Another good skin day. I'm seeing improvements daily and people are noticing!
Today I wrote to a magazine, hoping they will feature a story on Red Skin Syndrome. We need to educate people about the danger of steroid cream overuse.
I wish the media would publish more info on TSW. I know that a week or so ago, a few itsan members went on the radio to talk about it and also someone managed to get their story printed in an eczema journal. It would be great to be able to go on TV and talk about this in front of thousands of viewers.
I know that the blogs and itsan site reach thousands of people, but I wish that we could do more so that knowledge of TSW was mainstream.
Every day, people slap steroids on their babies and young kids in the belief that these creams will help them. It is so sad that they are not made aware of the dangers of using these creams for extended periods on the skin.
Monday, 30 July 2012
Sunday, 29 July 2012
Day 252 Leaving the ITSAN Forum
I am still continuing to progress nicely. Even the stubborn areas, like my calves and the palms of my hands seem to be drying up and healing. The sun is doing my skin a lot of good.
Today, I decided it is finally time to "cut the umbilical" with the itsan forum.
When I first read about topical steroid addiction back in November of last year, there were very few places you could go to for information. Since itsan.org was formed this year, we suddenly had access to a pile of resources. Lots of wonderful blogs have popped up and we started to compile lists of articles by doctors about TSW. Throughout this time, I have been on the itsan forum every day, interacting with others and sharing experiences, both good and bad. I have put many, many hours into my posts.
I desperately needed the forum. I used it as a crutch, as a lifeline. I knew that if I had doubts or questions, there were kind, welcoming people on the site who could reassure me. I always found it hard to understand why the people who were healed seemed to distance themselves from the forum. But I understand now.
I don't need the forum now. I am healed. It has served a valuable purpose for me, guiding me through a difficult time, but I have survived and come out of the other side. Now it is time to live my life, get out there and enjoy my new skin!
I can't hang around the "sick room". It serves no purpose for me. At worst, it can be pretty depressing having to relive the darkest days of withdrawal over and over again. I have to look ahead, face the future.
I will still remain very much involved with the work of the itsan charity, as I am passionate about what it is trying to accomplish. I am currently working on an exciting itsan project and can't wait to see how it turns out! Hopefully it will help a lot of people. I will also continue to search out medical articles for use on the itsan.org site.
I will pop back to the forums from time to time, to share positive thoughts with those just starting out on steroid withdrawal. My best wishes and warmest thoughts to those going through this difficult time.
Today, I decided it is finally time to "cut the umbilical" with the itsan forum.
When I first read about topical steroid addiction back in November of last year, there were very few places you could go to for information. Since itsan.org was formed this year, we suddenly had access to a pile of resources. Lots of wonderful blogs have popped up and we started to compile lists of articles by doctors about TSW. Throughout this time, I have been on the itsan forum every day, interacting with others and sharing experiences, both good and bad. I have put many, many hours into my posts.
I desperately needed the forum. I used it as a crutch, as a lifeline. I knew that if I had doubts or questions, there were kind, welcoming people on the site who could reassure me. I always found it hard to understand why the people who were healed seemed to distance themselves from the forum. But I understand now.
I don't need the forum now. I am healed. It has served a valuable purpose for me, guiding me through a difficult time, but I have survived and come out of the other side. Now it is time to live my life, get out there and enjoy my new skin!
I can't hang around the "sick room". It serves no purpose for me. At worst, it can be pretty depressing having to relive the darkest days of withdrawal over and over again. I have to look ahead, face the future.
I will still remain very much involved with the work of the itsan charity, as I am passionate about what it is trying to accomplish. I am currently working on an exciting itsan project and can't wait to see how it turns out! Hopefully it will help a lot of people. I will also continue to search out medical articles for use on the itsan.org site.
I will pop back to the forums from time to time, to share positive thoughts with those just starting out on steroid withdrawal. My best wishes and warmest thoughts to those going through this difficult time.
Friday, 27 July 2012
Day 250: Before and after photos
Hey, this must be a bit of a milestone for me! 250 days off the 'roids! Hurrah!
Time for some before and after photos.....
This is my red arm early on in withdrawals.Oooh, sore....!
I hate this old photo of the back of my leg. It reminds me of when my skin was so bad, I could not walk because of the pain in my flexures.
The same leg today (do you know how hard it is to take a photo of the back of your leg?) Very minor rash, no cracking or flaking.
So I would like to throw out this challenge to all those people who do not believe in topical steroid addiction: Look at my pictures and explain what is going on if you can.
If steroids are so useful for treating eczema, how come my skin is almost clear now I have stopped using them?
Steroid induced eczema is curable. I am proof of that. People are waking up to the fact that prolonged use of steroid creams cause an eczema-like rash that is actually worse than the skin condition that it was supposed to treat!
Check out www.itsan.org for more information about steroid induced eczema. How long will it take the medical profession to face the facts about the damage that prolonged use of steroid cream causes? Some experts advise that these creams should be used for no more than 5 days, not for years on end like I did. If you need daily steroid creams to manage your eczema, then face facts: You are addicted.
Time for some before and after photos.....
Oh dear! Look at my poor old blotchy red face in this photo. I was pretty miserable. My face was really puffy too. I had to have my hair tied back because of the oozing and I couldn't stand my hair on my neck.
This is me today! Yay! My face isn't puffy and is actually a normal colour. Bearing in mind that I applied strong creams to this area daily for many years, it has recovered really well. And hey, it only took 250 days!
...and my arm today, all better!
My neck is so red on this photo that it looks like I was glowing.It hurts to look at it.
This is my neck today. Pale again with only a very slight residual rash.
So I would like to throw out this challenge to all those people who do not believe in topical steroid addiction: Look at my pictures and explain what is going on if you can.
If steroids are so useful for treating eczema, how come my skin is almost clear now I have stopped using them?
Steroid induced eczema is curable. I am proof of that. People are waking up to the fact that prolonged use of steroid creams cause an eczema-like rash that is actually worse than the skin condition that it was supposed to treat!
Check out www.itsan.org for more information about steroid induced eczema. How long will it take the medical profession to face the facts about the damage that prolonged use of steroid cream causes? Some experts advise that these creams should be used for no more than 5 days, not for years on end like I did. If you need daily steroid creams to manage your eczema, then face facts: You are addicted.
Tuesday, 24 July 2012
Day 247
Yesterday must have been the hottest day of the year so far in the UK. About time too!
I took advantage of the sun by getting out and about. I was wearing my T-shirt so that I could get some sun on my arms. I noticed that the skin seemed to feel a bit tight when the sun was shining on it, but this effect was short lived.
This morning, I got up and noticed that the stubborn patches on the insides of my arms were fading, which is great, as you probably will have seen the picture I posted a few weeks ago of all the scratch marks down my arm. I think that the insides of the forearms and the insides of the calf flare more because of the blood flow the these areas and the effects of the Nitric oxide in the blood. These are my itchy areas that get clawed in my sleep!
I'm also really happy that the blistering on my palms is nearly gone. I will post some photos when I get chance, but have the kiddies off school at the moment, so I'm time poor. I know a lot of people get the blistering on the hands so I want to offer hope to those suffering that it will end.
I get a ring of dry skin around my mouth in the mornings when I get up, but a quick slick of hemp cream sorts it out. I think the pattern is similar to perioral dermatitis, which doctors acknlowledge as being caused by steroids, so I guess I am just waiting for the few final areas of troubled skin to vanish. The rest of my skin is the best it has been in years.
One of our healed "skin friends" Karen in Australia (I featured her story on this blog previously), has had her story published in the journal for the National Eczema Association in Australia. Many thatnks to Karen for sharing her story and thanks to the NEA for helping to publicise this condition, which so many people mistake for eczmea.
Itsan now have two official press releases, so the information is getting out there slowly!
I took advantage of the sun by getting out and about. I was wearing my T-shirt so that I could get some sun on my arms. I noticed that the skin seemed to feel a bit tight when the sun was shining on it, but this effect was short lived.
This morning, I got up and noticed that the stubborn patches on the insides of my arms were fading, which is great, as you probably will have seen the picture I posted a few weeks ago of all the scratch marks down my arm. I think that the insides of the forearms and the insides of the calf flare more because of the blood flow the these areas and the effects of the Nitric oxide in the blood. These are my itchy areas that get clawed in my sleep!
I'm also really happy that the blistering on my palms is nearly gone. I will post some photos when I get chance, but have the kiddies off school at the moment, so I'm time poor. I know a lot of people get the blistering on the hands so I want to offer hope to those suffering that it will end.
I get a ring of dry skin around my mouth in the mornings when I get up, but a quick slick of hemp cream sorts it out. I think the pattern is similar to perioral dermatitis, which doctors acknlowledge as being caused by steroids, so I guess I am just waiting for the few final areas of troubled skin to vanish. The rest of my skin is the best it has been in years.
One of our healed "skin friends" Karen in Australia (I featured her story on this blog previously), has had her story published in the journal for the National Eczema Association in Australia. Many thatnks to Karen for sharing her story and thanks to the NEA for helping to publicise this condition, which so many people mistake for eczmea.
Itsan now have two official press releases, so the information is getting out there slowly!
Monday, 23 July 2012
Day 246 Important Information About Healing Times
Topical steroid withdrawal is an odd beast, and has us all confused.
This week on the itsan forum, I read a post from a man who was 5 years into withdrawals. His skin had improved tremendously in that time, but wasn't fully healed. I think it got many of us wondering how long this process is actually going to take. The same week, we heard from a lady who is about 10 months in and almost completely healed. It is not uncommon to see people suddenly flaring again after many months of withdrawals and calm skin.
The trouble is, there are so many variables at play here. Firstly, there is the amount of time that steroids were used. Some people have been using steroids all their lives and have 40 or more years of application of steroid creams. This has to affect healing times. Then there are other factors, such as age, skin type, diet, etc. A lady on the forum of African descent healed very quickly and I wonder if this was due to her skin type. Another factor is climate and weather. ITSAN has members all over the world. Some of us live in Australia, I'm in the UK and others live in the US, in areas as diverse as Florida, California, Michigan and New York. We have members in Japan, Singapore, Malaysia and Tunisia. Does the sun help or hinder healing times? What about humidity levels? We are trying to collate our information in a spreadsheet to see if any patterns emerge.
In his papers, Dr Fukaya estimates that healing takes 10-30% of the time that steroid creams were used. In that case, a person who has used steroid for 30 years could, in a worst case scenario, take 9 years to heal completely. It is a scary thought. I used creams for 15 years, so at best I'm looking at just under 2 years and at worst, it could be 5 years. One thing is certain. I will never use steroid creams again.
As for me, 8 months off the creams and I would say I'm 80-90% healed. I have normal skin on my arms and most of my legs, my back and torso. My face is nearly normal colour. My current problem area is my chest, just above my bra-line. Unbelievably, I have started oozing again in this area, which is a real downer for me. I thought the oozing stage was over with. To get it in context though, my skin is pretty good. I'm hoping it will stay that way! It is quite scary to think that a flare could still come at any time. It is a bit like sitting on a time bomb.
This week on the itsan forum, I read a post from a man who was 5 years into withdrawals. His skin had improved tremendously in that time, but wasn't fully healed. I think it got many of us wondering how long this process is actually going to take. The same week, we heard from a lady who is about 10 months in and almost completely healed. It is not uncommon to see people suddenly flaring again after many months of withdrawals and calm skin.
The trouble is, there are so many variables at play here. Firstly, there is the amount of time that steroids were used. Some people have been using steroids all their lives and have 40 or more years of application of steroid creams. This has to affect healing times. Then there are other factors, such as age, skin type, diet, etc. A lady on the forum of African descent healed very quickly and I wonder if this was due to her skin type. Another factor is climate and weather. ITSAN has members all over the world. Some of us live in Australia, I'm in the UK and others live in the US, in areas as diverse as Florida, California, Michigan and New York. We have members in Japan, Singapore, Malaysia and Tunisia. Does the sun help or hinder healing times? What about humidity levels? We are trying to collate our information in a spreadsheet to see if any patterns emerge.
In his papers, Dr Fukaya estimates that healing takes 10-30% of the time that steroid creams were used. In that case, a person who has used steroid for 30 years could, in a worst case scenario, take 9 years to heal completely. It is a scary thought. I used creams for 15 years, so at best I'm looking at just under 2 years and at worst, it could be 5 years. One thing is certain. I will never use steroid creams again.
As for me, 8 months off the creams and I would say I'm 80-90% healed. I have normal skin on my arms and most of my legs, my back and torso. My face is nearly normal colour. My current problem area is my chest, just above my bra-line. Unbelievably, I have started oozing again in this area, which is a real downer for me. I thought the oozing stage was over with. To get it in context though, my skin is pretty good. I'm hoping it will stay that way! It is quite scary to think that a flare could still come at any time. It is a bit like sitting on a time bomb.
Sunday, 22 July 2012
Day 245 Diet and TSW
The sun has actually come out! After weeks of horrendous rain here in the UK, we finally have some sun, so I am keen to get some on my skin. Dr Rapaport says that sun on the skin can speed up healing, but only in the later stages of withdrawal. I figure that now I have 8 months of TSW under my belt, I classify as in the "later stages". Too much sun can flare people in the early stages on steroid cream withdrawal.
I was reading a positive post from another "skin friend" who has seen amazing healing in her skin after spending 4 hours in the sunshine. I am so happy for her. This is a long process and it is nice to see some light (literally) at the end of the tunnel.
Over on the itsan forum, we have been debating various aspects of TSW. One of the most interesting debates of late was about diet. Can changing diet improve or worsen TSW?
Everyone has a different approach and a different take on the subject. As so little is still known about the mechanism of steroid withdrawal, I cannot say whether any single approach is best. One thing is absolutely certain; a balanced diet is best for long term health. But does it affect healing time? Well, to be honest, I haven't done anything special diet-wise since I stopped using steroid creams. In the initial withdrawal stages, I got very hungry and craved sweet foods, so ate virtually non-stop the whole time. I think that maybe my body was craving "building blocks" to rebuild my skin! The combination of the high-energy foods and the fact that I was stuck on the sofa meant that I put on half a stone rather quickly.
I am a lot more active now, so hope to shift the weight. My diet is balanced, I eat food from all of the food groups and plenty of lovely fruit and veggies, but I don't deny myself treats either. I eat chocolate and sweets as treats and also indulge in crisps and chips sometimes. I drink tea and coffee throughout the day in addition to my dandelion and herbal teas. I drink fruit juice, but also buy squash with sweeteners. None of these things make me flare. I do avoid alcohol, as it it a potent vasodilator. If it makes normal people flush, it isn't going to benefit my skin.
One dietary factor that I do actually believe to be important is protein.Studies of patients withdrawing from steroid creams have shown that a high protein diet aids healing, as protein is a building block for the body.
In my experience, there is no need for steroid withdrawal to be an expensive. I just stopped using the creams, which actually saved me money, as I wasn't paying out for prescriptions. I do not fork out wads of cash on "magic creams", in fact, at the moment, I use very little moisturiser. I eat the same food, do the same things and try to get on with my life with as little disruption from TSW as possible.
And I am healing, so it must be working.
I was reading a positive post from another "skin friend" who has seen amazing healing in her skin after spending 4 hours in the sunshine. I am so happy for her. This is a long process and it is nice to see some light (literally) at the end of the tunnel.
Over on the itsan forum, we have been debating various aspects of TSW. One of the most interesting debates of late was about diet. Can changing diet improve or worsen TSW?
Everyone has a different approach and a different take on the subject. As so little is still known about the mechanism of steroid withdrawal, I cannot say whether any single approach is best. One thing is absolutely certain; a balanced diet is best for long term health. But does it affect healing time? Well, to be honest, I haven't done anything special diet-wise since I stopped using steroid creams. In the initial withdrawal stages, I got very hungry and craved sweet foods, so ate virtually non-stop the whole time. I think that maybe my body was craving "building blocks" to rebuild my skin! The combination of the high-energy foods and the fact that I was stuck on the sofa meant that I put on half a stone rather quickly.
I am a lot more active now, so hope to shift the weight. My diet is balanced, I eat food from all of the food groups and plenty of lovely fruit and veggies, but I don't deny myself treats either. I eat chocolate and sweets as treats and also indulge in crisps and chips sometimes. I drink tea and coffee throughout the day in addition to my dandelion and herbal teas. I drink fruit juice, but also buy squash with sweeteners. None of these things make me flare. I do avoid alcohol, as it it a potent vasodilator. If it makes normal people flush, it isn't going to benefit my skin.
One dietary factor that I do actually believe to be important is protein.Studies of patients withdrawing from steroid creams have shown that a high protein diet aids healing, as protein is a building block for the body.
In my experience, there is no need for steroid withdrawal to be an expensive. I just stopped using the creams, which actually saved me money, as I wasn't paying out for prescriptions. I do not fork out wads of cash on "magic creams", in fact, at the moment, I use very little moisturiser. I eat the same food, do the same things and try to get on with my life with as little disruption from TSW as possible.
And I am healing, so it must be working.
Wednesday, 18 July 2012
Day 241 Dr Rapaport
I feel quite frustrated today. Not with my skin, which, as you can see from the photos is looking great, but from the attitude that many dermatologists seem to display about this condition.
It seems that dermatologists are indoctrinated with the idea that steroids are a cure-all, a magical panacea for inflamed skin disorders. Apply a little steroid and all your problems will go away....
Because doctors are highly educated people, many lack the humility to acknowledge the possibility that they could be wrong. When faced with the idea that steroid creams could be addictive, many just bury their heads in the sand and refuse to look at the facts. I have hears of cases where people have taken copies of Dr Rapaports papers in to their doctor, only to have the doctor ignore the papers, or throw them across the room, dismissing them as quackery before they have even read them.
Interestingly, even the good doctor himself, Dr Rapaport had problems convincing his fellow dermatologists about steroid cream addiction. Since he wrote his paper, he has only managed to convince 10 doctors in the last 10 years. Dr Fukaya also had the same problem. He was ridiculed by fellow dermatologists, so much so that for a time he discontinued his work treating steroid addicted patients.
A member of the itsan forum recently wrote to his dermatologist, explaining the science behind TSA and explaining that he felt that the creams were the cause, rather than the cure of his skin problem. She replied by saying that the reason his skin was flaring was because he needed the creams and his eczema was getting out of control without them. He replied by explaining that if this were simply a flare of eczema, his skin would be getting worse, but as things stood, his skin was actually improving since he ceased steroids. How could the dermatologist explain that? I would love her to take a look at my improvement photos on this blog and come up with some kind of explanation.
The truth is that the "red people" as Dr Rapaport calls us, are like salmon (red salmon!), swimming against the tide. Just remember, in the past, most people thought the earth was flat. Just because "most people" believe something to be the case does not make it so. I believe that the truth about the long term effects of steroid creams will come out eventually and derms will be forced to rethink their approach. Unfortunately, I think that time is a long way in the future and sadly, many kids and adults will have to suffer needlessly first.
It seems that dermatologists are indoctrinated with the idea that steroids are a cure-all, a magical panacea for inflamed skin disorders. Apply a little steroid and all your problems will go away....
Because doctors are highly educated people, many lack the humility to acknowledge the possibility that they could be wrong. When faced with the idea that steroid creams could be addictive, many just bury their heads in the sand and refuse to look at the facts. I have hears of cases where people have taken copies of Dr Rapaports papers in to their doctor, only to have the doctor ignore the papers, or throw them across the room, dismissing them as quackery before they have even read them.
Interestingly, even the good doctor himself, Dr Rapaport had problems convincing his fellow dermatologists about steroid cream addiction. Since he wrote his paper, he has only managed to convince 10 doctors in the last 10 years. Dr Fukaya also had the same problem. He was ridiculed by fellow dermatologists, so much so that for a time he discontinued his work treating steroid addicted patients.
A member of the itsan forum recently wrote to his dermatologist, explaining the science behind TSA and explaining that he felt that the creams were the cause, rather than the cure of his skin problem. She replied by saying that the reason his skin was flaring was because he needed the creams and his eczema was getting out of control without them. He replied by explaining that if this were simply a flare of eczema, his skin would be getting worse, but as things stood, his skin was actually improving since he ceased steroids. How could the dermatologist explain that? I would love her to take a look at my improvement photos on this blog and come up with some kind of explanation.
The truth is that the "red people" as Dr Rapaport calls us, are like salmon (red salmon!), swimming against the tide. Just remember, in the past, most people thought the earth was flat. Just because "most people" believe something to be the case does not make it so. I believe that the truth about the long term effects of steroid creams will come out eventually and derms will be forced to rethink their approach. Unfortunately, I think that time is a long way in the future and sadly, many kids and adults will have to suffer needlessly first.
Tuesday, 17 July 2012
Day 240 (photos)
I thought I'd post a couple of progress photos on here to show you how I am getting on.
You can see that my arm is also a normal colour. This is the first time I have seen the normal colour of my skin in years! I have been red for so long!
My skin is in good condition. It is very soft and smooth. I get a little dryness here and there and I still seem to leave little piles of skin everywhere I go, but it is better than being red, juicy and oozy. The dryness is improving though, because I only need to moisturise round my mouth and in the crooks of my arms. The rest of my skin seems to make its own oils. In fact, the tops of my arms, back and tops of my legs are all perfect skin. I just need the rest of me to catch up!
I am so glad I embarked on this TSW journey. I am now in no doubt at all that overuse of topical steroids caused my rebound eczema and whole-body redness. Eczema should not cover the whole body. if someone has eczema all over their body then it is likely due to overuse of steroid creams.
We are hearing more and more stories from people who are now completely healed. I was reading an experience on the itsan forum from a lady who healed in a matter of months and now has normal skin. These numbers will continue to increase as more people find ITSAN .
In this photo, you can see that my face is returning to its normal colour. Yes, I have slight pink blotching, but the difference in colour is amazing. I can't believe how far I have come. I don't need to tie my hair back anymore and I only need to apply a little moisturiser once a day. The oozing has stopped and the skin on my face is smooth. This can only get better as the months go by.
My skin is in good condition. It is very soft and smooth. I get a little dryness here and there and I still seem to leave little piles of skin everywhere I go, but it is better than being red, juicy and oozy. The dryness is improving though, because I only need to moisturise round my mouth and in the crooks of my arms. The rest of my skin seems to make its own oils. In fact, the tops of my arms, back and tops of my legs are all perfect skin. I just need the rest of me to catch up!
I am so glad I embarked on this TSW journey. I am now in no doubt at all that overuse of topical steroids caused my rebound eczema and whole-body redness. Eczema should not cover the whole body. if someone has eczema all over their body then it is likely due to overuse of steroid creams.
We are hearing more and more stories from people who are now completely healed. I was reading an experience on the itsan forum from a lady who healed in a matter of months and now has normal skin. These numbers will continue to increase as more people find ITSAN .
Thursday, 12 July 2012
Day 235 Micro Flare
I think I'm having a micro-flare!
It's a bit like a mini-flare, only milder. My skin has been a bit more pink over the last few days and I have had a little more dryness on my face and arms.
It can be easy to view blips like this as a step backward, but I view any change in the skin as a step forward. After all, it means that the skin is doing something. It is not standing still. It is changing.
So what if it is dry? It is just the old skin sloughing off. There is nice new skin underneath.
So what if it is pink? It is just a sign that the blood vessels still have relatively high Nitric oxide levels and that I'm not cured yet, but after each flare, there is calm, and I'm looking forward to the improvements that the next calm session brings. I have said before that it is best to view flares like a necessary dose of medicine, unpleasant, but needed for a complete cure.
I am grateful that the flares are mild. It is hard to remember how things were at the start, but then I might read a comment on the itsan forum from someone who has just started withdrawals and it all comes flooding back.
I have come a long way.
Sometimes I see comments from people who are a couple of months into withdrawal and they feel like they can't go on. I was like that too.
It is amazing what the human body and mind can put up with when it has to. We are stronger than we think.
It's a bit like a mini-flare, only milder. My skin has been a bit more pink over the last few days and I have had a little more dryness on my face and arms.
It can be easy to view blips like this as a step backward, but I view any change in the skin as a step forward. After all, it means that the skin is doing something. It is not standing still. It is changing.
So what if it is dry? It is just the old skin sloughing off. There is nice new skin underneath.
So what if it is pink? It is just a sign that the blood vessels still have relatively high Nitric oxide levels and that I'm not cured yet, but after each flare, there is calm, and I'm looking forward to the improvements that the next calm session brings. I have said before that it is best to view flares like a necessary dose of medicine, unpleasant, but needed for a complete cure.
I am grateful that the flares are mild. It is hard to remember how things were at the start, but then I might read a comment on the itsan forum from someone who has just started withdrawals and it all comes flooding back.
I have come a long way.
Sometimes I see comments from people who are a couple of months into withdrawal and they feel like they can't go on. I was like that too.
It is amazing what the human body and mind can put up with when it has to. We are stronger than we think.
Tuesday, 10 July 2012
Day 233 Scientific Evidence For TSW
My skin is still pretty good, although my scalp seems very itchy! Someone commented today on how good my skin looks since I quit steroids, which was a nice confidence booster.
Some people claim that the evidence, or science behind Red Skin Syndrome and topical steroid addiction is scant. I do not believe this to be true. Since by steroid journey started, I have found many articles from sites all around the world that show that TSA is very real. I feel that these articles need to be collected and put together in one place for reference.
Pubmed are a good source of articles by doctors and dermatologists on steroid addiction. Check this one out for example:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1982750/
Scientists have been writing about steroid rebound for years. Why do so many choose to ignore the evidence?
Some people claim that the evidence, or science behind Red Skin Syndrome and topical steroid addiction is scant. I do not believe this to be true. Since by steroid journey started, I have found many articles from sites all around the world that show that TSA is very real. I feel that these articles need to be collected and put together in one place for reference.
Pubmed are a good source of articles by doctors and dermatologists on steroid addiction. Check this one out for example:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1982750/
Scientists have been writing about steroid rebound for years. Why do so many choose to ignore the evidence?
Monday, 9 July 2012
Day 232 Dr Fukaya
Dr Mototsugu Fukaya, one of the leading experts on steroid addiction has started to post videos on Youtube explaining his hypothesis as to why steroid addiction happens. It is a bit over my head, but it is good for people such as doctors and dermatologists to watch and form their own opinions.
So...as the ad goes, here comes the "science bit"....
I liked the fact that Dr Fukaya seems to think that the rebound phenomenon only occurs with topical steroids applied to the skin, rather than the inhaled or oral versions.
This is a relief to me, because I am still using a steroid inhaler for my asthma, and wondered how it would impact on my overall healing time, but the doctor seems to indicate that it won't affect my skin and that I will not become addicted to the inhaler. I'm down to one puff a day anyway, so I am not overly worried.
I am very glad that Dr Fukaya has resumed his research into the mechanism of steroid addiction. Maybe this will lead to some kind of treatment that will result in shorter withdrawal times for patients. I am confident that in years to come, the medical profession will come to acknowledge the existence of topical steroid addiction and learn to treat it effectively, rather that resorting to steroid creams as the first line of treatment for eczema.
I also hope that the research leads to better labelling of steroid creams. Tiny print on a leaflet inside a tube of hydrocortisone is not really going to convince the patient to stop using the cream after 5 days. It needs to be printed in big letters on the front of the tube:
Now that would grab people's attention.
So...as the ad goes, here comes the "science bit"....
This is a relief to me, because I am still using a steroid inhaler for my asthma, and wondered how it would impact on my overall healing time, but the doctor seems to indicate that it won't affect my skin and that I will not become addicted to the inhaler. I'm down to one puff a day anyway, so I am not overly worried.
I am very glad that Dr Fukaya has resumed his research into the mechanism of steroid addiction. Maybe this will lead to some kind of treatment that will result in shorter withdrawal times for patients. I am confident that in years to come, the medical profession will come to acknowledge the existence of topical steroid addiction and learn to treat it effectively, rather that resorting to steroid creams as the first line of treatment for eczema.
I also hope that the research leads to better labelling of steroid creams. Tiny print on a leaflet inside a tube of hydrocortisone is not really going to convince the patient to stop using the cream after 5 days. It needs to be printed in big letters on the front of the tube:
DO NOT USE THIS CREAM FOR MORE THAN 5 DAYS
Now that would grab people's attention.
Saturday, 7 July 2012
Day 230 Tips for Starting TSW
On my last post, I had a comment from a guy called Jason, who has just started his own blog:
http://itchyred.blogspot.com/
He has just stopped using steroid cream and wanted me to give a brief rundown of what works best for me. I know I have mentioned it before, but this blog is getting pretty big now and it is easy to lose stuff, so here's a recap for all the newbies......
Hopefully, you have an understanding doctor or dermatologist who can help you through this, although some of us unfortunately have to do this with very little support. Very few doctors understand the facts about TSW, although this is slowly changing, thanks to ITSAN and dedicated experts such as Dr Rapaport, Dr Fukaya and Dr Sato, who have led the way in changing opinion in the medical field. ITSAN is compiling a list of TSW-friendly doctors, so there may be one near you.
You will likely be disabled for a while. Don't think I am exaggerating. As soon as you stop the creams, the body senses the drop in cortisone and the adrenals have to work really hard to make up the shortfall. This can result in intense tiredness and weird symptoms like chills. In addition to this, your skin will probably get "angry" due to the buildup up Nitric Oxide, a potent vasodilator, so expect red, oozy skin. If you are affected this way, try to book a few weeks off work if you can, because this is going to take a lot out of you. Parents with kids, please consider getting as much help as you can. In the early days, my husband had to take the kids to school and do the housework, because I was so ill.
Educate yourself. Itsan.org is full of resources. Read all of the medical articles and print them off to show your doctor and friends. Read all the blogs (listed on the right of the page) and follow the threads on the itsan forum. Listen to the recorded teleconferences with Dr Rapaport which explain very simply why we flare like this when we stop the steroids and why we can be confident that we will heal.
You have to find your own preferred method of getting relief. Some people like cold compresses, like ice packs, whereas others like heat. Find comfortable, loose clothing that does not irritate you. Cotton pyjamas are good whilst at home. Find something to put over your hands at night to stop yourself scratching and make sure to take an antihistamine before bed.
Find a moisturiser that suits YOU. I like Hemp hand protector from the Body Shop, but it irritates some people. Some like coconut oil, Vaseline, palm shortening or other products. You have to find the one that suits your skin and only use it sparingly; Doctor Fukaya says apply for movement, never for a cure. In other words, use as little moisturiser as you can get away with. Large amounts will irritate you.
Invest in a silk pillowcase. They are very cooling on the skin at night and can be wrapped around oozy areas like the neck.
For swollen limbs, keep legs elevated above heart level. try and rest as much as possible.
I liked to have an epsom salt bath every day in the early stages. Others like to use oatmeal in the bath. Again, whatever suits you. Some people don't like baths, but I got a lot of relief from bathing daily.
As for flares, avoid alcohol like the plague, it is very bad for flareups. I also think that stress flares the skin more too, so try and stay calm. A nice relaxing herbal tea containing valerian should help.
Enjoy the good days. You will get a break between flares so make the most of them.
I hope this helps. I wish you the best Jason and all the other newbie steroid quitters.
http://itchyred.blogspot.com/
He has just stopped using steroid cream and wanted me to give a brief rundown of what works best for me. I know I have mentioned it before, but this blog is getting pretty big now and it is easy to lose stuff, so here's a recap for all the newbies......
Hopefully, you have an understanding doctor or dermatologist who can help you through this, although some of us unfortunately have to do this with very little support. Very few doctors understand the facts about TSW, although this is slowly changing, thanks to ITSAN and dedicated experts such as Dr Rapaport, Dr Fukaya and Dr Sato, who have led the way in changing opinion in the medical field. ITSAN is compiling a list of TSW-friendly doctors, so there may be one near you.
You will likely be disabled for a while. Don't think I am exaggerating. As soon as you stop the creams, the body senses the drop in cortisone and the adrenals have to work really hard to make up the shortfall. This can result in intense tiredness and weird symptoms like chills. In addition to this, your skin will probably get "angry" due to the buildup up Nitric Oxide, a potent vasodilator, so expect red, oozy skin. If you are affected this way, try to book a few weeks off work if you can, because this is going to take a lot out of you. Parents with kids, please consider getting as much help as you can. In the early days, my husband had to take the kids to school and do the housework, because I was so ill.
Educate yourself. Itsan.org is full of resources. Read all of the medical articles and print them off to show your doctor and friends. Read all the blogs (listed on the right of the page) and follow the threads on the itsan forum. Listen to the recorded teleconferences with Dr Rapaport which explain very simply why we flare like this when we stop the steroids and why we can be confident that we will heal.
You have to find your own preferred method of getting relief. Some people like cold compresses, like ice packs, whereas others like heat. Find comfortable, loose clothing that does not irritate you. Cotton pyjamas are good whilst at home. Find something to put over your hands at night to stop yourself scratching and make sure to take an antihistamine before bed.
Find a moisturiser that suits YOU. I like Hemp hand protector from the Body Shop, but it irritates some people. Some like coconut oil, Vaseline, palm shortening or other products. You have to find the one that suits your skin and only use it sparingly; Doctor Fukaya says apply for movement, never for a cure. In other words, use as little moisturiser as you can get away with. Large amounts will irritate you.
Invest in a silk pillowcase. They are very cooling on the skin at night and can be wrapped around oozy areas like the neck.
For swollen limbs, keep legs elevated above heart level. try and rest as much as possible.
I liked to have an epsom salt bath every day in the early stages. Others like to use oatmeal in the bath. Again, whatever suits you. Some people don't like baths, but I got a lot of relief from bathing daily.
As for flares, avoid alcohol like the plague, it is very bad for flareups. I also think that stress flares the skin more too, so try and stay calm. A nice relaxing herbal tea containing valerian should help.
Enjoy the good days. You will get a break between flares so make the most of them.
I hope this helps. I wish you the best Jason and all the other newbie steroid quitters.
Thursday, 5 July 2012
Day 228 Eco Friendly Cleaning
These days, I feel like I am just a few steps away from completely normal skin, but can never quite get there.
The skin has settled into a pretty calm phase all over. my face is calm, but still pink and my skin is nice and soft all over. I am definitely flaking less and leaving less piles of skin round the place!
Why can't I just jump the final hurdle? Maybe I am being greedy, but I really want my skin to be completely normal. This healing process is so mind-numbingly slow, it hurts.
A fellow TSW warrior, Karen, is a couple of month ahead of me and is now healed, so maybe I will follow suit and have perfect skin in a few months from now.
I think with this thing that you have to let your body just get on with it. The body knows best. many people try to speed up healing time using various methods, but maybe these methods actually slow down healing. The true healers are rest, water and a balanced diet.
I am trying to reduce the amounts of allergens in my home by using eco friendly cleaning products, rather than detergents and chemicals. I hope that this will put less stress on my skin and lungs and also help my daughter, who gets little patches of eczema on her neck and arms. I tried a new floor cleaner today called method wood for good. It smells like almond, so now my floor smells like marzipan. Yum.
The skin has settled into a pretty calm phase all over. my face is calm, but still pink and my skin is nice and soft all over. I am definitely flaking less and leaving less piles of skin round the place!
Why can't I just jump the final hurdle? Maybe I am being greedy, but I really want my skin to be completely normal. This healing process is so mind-numbingly slow, it hurts.
A fellow TSW warrior, Karen, is a couple of month ahead of me and is now healed, so maybe I will follow suit and have perfect skin in a few months from now.
I think with this thing that you have to let your body just get on with it. The body knows best. many people try to speed up healing time using various methods, but maybe these methods actually slow down healing. The true healers are rest, water and a balanced diet.
I am trying to reduce the amounts of allergens in my home by using eco friendly cleaning products, rather than detergents and chemicals. I hope that this will put less stress on my skin and lungs and also help my daughter, who gets little patches of eczema on her neck and arms. I tried a new floor cleaner today called method wood for good. It smells like almond, so now my floor smells like marzipan. Yum.
Wednesday, 4 July 2012
A-Z of Corticosteroid Withdrawal: Quiet Periods
Q is for Quiet Periods
Quiet periods are the breaks in between flares.
The good bits.
The process of TSW is different for everyone, buy many of us have a series of flares which involve a red, juicy phase, followed by a dry shedding phase and a period of calm skin.
I remember the first time it happened to me. I had been off the creams for about 3 weeks and had been flaring constantly and then all of a sudden I got a one-day break.
I was flaring the day after, but the break was heavenly. Over time, the flares got shorter and the breaks got longer.
Every time your skin gets a break, you hope it will be the last one, that you will never flare again. It can be really disheartening when, after a long break of a week or so, your skin suddenly flares again for no reason. it feels like three steps forward and two steps back.
Here are some comments from the good folk on the itsan forum about breaks between flares:
"Sometimes it feels like walking through the pitch dark and waiting for something to jump out at you. I am hopeful, but I still find myself waiting for the next flare up each time things calm down a bit. I guess it's just natural. However, having all of you around to talk to makes a big difference to me, and just accepting that this is the way it is also helps. "
"Remission is a weird one, this is such a slow process, I think it's often hard to tell. Sometimes people post pics and they are obviously much better to the group, and yet they feel like they're as bad as ever. To me, signs include, umm...
When the skin *looks* less red for a significant amount of time - not just a few minutes. Sometimes these days my face can be a really sallow colour that I don't ever remember it being before - it was always just pink.
Inflammation disappears, so the skin isn't hard and white when you press it - eg like what you see when you flex your wrists/fingers (if you're effected there) This is great, as the itch generally settles down too.
For me, pimples definitely crop up when my skin is about to settle down. I see it that all the inflammatory cells are done and dying, and the body is finally prepairing to get rid of them.
Shedding is an obvious one, but I'd say that's more end of a flare rather than the sign of a true period of quiet.
I think the best sign that you're in remission is that your skin doesn't consume our every waking moment, and you can stop thinking about it 24/7 Best feeling ever!"
In conclusion, quiet periods between flares are great, but it can put you on a real downer when the flares come back again. Sometimes you hear of people who have healed completely and then suddenly, after several years of good skin, they can have a random flare. I guess all of use TSW people live in fear that we may flare again at some point. It is always in the back of our mind.
Quiet periods are the breaks in between flares.
The good bits.
The process of TSW is different for everyone, buy many of us have a series of flares which involve a red, juicy phase, followed by a dry shedding phase and a period of calm skin.
I remember the first time it happened to me. I had been off the creams for about 3 weeks and had been flaring constantly and then all of a sudden I got a one-day break.
I was flaring the day after, but the break was heavenly. Over time, the flares got shorter and the breaks got longer.
Every time your skin gets a break, you hope it will be the last one, that you will never flare again. It can be really disheartening when, after a long break of a week or so, your skin suddenly flares again for no reason. it feels like three steps forward and two steps back.
Here are some comments from the good folk on the itsan forum about breaks between flares:
"Sometimes it feels like walking through the pitch dark and waiting for something to jump out at you. I am hopeful, but I still find myself waiting for the next flare up each time things calm down a bit. I guess it's just natural. However, having all of you around to talk to makes a big difference to me, and just accepting that this is the way it is also helps. "
"Remission is a weird one, this is such a slow process, I think it's often hard to tell. Sometimes people post pics and they are obviously much better to the group, and yet they feel like they're as bad as ever. To me, signs include, umm...
When the skin *looks* less red for a significant amount of time - not just a few minutes. Sometimes these days my face can be a really sallow colour that I don't ever remember it being before - it was always just pink.
Inflammation disappears, so the skin isn't hard and white when you press it - eg like what you see when you flex your wrists/fingers (if you're effected there) This is great, as the itch generally settles down too.
For me, pimples definitely crop up when my skin is about to settle down. I see it that all the inflammatory cells are done and dying, and the body is finally prepairing to get rid of them.
Shedding is an obvious one, but I'd say that's more end of a flare rather than the sign of a true period of quiet.
I think the best sign that you're in remission is that your skin doesn't consume our every waking moment, and you can stop thinking about it 24/7 Best feeling ever!"
In conclusion, quiet periods between flares are great, but it can put you on a real downer when the flares come back again. Sometimes you hear of people who have healed completely and then suddenly, after several years of good skin, they can have a random flare. I guess all of use TSW people live in fear that we may flare again at some point. It is always in the back of our mind.
Monday, 2 July 2012
Day 225 Skin Everywhere
My son just knocked the computer keyboard off the desk.
When I picked it up, there was a pile of white skin flakes all over the floor.
I turned the keyboard over, gave it a tap and more and more dead skin fell out.
I guess that's what happens when you blog during steroid withdrawal!
I am thinking of investing in a white computer keyboard!
Sorry if I grossed anyone out, or if I have put anyone off their dinner.
When I picked it up, there was a pile of white skin flakes all over the floor.
I turned the keyboard over, gave it a tap and more and more dead skin fell out.
I guess that's what happens when you blog during steroid withdrawal!
I am thinking of investing in a white computer keyboard!
Sorry if I grossed anyone out, or if I have put anyone off their dinner.
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