, calming my angry skin and helping to slough off excess skin cells, leaving the skin smooth. I used a little 50/50 white soft paraffin/liquid paraffin on my skin, which is basically like very gooey vaseline. It helped a little, but was quite messy and made sleeping a bit uncomfortable.
During this initial withdrawal period, I drew a huge amount of releif by reading the posts on the google group for ones dealing with steroid addiction. They are at various stages of withdrawal, though I am aware that complete withdrawal can take between one to three years.
My Story
Hi. I am Louise.
I have had eczema ever since I was a baby, although it was not severe in my childhood and teen years. It was confined mainly to the back of my legs and elbow creases.
In my early 20's my eczema worsened slightly, and for the first time in my life, I had eczema on my face. Eager to nip it in the bud, I started using steroid creams. I began with hydrocortisone, a widely available OTC remedy, but was soon using stronger prescription steroids from my doctor. At first, the steroids helped a lot, but over time, they seemed to be less effective and although I was advised to use them for short periods (i.e five days) I was soon using them daily to keep my skin looking "normal".
Things escalated and I noticed new patches of eczema appearing all over my body. Within a few years I was covered in an eczema rash, something that had never happened to me as a child. I saw dermatologists at the local hospital, who prescribed stronger steroids, as well as wet wrap treatment of steroids under bandages when the eczema peaked during my first pregnancy.
I am now in my mid 30's and have been using the creams for over a decade. When my husband was prescribed a strong steroid for his hands, I "borrowed" it for my face, which was red. It worked really well as it was very potent, but after some time I noticed persistent red patches on my nose which did not respond to the cream.
"Could the steroids be causing this?" I thought.
I googled and searched and eventually found an article on Wikipedia about steroid induced rosacea. This then led me to finding the site that changed everything for me, a website called “Addicted Skin.”The site opened with the words:
I have had eczema ever since I was a baby, although it was not severe in my childhood and teen years. It was confined mainly to the back of my legs and elbow creases.
In my early 20's my eczema worsened slightly, and for the first time in my life, I had eczema on my face. Eager to nip it in the bud, I started using steroid creams. I began with hydrocortisone, a widely available OTC remedy, but was soon using stronger prescription steroids from my doctor. At first, the steroids helped a lot, but over time, they seemed to be less effective and although I was advised to use them for short periods (i.e five days) I was soon using them daily to keep my skin looking "normal".
Things escalated and I noticed new patches of eczema appearing all over my body. Within a few years I was covered in an eczema rash, something that had never happened to me as a child. I saw dermatologists at the local hospital, who prescribed stronger steroids, as well as wet wrap treatment of steroids under bandages when the eczema peaked during my first pregnancy.
I am now in my mid 30's and have been using the creams for over a decade. When my husband was prescribed a strong steroid for his hands, I "borrowed" it for my face, which was red. It worked really well as it was very potent, but after some time I noticed persistent red patches on my nose which did not respond to the cream.
"Could the steroids be causing this?" I thought.
I googled and searched and eventually found an article on Wikipedia about steroid induced rosacea. This then led me to finding the site that changed everything for me, a website called “Addicted Skin.”The site opened with the words:
- Have you been struggling with eczema that has spread and is "untreatable"?
- When you reduce or stop your topical steroids does your skin flare, burn and or turn red?
- Have you been using more and more corticosteroids to control your eczema?
- Do you think you might have rosacea, but you are not sure?
Reading the articles on the site led me to conclude that I was addicted to steroids and needed to stop using them. The "rebound" effect of stopping these creams is dramatic and I am using this blog to record my progress as I wean off the creams.
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