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.
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