Flare 4 is here and I am having a big problem with oozing skin.
Basically, there are two types of oozing with topical corticosteroid withdrawal. The first type is clear coloured and more like sticky sweat. It accumulates in skin folds when you are sitting or lying down and when exposed to air it dries very quickly, leaving flaky skin behind.
The other type of ooze is nasty. It is yellow in colour and dries hard on the skin. it appears in areas where the skin is very badly damaged. This is the type of ooze that I currently have on my legs and the danger is that it can easily get infected. I am trying to dry it up by dabbing affected areas with calamine lotion, although the ooze still seems to be coming through a bit.
Dr Rapaport suggests treating oozing areas with Domeboro solution, but this is not available where I live in the UK.
Wet compresses are also a useful treatment for wet, oozing and weepy eczema skin.
The flare isn't as intense as flare number 3, but the oozing is pretty bad and I feel like a tree oozing sap. I have some areas of good skin, but my neck has flared badly again and my legs are bad all over.
I can't do much other than keep dabbing the bad areas with calamine and sitting it out until it is over.
This blog follows my journey as I quit topical steroids for my eczema. I will chart my observations during the weeks that follow. The blog is not intended to give medical advice. If you are concerned about a medical condition you should consult a doctor for advice.
Monday, 30 January 2012
Friday, 27 January 2012
Day 68 Flare After Cooking
After a good day yesterday, I experienced a "mini flare" on the evening. I sometimes get this, when I have been busy cooking and I wonder if it is brought on by the heat of the kitchen. By 6:00 p.m. my skin was quite red and I was desperate to get into the bath as soon as possible.
My skin was a bit wet during the night, particularly in the elbow creases, backs of my legs and my chest area, I put a silk scarf around my neck and tucked it into my bra to absorb the ooze.This morning I woke up feeling a little bit sore and stinging. My skin still looks OK, but I am a bit worried that I may be slowly heading towards my next flare over the weekend.
It is really good to see the amount of new people joining the Google support group and taking steps to break free of steroid addiction. We have had many uplifting stories recently, of people who are close to being completely healed after many months of withdrawal. These stories give me a lot of hope.
It is sad the people with Red Skin Syndrome face a lot of ignorance from doctors. People assume that you have eczema because you stopped steroids. This is not true. The rash is not eczema! It is the blood vessels dilating in response to the steroid withdrawal. When I had eczema as a child, it was nothing like this.
My skin was a bit wet during the night, particularly in the elbow creases, backs of my legs and my chest area, I put a silk scarf around my neck and tucked it into my bra to absorb the ooze.This morning I woke up feeling a little bit sore and stinging. My skin still looks OK, but I am a bit worried that I may be slowly heading towards my next flare over the weekend.
It is really good to see the amount of new people joining the Google support group and taking steps to break free of steroid addiction. We have had many uplifting stories recently, of people who are close to being completely healed after many months of withdrawal. These stories give me a lot of hope.
It is sad the people with Red Skin Syndrome face a lot of ignorance from doctors. People assume that you have eczema because you stopped steroids. This is not true. The rash is not eczema! It is the blood vessels dilating in response to the steroid withdrawal. When I had eczema as a child, it was nothing like this.
Thursday, 26 January 2012
Day 67 (photos)
I am still feeling well and I think that my skin continues to improve. It certainly feels more supple and flexible and has lost a lot of the stiffness and dryness that made life uncomfortable. It feels like healing is talking place within the deep skin layers.
I am flaking less, but some areas are stiill a bit flaky, and it seems like the skin is renewing itself every day.
I am posting some more photos today, as I feel like there is abig difference between my skin today and yesterday, although I am not sure how apparent it will be in the photos as it is hard to get the same level of lighting to show the colour of the skin.
If you compare this photo of my arm with the one I took a few days ago, the skin looks a lot smoother and it has lost the dry, wrinkly appearance. It is still a little bit pink, and the skin is not normal yet, but it is heading in the right direction. I am hoping that when we get some sunshine in a few months time, I can bare my arms and it will help them to heal as DR Rapaport is a big advocate of sunlight as a healer.
I am so glad I can now actually see white skin on my neck! This is SO much better than the first photo I took of my neck at the start of withdrawal, when the whole area was bright red and shiny. Now there is just a small pink blotchy area. I am very hopeful that this will improve over the next few months, and I am really glad it has stopped oozing.
My leg looks completely different to yesterday's photo. It still looks sore, but it does feel better and I do think it is healing. I can walk a bit better and movement is improved.
I know I'm still blotchy and pink, and I won't be entering Miss World any time soon, but I am so happy with my progress and I know I am on the road to better skin without the steroid creams!
I am flaking less, but some areas are stiill a bit flaky, and it seems like the skin is renewing itself every day.
I am posting some more photos today, as I feel like there is abig difference between my skin today and yesterday, although I am not sure how apparent it will be in the photos as it is hard to get the same level of lighting to show the colour of the skin.
If you compare this photo of my arm with the one I took a few days ago, the skin looks a lot smoother and it has lost the dry, wrinkly appearance. It is still a little bit pink, and the skin is not normal yet, but it is heading in the right direction. I am hoping that when we get some sunshine in a few months time, I can bare my arms and it will help them to heal as DR Rapaport is a big advocate of sunlight as a healer.
I am so glad I can now actually see white skin on my neck! This is SO much better than the first photo I took of my neck at the start of withdrawal, when the whole area was bright red and shiny. Now there is just a small pink blotchy area. I am very hopeful that this will improve over the next few months, and I am really glad it has stopped oozing.
My leg looks completely different to yesterday's photo. It still looks sore, but it does feel better and I do think it is healing. I can walk a bit better and movement is improved.
I know I'm still blotchy and pink, and I won't be entering Miss World any time soon, but I am so happy with my progress and I know I am on the road to better skin without the steroid creams!
Wednesday, 25 January 2012
Day 66 (photos)
Yesterday was a good day, and I was able to go out on the evening, so I'm feeling human again.
I askes on the forum about the pitted areas that I mentioned yesterday. It is apparently quite common to get these pitted areas during steroid withdrawal and the phenomenon is called vesiculation. Unfortunately, my camera doesn't have a good close up feature, so I can't take photos, but if you follow yesterday's link to Juliana's blog there is a good example photo on day 137.
I thought I would post some progress photos.
I am really pleased with the improvement in my neck. Last week, it was like a piece of bacon, red, raw and wet! Since the end of the flare, the skin has flaked off and feels baby smooth. Although the area is pink, the colour is a lot paler than it has been in a while and it is definitely getting better. I can move my neck and there is no weeping or oozing. For the first time in a while I was able to sleep without something round my neck to mop up the ooze. I am so happy, and I really hope that the next flare, whenever it comes, does not undo all the progress in this area! I still can't tolerate high necked clothing though and I like to have the skin exposed to the air as much as possible to minimise sweating.
As you can see, the back of my leg is terrible and walking is still a big problem for me, as it stings so much! If I remain in a sitting position for too long, the area gets wet and oozy. I have to keep my legs stretched out as much as possible. The area is also very itchy, so healing is slowed down by my fingernails scratching the area! I am thinking of bandaging this area with some tubular bandage to promote healing and keep it safe from scratching. this is by far the worst area at the moment, so the symptoms of withdrawal seem to be moving down my body. Interestingly, this is not really an area where I ever applied much steroid cream, and my face, where I applied lots of steroid creams, seems to be recovering OK.
Things are generally going in the right direction, and with no sign of flare number 4 just yet, so I will make the most of things and take it easy.
I askes on the forum about the pitted areas that I mentioned yesterday. It is apparently quite common to get these pitted areas during steroid withdrawal and the phenomenon is called vesiculation. Unfortunately, my camera doesn't have a good close up feature, so I can't take photos, but if you follow yesterday's link to Juliana's blog there is a good example photo on day 137.
I thought I would post some progress photos.
I am really pleased with the improvement in my neck. Last week, it was like a piece of bacon, red, raw and wet! Since the end of the flare, the skin has flaked off and feels baby smooth. Although the area is pink, the colour is a lot paler than it has been in a while and it is definitely getting better. I can move my neck and there is no weeping or oozing. For the first time in a while I was able to sleep without something round my neck to mop up the ooze. I am so happy, and I really hope that the next flare, whenever it comes, does not undo all the progress in this area! I still can't tolerate high necked clothing though and I like to have the skin exposed to the air as much as possible to minimise sweating.
As you can see, the back of my leg is terrible and walking is still a big problem for me, as it stings so much! If I remain in a sitting position for too long, the area gets wet and oozy. I have to keep my legs stretched out as much as possible. The area is also very itchy, so healing is slowed down by my fingernails scratching the area! I am thinking of bandaging this area with some tubular bandage to promote healing and keep it safe from scratching. this is by far the worst area at the moment, so the symptoms of withdrawal seem to be moving down my body. Interestingly, this is not really an area where I ever applied much steroid cream, and my face, where I applied lots of steroid creams, seems to be recovering OK.
Things are generally going in the right direction, and with no sign of flare number 4 just yet, so I will make the most of things and take it easy.
Tuesday, 24 January 2012
Day 65 Adrenal Fatigue
My skin is still in a good condition post-flare and even the backs of my legs seem a bit better today.
I noticed a new symptom that Juliana also mentioned on her blog. I get weepy areas of skin that crust over, but when the crusts come off, there are small pits, or wells underneath that look like open sores. I first had a patch like this on my nose a couple of days ago, and it was like there were small holes in the skin on my nose with water coming out if I applied any cream,
I don't really have an explanation for what this pitting is or what causes it, other than that it is another side effect of steroid withdrawal.
On a totally different subject, another symptom of steroid withdrawal is adrenal fatigue. The adrenals are the glands that make, amongst other things, cortisol, the production of which is supressed by the steroid creams, which trick the body into thinking it has enough cortisol. Naturally, during steroid cream withdrawal, the adrenals have to get used to functioning normally again, which can mean side effects such as depression, odd sleep patterns and mood swings.
That explains a lot.....!
I noticed a new symptom that Juliana also mentioned on her blog. I get weepy areas of skin that crust over, but when the crusts come off, there are small pits, or wells underneath that look like open sores. I first had a patch like this on my nose a couple of days ago, and it was like there were small holes in the skin on my nose with water coming out if I applied any cream,
I don't really have an explanation for what this pitting is or what causes it, other than that it is another side effect of steroid withdrawal.
On a totally different subject, another symptom of steroid withdrawal is adrenal fatigue. The adrenals are the glands that make, amongst other things, cortisol, the production of which is supressed by the steroid creams, which trick the body into thinking it has enough cortisol. Naturally, during steroid cream withdrawal, the adrenals have to get used to functioning normally again, which can mean side effects such as depression, odd sleep patterns and mood swings.
That explains a lot.....!
Monday, 23 January 2012
Day 64 Silk Scarf
I'm so glad that flare 3 is over and hopefully I will now have a few good days before the next one. I was pleased to wake up this morning with even more improvement to the skin on my neck and chest, which now has lovely soft skin. The skin colour is still pink and blotchy, but not burning red.
My only problem ares today are the backs of my legs, which are still really sore and when I scratch them or rub them, they start to ooze clear, sticky fluid. This obviously limits my ability to walk.
The silk scarves and pillowcase have really helped me over the past few days. It helps to have silk round my neck when it is flaring, as it seems to be less drying than cotton and leaves my skin in better condition. I shall be investing in some more silk scarves in preparation for the next flare.
My only problem ares today are the backs of my legs, which are still really sore and when I scratch them or rub them, they start to ooze clear, sticky fluid. This obviously limits my ability to walk.
The silk scarves and pillowcase have really helped me over the past few days. It helps to have silk round my neck when it is flaring, as it seems to be less drying than cotton and leaves my skin in better condition. I shall be investing in some more silk scarves in preparation for the next flare.
Sunday, 22 January 2012
Day 63 (photos)
Today has me hitting the 9 week mark and the reason I haven't posted recently is because last week was the week from hell with the worst flare yet. I could not even sit at the computer to type the blog because bending my legs in a sitting position caused them to ooze.
My skin has been buring since Monday, with severe oozing from my legs, elbow creases, neck, chest and behind my ears, which has caused my hair to become matted up with a yellow crust.
I have spent most of the week lying on the settee with a silk pillowcase or scarf wrapped around my neck to mop up the constant leaking, which also caused my neck to be so tight that I couldn't turn it at all. I was very depressed and in tears constantly, which makes me worried about the effect this is having on my family and kids. After all, I am usually a very "hands on" mom, who plays with the kids a lot and takes them out places, and now I am just a crying invalid on the setee. My little boy keeps asking me when I am going to get better.
However, last night, something changed. I Had a good sleep and woke up with fine white powdery flaky skin all over my face and neck. It looked bad, but the oozing and redness was gone and the skin underneath the flaking skin was soft and new. The oozing is now limited to behind my legs and behind my ears.
Anyway, I thought I would post some more "progress" photos, although they look pretty bad....
My neck has gone pretty flaky and dry, but it is a lot less red and raw than it has been in the past couple of days and the skin underneath the flakes is pretty good.
The back of my legs are really flaky and sore and walking is made more difficult by the fact that my knees are slightly swollen. If you compare it to the photo I took a couple of days ago, you can see that it has improved slightly, as the skin is dry and flaky rather than wet and juicy.
My arm looks like old lady's skin. it is very dry and atrophied. Still, I view the dry flaky skin as preferable to the wet oozy skin, so I am not complaining.
It looks like flare number 3, despite being intense, was only limited to 7 days, which is my shortest flare yet.
My skin has been buring since Monday, with severe oozing from my legs, elbow creases, neck, chest and behind my ears, which has caused my hair to become matted up with a yellow crust.
I have spent most of the week lying on the settee with a silk pillowcase or scarf wrapped around my neck to mop up the constant leaking, which also caused my neck to be so tight that I couldn't turn it at all. I was very depressed and in tears constantly, which makes me worried about the effect this is having on my family and kids. After all, I am usually a very "hands on" mom, who plays with the kids a lot and takes them out places, and now I am just a crying invalid on the setee. My little boy keeps asking me when I am going to get better.
However, last night, something changed. I Had a good sleep and woke up with fine white powdery flaky skin all over my face and neck. It looked bad, but the oozing and redness was gone and the skin underneath the flaking skin was soft and new. The oozing is now limited to behind my legs and behind my ears.
Anyway, I thought I would post some more "progress" photos, although they look pretty bad....
My neck has gone pretty flaky and dry, but it is a lot less red and raw than it has been in the past couple of days and the skin underneath the flakes is pretty good.
The back of my legs are really flaky and sore and walking is made more difficult by the fact that my knees are slightly swollen. If you compare it to the photo I took a couple of days ago, you can see that it has improved slightly, as the skin is dry and flaky rather than wet and juicy.
My arm looks like old lady's skin. it is very dry and atrophied. Still, I view the dry flaky skin as preferable to the wet oozy skin, so I am not complaining.
It looks like flare number 3, despite being intense, was only limited to 7 days, which is my shortest flare yet.
Wednesday, 18 January 2012
Day 59 Rebound Phenomenon Article Link
The skin on the back of my legs is still wet and tight, but the rest of the oozing areas seemed to calm down a lot last night and I slept really well. Sitting down is a problem as the skin gets wet at the back of my knees and when it dries out it dries tight and splits and cracks when I walk which is very painful.
Applying creams to the areas just make more fluid leak out, and applying coverings or dressings makes me sweat. Baths provide temporary relief, but as soon as the skin dries out it starts to flake and split again. I tried applying an ice pack, but that was really painful and stung my skin.
I think the best therapy is to let the air get to it as much as possible by wearing light clothing and adding a thin layer of cream to lubricate my joints so I can walk. I also have knee swelling, which is a new symptom, although many people going through withdrawal have some sort of edema or fluid retention issue.
One of the google group members posted this interesting link, which is worth a look:
http://www.google.com/url?sa=D&q=http://www.elsevier.es/en/revistas/allergologia-et-immunopathologia-105/rebound-phenomenon-to-systemic-corticosteroid-in-atopic-13082399-original-articles-2005&usg=AFQjCNGmnj-LF7QSN5pYRGroAqnrvp22vA
The evidence is mounting. Hopefully doctors will take note and be more careful prescribing steroid creams. I am not steroid phobic, but I do think that tighter rules about prescribing these potent creams would benefit everyone, and people should be aware that they should only be used for a few days at a time rather than months or years.
Applying creams to the areas just make more fluid leak out, and applying coverings or dressings makes me sweat. Baths provide temporary relief, but as soon as the skin dries out it starts to flake and split again. I tried applying an ice pack, but that was really painful and stung my skin.
I think the best therapy is to let the air get to it as much as possible by wearing light clothing and adding a thin layer of cream to lubricate my joints so I can walk. I also have knee swelling, which is a new symptom, although many people going through withdrawal have some sort of edema or fluid retention issue.
One of the google group members posted this interesting link, which is worth a look:
http://www.google.com/url?sa=D&q=http://www.elsevier.es/en/revistas/allergologia-et-immunopathologia-105/rebound-phenomenon-to-systemic-corticosteroid-in-atopic-13082399-original-articles-2005&usg=AFQjCNGmnj-LF7QSN5pYRGroAqnrvp22vA
The evidence is mounting. Hopefully doctors will take note and be more careful prescribing steroid creams. I am not steroid phobic, but I do think that tighter rules about prescribing these potent creams would benefit everyone, and people should be aware that they should only be used for a few days at a time rather than months or years.
Tuesday, 17 January 2012
Day 58 (photo)
Well, I knew this day was coming, but I would have liked a bigger break in between: Flare number 3 has arrived.
After a busy and active weekend, my body has responded quite angrily to all the increased activity and my skin is flaring badly, with lots of wet areas including the backs of my knees, the backs of my ears, my neck, my chest and my elbow creases. These areas are very raw, itchy and sticky to the touch and I don't really know how to deal with it other than expose the affected area to the air as much as possible to dry up the oozing. it is hard with the backs of my knees though, as they are usually bent in a sitting position, which causes oozing to pool in the skin fold. I am going to try lying on the setee with my legs straight and a fluffy towel under my legs to dry up the oozing. It is affecting my ability to walk.
This is a photo I took today of the back of my leg. My legs were fine during the first few weeks of withdrawal, so this is something new. It is not uncommon for this pattern of "moving rashes" to appear in patients going through steroid withdrawals.
It is disheartening to see areas of skin which were white a few days ago turning red and wet. It is as if all of the good is being undone. I know it is only a phase and each flare brings me closer to healing, so it is something to be endured. Hopefully, this flare will be shorter than the other two, which each lasted about 20 days. I'm hoping that the skin will improve and I can post a better picture of my leg in a few days!
After a busy and active weekend, my body has responded quite angrily to all the increased activity and my skin is flaring badly, with lots of wet areas including the backs of my knees, the backs of my ears, my neck, my chest and my elbow creases. These areas are very raw, itchy and sticky to the touch and I don't really know how to deal with it other than expose the affected area to the air as much as possible to dry up the oozing. it is hard with the backs of my knees though, as they are usually bent in a sitting position, which causes oozing to pool in the skin fold. I am going to try lying on the setee with my legs straight and a fluffy towel under my legs to dry up the oozing. It is affecting my ability to walk.
This is a photo I took today of the back of my leg. My legs were fine during the first few weeks of withdrawal, so this is something new. It is not uncommon for this pattern of "moving rashes" to appear in patients going through steroid withdrawals.
It is disheartening to see areas of skin which were white a few days ago turning red and wet. It is as if all of the good is being undone. I know it is only a phase and each flare brings me closer to healing, so it is something to be endured. Hopefully, this flare will be shorter than the other two, which each lasted about 20 days. I'm hoping that the skin will improve and I can post a better picture of my leg in a few days!
Monday, 16 January 2012
Day 57 Japanese Blog
I am now over 8 weeks into the withdrawal, and the pattern of redness is slowly shifting. My neck is improving every day and I now have regained full movement again. my face is also pretty clear and with minimal redness. Unfortunately, my legs have taken a turn for the worse, with hot, red, itchy skin all the way down the inside of my leg from my thigh to my ankle. The skin at the back of my knee joints is worse, and is constantly wet, and very tight, making it hard to walk. The only upside is that I can cover my legs with trousers or a long skirt, so I would rather have a flare on my legs than my face! I have read that this is a common pattern, so I see the change as a positive sign.
I have mentioned on this blog that the Japanese are a lot more aware of steroid rebound than we are in the west. There is a lady in Japan who is writing a blog similar to mine, which can be accessed via this link and using the translate option. I always find the similarities of people going through rebound astonishing, as we all seem to have the same pattern of rash on our bodies, no matter where we are from or what race we are.
Many sufferers are searching for a miracle cream, but we have to remember that topical steroid rebound is different to classic eczema, and the only real healer seems to be time, rather than creams. Dr Fukaya tell his patients to apply creams for movement, but never for cure, which is what I do. I use creams to lubricate very dry areas, but I don't slather them all over my skin, as I believe the skin will ultimately heal itself and I don't want to be too reliant on any cream, as that is how I got into this mess in the first place.
Basically, we just have to sit this out. I know it is boring, but time appears to be the only consistently proven cure for steroid rebound. I hope that as time goes on and awareness increases, medicines may be developed to tackle this issue better, resulting in a shorter rebound period. Or maybe new medicines will be developed that reduce the need for steroids, or replace them completely, meaning that future generations may never go through this kind of suffering. I hope so.
I have mentioned on this blog that the Japanese are a lot more aware of steroid rebound than we are in the west. There is a lady in Japan who is writing a blog similar to mine, which can be accessed via this link and using the translate option. I always find the similarities of people going through rebound astonishing, as we all seem to have the same pattern of rash on our bodies, no matter where we are from or what race we are.
Many sufferers are searching for a miracle cream, but we have to remember that topical steroid rebound is different to classic eczema, and the only real healer seems to be time, rather than creams. Dr Fukaya tell his patients to apply creams for movement, but never for cure, which is what I do. I use creams to lubricate very dry areas, but I don't slather them all over my skin, as I believe the skin will ultimately heal itself and I don't want to be too reliant on any cream, as that is how I got into this mess in the first place.
Basically, we just have to sit this out. I know it is boring, but time appears to be the only consistently proven cure for steroid rebound. I hope that as time goes on and awareness increases, medicines may be developed to tackle this issue better, resulting in a shorter rebound period. Or maybe new medicines will be developed that reduce the need for steroids, or replace them completely, meaning that future generations may never go through this kind of suffering. I hope so.
Saturday, 14 January 2012
Day 55 (video)
My skin just gets better and better! Today, I was able to take my son out to the motor show, as well as attending a party on the evening. my energy levels are high, and my skin feels amazing.
There has been lots of interesting activity on the google group today. The lastest information seems to be that recovery from topical steroid addiction can be 10-20% of the time that the person used the steroid. For example, if someone used steroid creams for 10 years, it may take them 1 or 2 years to recover. This can seem like bad news for people who have used creams for 30 years or more, but they need to focus that they will get better eventually, as have so many before them.
On a similar subject, Dr Fukaya, who I have mentioned many times on this blog as an expert in this field, has posted an interesting video on youtube of steroid withdrawal, including photos of people who have recovered completely:
There has been lots of interesting activity on the google group today. The lastest information seems to be that recovery from topical steroid addiction can be 10-20% of the time that the person used the steroid. For example, if someone used steroid creams for 10 years, it may take them 1 or 2 years to recover. This can seem like bad news for people who have used creams for 30 years or more, but they need to focus that they will get better eventually, as have so many before them.
On a similar subject, Dr Fukaya, who I have mentioned many times on this blog as an expert in this field, has posted an interesting video on youtube of steroid withdrawal, including photos of people who have recovered completely:
Friday, 13 January 2012
Day 54 (photos)
I thought it would be agood idea to post some photos of my progress. I am now nearly 8 weeks into withdrawal.
This is a picture I took shortly after starting steroid withdrawal a few weeks ago. The whole belly area is covered in a fine, red, itchy rash.
Compare the previous picture with the one I took today on day 54. Apart from some redness around my bellybutton, the rest of the area is returning to normal skin colour. The skin feels very smooth and soft to the touch, with no dryness at all. I have not used any products on this area of skin apart from the epsom salt baths. I am amazed with the improvement to the skin in such a short period of time.
I made a big mistake of not tying anything around my harnds to stop myself scratching in the night. As a result, I have an area on my arm which has been damaged my my nails. On the positive side, my arm in general is returning to white skin, and certainly does not have the red burning appearance of a few weeks ago.
It may appear from the pictures that progress is very slow, and indeed, it does sometimes seem that my skin looks worse rather than better in some areas, but I would like to point out that despite the way it looks, my skin feels so much better than it did. It is a lot smoother, with more elasticity and less dryness and flaking. My overall energy levels are up and I am able to get out of the house and lead a relatively normal life.
I am quite happy with the improvements in my skin now, as I know that recovery may take a year, so to see so much improvement in only two months of withdrawal has made me very positive indeed about the future. My biggest obstacle at the moment is scratch damage (I am actually scratching as I type this!), as scratching seems to undo all the good work and healing that my skin has experienced, so I will be tying the pillowcases round my hands tonight when I go to bed!
Thursday, 12 January 2012
Day 53 Dr Fukaya Blog About Steroid Addiction
My skin is doing pretty well apart from my neck, which feels as if the skin has shrunk tightly and lost all elasticity. Some areas of my neck have actually split when I have tried to turn my head and there is actually a split line beneath my chin that looks like my throat has been cut with a knife. I hope that I get more mobility in my neck soon, as it is really painful and makes me look very strange indeed as I can't walk tall with my head high and I am having to walk around with scrunched shoulders.
On a positive note, I was able to have a pretty normal day, attending a meeting at the school before shopping in town and having lunch in a restaurant. I love days like this, especially as I have been cooped up in the house all week apart from doing the school run every day.
There is a great link on the google group for Dr Fukaya's blog page. You may recall, Dr Fukaya MD is the Japanese doctor who documented and treated many cases of steroid addicted skin. To translate the Japanese, just right click the text and choose the translate option. Although he is now working as a cosmetic surgeon, he still has a great deal of interest in the subject of steroid addicted skin, and is one of the foremost experts on the subject.
On a positive note, I was able to have a pretty normal day, attending a meeting at the school before shopping in town and having lunch in a restaurant. I love days like this, especially as I have been cooped up in the house all week apart from doing the school run every day.
There is a great link on the google group for Dr Fukaya's blog page. You may recall, Dr Fukaya MD is the Japanese doctor who documented and treated many cases of steroid addicted skin. To translate the Japanese, just right click the text and choose the translate option. Although he is now working as a cosmetic surgeon, he still has a great deal of interest in the subject of steroid addicted skin, and is one of the foremost experts on the subject.
Wednesday, 11 January 2012
Day 52 Article Link on Steroid Abuse
After a couple of hard days coping with an oozing neck, I finally got a break last night with a full night's sleep from about midnight to 7:30 in the morning. I slept with a cotton pillowslip round my neck, but the oozing did finally stop and I can move my neck a bit better today.
Despite my good intentions not to use moisturisers, I have had to use a bit of hemp cream on my neck just so I can turn it. Holding my neck stiff all the time was really causing strain on my neck and shoulder muscles.
The sleep must have done me a lot of good as my skin feels great today. Previously inflamed areas are now pink rather than red and there are a lot more areas of white skin showing. Skin has greater elasticity and feels smooth to the touch. I can see a lot of improvement in the feel of my skin and it is starting to look better too, although I know that this will take time. My face looks and feels so much better than it did when I was using the steroid creams.
The Google support group has a great buzz about it at the moment, with posts about people who have been cured completely, which gives us all hope.
One of the members also posted this interesting article link on the dangers of steroids. It is well worth a read.
Despite my good intentions not to use moisturisers, I have had to use a bit of hemp cream on my neck just so I can turn it. Holding my neck stiff all the time was really causing strain on my neck and shoulder muscles.
The sleep must have done me a lot of good as my skin feels great today. Previously inflamed areas are now pink rather than red and there are a lot more areas of white skin showing. Skin has greater elasticity and feels smooth to the touch. I can see a lot of improvement in the feel of my skin and it is starting to look better too, although I know that this will take time. My face looks and feels so much better than it did when I was using the steroid creams.
The Google support group has a great buzz about it at the moment, with posts about people who have been cured completely, which gives us all hope.
One of the members also posted this interesting article link on the dangers of steroids. It is well worth a read.
Tuesday, 10 January 2012
Day 51 Neck Tightness
The oozing skin on my neck is relentless, so I had to sleep with a towel round my neck last night. When I woke up, the skin was not so dry and flaky on my neck, and was very smooth, new skin, but it was extremely tight and I can't move my head left and right at all.
I am trying to use as little product on my skin as possible. Sometimes I will dab a little moisturiser on my face or on areas of my neck so that I have more mobility, but in general I am of the opinion that the moisturiser creams can irritate the skin at what are still the very early stages of withdrawal and I don't want to set my improvement back by irritating the skin in any way. The areas such as my thighs and stomach, where I have not used any products at all, are healing faster than my neck and chest areas, and the skin is softer than it has ever been and normal to look at. I just need to get the rest of me to follow!
I slept a lot better last night, but I still woke up at 3:00 a.m. out of habit. I also find that it is a good time to check up on the google group . I was really pleased to see that there are quite a few new people joining the group at various stages on the steroid journey. It is great to read about people's experiences with the steroid rebound, because we are starting to get a clearer picture of common symptoms (red arms white palms!) and an idea of what treatments work the best, such as baths, creams or supplements. It is a great place to share thoughts with like minded people in the face of such apathy and ignorance from the general medical profession. I am so glad that the group is growing every day and sincerely hope that it continues to grow and that more people can free themselves from topical steroid addiction.
I am trying to use as little product on my skin as possible. Sometimes I will dab a little moisturiser on my face or on areas of my neck so that I have more mobility, but in general I am of the opinion that the moisturiser creams can irritate the skin at what are still the very early stages of withdrawal and I don't want to set my improvement back by irritating the skin in any way. The areas such as my thighs and stomach, where I have not used any products at all, are healing faster than my neck and chest areas, and the skin is softer than it has ever been and normal to look at. I just need to get the rest of me to follow!
I slept a lot better last night, but I still woke up at 3:00 a.m. out of habit. I also find that it is a good time to check up on the google group . I was really pleased to see that there are quite a few new people joining the group at various stages on the steroid journey. It is great to read about people's experiences with the steroid rebound, because we are starting to get a clearer picture of common symptoms (red arms white palms!) and an idea of what treatments work the best, such as baths, creams or supplements. It is a great place to share thoughts with like minded people in the face of such apathy and ignorance from the general medical profession. I am so glad that the group is growing every day and sincerely hope that it continues to grow and that more people can free themselves from topical steroid addiction.
Monday, 9 January 2012
Day 50 Progress
Wow, I can't believe I am on day 50 already. The time has gone surprisingly quickly.
After a couple of really good days last week, I came down to earth again with a bump when my neck and chest started oozing again. I hadn't experienced any oozing for a week or so and genuinely thought that I was over that phase, so it feels like a bit of a setback. When I lie in bed, my skin gets wet on the side that I am lying on, so it is very hard to get comfortable. The ooze is watery but slightly sticky and dries quickly when exposed to air, leaving very tight dry skin behind.
I have also started experiencing wetness on the backs of my knees and some areas of my legs. The tightness makes it very uncomfortable to walk, as it feels like my legs are going to split at the back.
I spent yesterday resting up as much as I could, though sleep is very difficult and almost impossible. I lie awake until the early hours and then catch some sleep before waking in a dried out state with wet areas on my neck and chest. I have to force myself out of bed because I have kids to get ready for school. I don't know how people hold down jobs when going through steroid withdrawal as everyday tasks become insurmountable obstacles.
On the plus side, I still don't consider myself to be in another full blown flare just yet, as there is huge improvement on the rest of my skin, particularly the stomach area, which is baby soft. My thighs are ok and my arms and face are continuing to improve, so it isn't all bad news. Different areas take different times to heal, and areas that got a lot of steroid cream may take the longest. I'm pretty sure I am going to heal quickly if I can just get my neck to improve. I think I have more good areas than bad at the moment and I am hoping that the next 50 days will be even better.
After a couple of really good days last week, I came down to earth again with a bump when my neck and chest started oozing again. I hadn't experienced any oozing for a week or so and genuinely thought that I was over that phase, so it feels like a bit of a setback. When I lie in bed, my skin gets wet on the side that I am lying on, so it is very hard to get comfortable. The ooze is watery but slightly sticky and dries quickly when exposed to air, leaving very tight dry skin behind.
I have also started experiencing wetness on the backs of my knees and some areas of my legs. The tightness makes it very uncomfortable to walk, as it feels like my legs are going to split at the back.
I spent yesterday resting up as much as I could, though sleep is very difficult and almost impossible. I lie awake until the early hours and then catch some sleep before waking in a dried out state with wet areas on my neck and chest. I have to force myself out of bed because I have kids to get ready for school. I don't know how people hold down jobs when going through steroid withdrawal as everyday tasks become insurmountable obstacles.
On the plus side, I still don't consider myself to be in another full blown flare just yet, as there is huge improvement on the rest of my skin, particularly the stomach area, which is baby soft. My thighs are ok and my arms and face are continuing to improve, so it isn't all bad news. Different areas take different times to heal, and areas that got a lot of steroid cream may take the longest. I'm pretty sure I am going to heal quickly if I can just get my neck to improve. I think I have more good areas than bad at the moment and I am hoping that the next 50 days will be even better.
Friday, 6 January 2012
Day 47 (photo)
My second flare is almost over. Over the last couple of days my skin has been less red and has flaked profusely, revealing softer, smoother skin. I am able to move a lot better, because there is less tightness in my elbow joints and the skin on my neck. my energy levels are up and I am less fatigued, although I still have trouble sleeping.
During these calm phases, life is more tolerable and it is much easier to get on with everyday activities.
I now have two flares under my belt. The first flare started a couple of days after I quit topical steroids and lasted about 18 days, with a small amount of overlap, as not all parts of the body heal at the same time. I then had a period of about 4 days of relatively calm skin when I was able to go out and socialise as normal. The second flare then hit and has lasted about 21 days before calming down again. I am hoping I have a longer break before the next flare, as I have a party to go to next week and I really want to be there!
This pattern of flares and breaks has so far been entirely consistent with the description of steroid rebound outlined in Dr Rapaports articles. If I continue the same pattern of flare and healing, I will hopefully be healed between 6 and 12 months. Even if it takes longer, I am confident that I will heal and the current state of my skin, which is lovely and smooth, gives me an idea of how good it can be potentially.
I am especially happy with the skin on my face:
As you can see, the skin is not perfect by any means, and I still have blotchy areas on my chin and cheeks, but the skin is pink rather than red, and more importantly, not burning or uncomfortable. I am glad that the oozing and crusting have stopped, too (compare this to my yukky day 12 photo). I am hoping that this area will continue to improve, as it was the area where I used potent topical steroids for an extended period of time (I'm talking many years!). Ironically, despite the slight flushing, the skin looks much better than it did when I was actually using the steroid creams, so I am glad to be seeing such improvement at just under 7 weeks of withdrawal.
Steroid rebound is hard, and many people are put off quitting topical creams because of the burning and bad effects of rebound. Unfortunately there is no way that I know of at the time of writing this to avoid steroid rebound. Maybe this will change in the future with the advent of new medicines.
Basically I had two choices:
1: Continue using the steroid creams, which my skin was get used to, requiring the use of stronger and more potent steroid creams which thin the skin, cause rosacea on my face and ultimately cause more rashes for the rest of my life.
or
2: Quit using the steroid creams, which will cause a massive, burning rebound flare, followed by less severe flares over a period of about 12 months, but ultimately will lead to clear, healed skin and no more dependence on creams.
I chose option 2. It has not been easy, but now I am really seeing the benefit.
During these calm phases, life is more tolerable and it is much easier to get on with everyday activities.
I now have two flares under my belt. The first flare started a couple of days after I quit topical steroids and lasted about 18 days, with a small amount of overlap, as not all parts of the body heal at the same time. I then had a period of about 4 days of relatively calm skin when I was able to go out and socialise as normal. The second flare then hit and has lasted about 21 days before calming down again. I am hoping I have a longer break before the next flare, as I have a party to go to next week and I really want to be there!
This pattern of flares and breaks has so far been entirely consistent with the description of steroid rebound outlined in Dr Rapaports articles. If I continue the same pattern of flare and healing, I will hopefully be healed between 6 and 12 months. Even if it takes longer, I am confident that I will heal and the current state of my skin, which is lovely and smooth, gives me an idea of how good it can be potentially.
I am especially happy with the skin on my face:
As you can see, the skin is not perfect by any means, and I still have blotchy areas on my chin and cheeks, but the skin is pink rather than red, and more importantly, not burning or uncomfortable. I am glad that the oozing and crusting have stopped, too (compare this to my yukky day 12 photo). I am hoping that this area will continue to improve, as it was the area where I used potent topical steroids for an extended period of time (I'm talking many years!). Ironically, despite the slight flushing, the skin looks much better than it did when I was actually using the steroid creams, so I am glad to be seeing such improvement at just under 7 weeks of withdrawal.
Steroid rebound is hard, and many people are put off quitting topical creams because of the burning and bad effects of rebound. Unfortunately there is no way that I know of at the time of writing this to avoid steroid rebound. Maybe this will change in the future with the advent of new medicines.
Basically I had two choices:
1: Continue using the steroid creams, which my skin was get used to, requiring the use of stronger and more potent steroid creams which thin the skin, cause rosacea on my face and ultimately cause more rashes for the rest of my life.
or
2: Quit using the steroid creams, which will cause a massive, burning rebound flare, followed by less severe flares over a period of about 12 months, but ultimately will lead to clear, healed skin and no more dependence on creams.
I chose option 2. It has not been easy, but now I am really seeing the benefit.
Thursday, 5 January 2012
Day 46: Photos
Now I am nearly 7 weeks into withdrawal, I have experienced quite a bit of improvement in skin condition. I have more energy and my skin is softer and not flaking so much. I thought I would post these encouraging photos of my arm and hand, which had been badly affected previously.
As you can see, the redness on my arms had calmed down considerably, and is not pink rather than red. It is slightly dry, but definitely a huge improvement.
The back of my hand is also calmer with paler skin. It is almost normal, apart from some slight redness at the base of my fingers.
I have had my ups and downs over the last 7 weeks, but I am really pleased with the way that my skin has improved. It feels smoother and the redness is going slowly. I know it is going to take time, but at least I feel like I am starting to get my life back.
The epsom baths are helping greatly, although I take one at night now instead of first thing in the morning, as the bath helps me relax and sleep better.
As you can see, the redness on my arms had calmed down considerably, and is not pink rather than red. It is slightly dry, but definitely a huge improvement.
The back of my hand is also calmer with paler skin. It is almost normal, apart from some slight redness at the base of my fingers.
I have had my ups and downs over the last 7 weeks, but I am really pleased with the way that my skin has improved. It feels smoother and the redness is going slowly. I know it is going to take time, but at least I feel like I am starting to get my life back.
The epsom baths are helping greatly, although I take one at night now instead of first thing in the morning, as the bath helps me relax and sleep better.
Tuesday, 3 January 2012
Day 44 Hot Baths Seem To Help Me
I had a theory. Now please bear in mind that I have no medical background whatsoever, so this is pure guesswork on my part, but I think that maybe, if the blood vessels are allowed to do what they want and flare for a controlled period by a warm bath, then during the cool down period, they will more readily return to their normal state, inducing paler skin as the blood vessels constrict during cooldown. I think it may be a way to train the blood vessels to go back to normal after they have been suppressed for so long by the steroid creams.
I take a hot (but not scalding or uncomfortable) bath every morning to which I add 100g of Epsom salts. I then relax for 30 minutes in the bath, as my skin turns slightly pink due to the heat and the effect on the blood vessels. the salts lift the dead flaky skin off and the magnesium in the bath salts softens and remineralises the skin.
When I get out of the bath I sit and cool down for a good 15 minutes. During this time my face perspires, which is a good sign, and my skin turns from pink to pale coloured as the blood vessels contrict. The skin is very tight at this point so a well tolerated moisturiser, such as vaseline is vital. I like using hemp seed oil cream, as it nourishes the skin and I don't react badly to it. I then put on some cool, light clothing and keep my skin cool for the rest of the day. The pale colour remains and I have noticed that the redness in my arms is vanishing. I will try and post some photos tomorrow.
The daily baths, along with my weird ritual of putting pillowcases on my hands at night to stop myself scratching, is promoting healing in my damaged skin. I hope this is the start of some good changes in my skin. Hot baths may not suit everyone with this condition, and of course, should not be used on people with blood pressure problems or other health problems. Alternatively, many prefer a "cool" approach, using ice packs to treat their symptoms. Ultimately, it is about whatever works for you.
I take a hot (but not scalding or uncomfortable) bath every morning to which I add 100g of Epsom salts. I then relax for 30 minutes in the bath, as my skin turns slightly pink due to the heat and the effect on the blood vessels. the salts lift the dead flaky skin off and the magnesium in the bath salts softens and remineralises the skin.
When I get out of the bath I sit and cool down for a good 15 minutes. During this time my face perspires, which is a good sign, and my skin turns from pink to pale coloured as the blood vessels contrict. The skin is very tight at this point so a well tolerated moisturiser, such as vaseline is vital. I like using hemp seed oil cream, as it nourishes the skin and I don't react badly to it. I then put on some cool, light clothing and keep my skin cool for the rest of the day. The pale colour remains and I have noticed that the redness in my arms is vanishing. I will try and post some photos tomorrow.
The daily baths, along with my weird ritual of putting pillowcases on my hands at night to stop myself scratching, is promoting healing in my damaged skin. I hope this is the start of some good changes in my skin. Hot baths may not suit everyone with this condition, and of course, should not be used on people with blood pressure problems or other health problems. Alternatively, many prefer a "cool" approach, using ice packs to treat their symptoms. Ultimately, it is about whatever works for you.
Monday, 2 January 2012
Day 43 Amazing Pictures From Dr Fukaya
Today was a really low point for me. I am fed up of waking up every morning with wetness on my chest and behind my ears and dry flaky skin over my neck and shoulders, so tight I cannot move my head.
I am fed up from lack of sleep and waking up at 3:00 a.m. itching madly.
I spent most of today in tears. The only consolation for me was reviewing the amazing pictures on Dr Fukaya's article and reminding myself that my skin will heal eventually.
It is so sad that there is so much igorance and denial in the general medical profession concerning topical steroid rebound, steroid erythema and tachyphylaxis. Those brave enough to speak out like Dr Fukaya and Dr Rapaport are leading the way in changing perceptions about topical steroids.
I am fed up from lack of sleep and waking up at 3:00 a.m. itching madly.
I spent most of today in tears. The only consolation for me was reviewing the amazing pictures on Dr Fukaya's article and reminding myself that my skin will heal eventually.
It is so sad that there is so much igorance and denial in the general medical profession concerning topical steroid rebound, steroid erythema and tachyphylaxis. Those brave enough to speak out like Dr Fukaya and Dr Rapaport are leading the way in changing perceptions about topical steroids.
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