I noticed that the TSW rash changes over the course of the day. I suppose this is in response to things like the weather, environment and also my natural body rhythms. I thought I would give a brief overview of how my skin progresses on a typical day:
Early Morning: This is the worst time for me. I find mornings incredibly hard. When I wake up, I tend to sit up in bed and run my fingers over my face and neck to check for damage inflicted by fingernails in the night! I have a tube of moisturiser by the bed and dab some on my neck so I can move it. I go to the bathroom and look in the mirror. The skin is not particularly red in the morning, but it is very dry. The second my skin hits the air, it is as though crackle-glaze has been applied all round my mouth. The skin puckers and scales over. I will apply a greasy ointment or oil round the mouth area to smooth out the chapped skin.
Then I'm busy feeding and dressing everyone, so the skin has to wait. Just before I have to leave for the school run, I check in the mirror. The skin is usually chapping up again and starting to redden. I whack on more moisturiser and a bit of lip balm and head out.
Depending on the weather, my skin reacts on contact with the outside air. Today it was cold and cloudy and rainy. My skin felt burning hot on contact with the cold air. By the time I get back home though, my skin is usually acclimatising, ready for what I call the "Big Calm."
Mid Morning: Mid morning to early afternoon is a good time for my skin. It calms down during this phase of the day. I check the mirror every so often and dab on cream where needed, as it is easy to dry out. If I am out, I take a tube of cream with me. I often find that this is a good time of day to have a bath, as it gives the skin chance to recover and it is also a good time to relax with everyone out of the house.
Afternoon: The skin is pretty calm in the afternoon, despite most afternoons being busy and hectic. Afternoons are a premium time to get jobs done because I am feeling at my best. I feel a lot better doing the afternoon school run than the morning one. once the kids are home, there is no time to think about my skin. I will be busy for the next few hours.
Evening: Dryness and calm phases over with, the evening is the time when the redness kicks in. It is also the time that my asthma starts to play up. I usually take an antihistamine in the evening to relieve the worst symptoms, but my skin gets increasingly red. I think my histamine levels peak in the evening, because patches of rashes turn red and get hives in them, making the skin very itchy. This is also the time of day when the skin starts to ooze.
Night: By the time I go to bed, the skin is at its reddest. It is not usually that dry, but it is starting to get oozy and wet at this point, especially on my neck. Getting comfortable in bed is tricky, made worse by the fact that my face and neck ooze on contact with the pillow. I usually lie awake for hours, followed by a fitful sleep between midnight and 3 and then a deep sleep till 7:30.
So in conclusion, on a average day, I am dry, then calm, then red.
Tuesday, 26 February 2013
Monday, 25 February 2013
Why I Hate Going To Bed (photos)
Last night when I was getting ready to go to bed, I just stood for a minute or two at the foot of the bed looking at it with absolute dread.
Why?
Because bedtime is hell time.
During the day, I am up and about and the air is getting to my skin. If it dries out, I dab a bit of moisturiser and carry on.
At night, my skin oozes terribly. The moment my face touches the pillow, it starts to leach fluid. My neck and chest start to ooze and soon I am a big oozy mess. My neck crease and the area behind my ear get all wet and sticky. Sleeping is difficult, to say the least.
Last night I managed to fluff the pillow in such a way so that my neck and face were exposed to as much air as possible. But then I fell asleep and then I woke up buried under the duvet in a sticky mess.
The lack of sunshine is having a detrimental effect on my skin. I thought I'd post a few photos of my flare, which has now spread to parts of the body I previously thought healed.
This is an oozy wet patch on my face. It alternates between oozy and dry and crusty.
This is a messy patch by my eye.
Look how dry my arm is! Dry and arid like the desert.
This is my leg that was previously healed and clear. This patch is really itchy.
Sorry about the fat belly picture, but I wanted to show that even my poor old tummy is rashy too!
Lastly, this is my duvet, covered in bloodstains and ooze. It's headed for the wash. I get through LOTS of washing.
So what am I to conclude about this? I am 15 months into withdrawal and seem to be getting worse! I had a horrible moment last night where it crossed my mind that maybe the steroid damage was permanent and maybe my blood vessels are like this forever. No, I still think I will heal, just like all the other thousands of Dr Rapaports patients.
I have no idea why I'm flaring though. It doesn't seem to be following the classic withdrawal pattern anymore. I have been flaring over a week and NEED A BREAK PLEASE!
I went shopping and managed to bump into everyone I knew today. I bumped into a really close friend and I was moaning about my skin. "You're glowing", she said.
That's why she is my friend.
Why?
Because bedtime is hell time.
During the day, I am up and about and the air is getting to my skin. If it dries out, I dab a bit of moisturiser and carry on.
At night, my skin oozes terribly. The moment my face touches the pillow, it starts to leach fluid. My neck and chest start to ooze and soon I am a big oozy mess. My neck crease and the area behind my ear get all wet and sticky. Sleeping is difficult, to say the least.
Last night I managed to fluff the pillow in such a way so that my neck and face were exposed to as much air as possible. But then I fell asleep and then I woke up buried under the duvet in a sticky mess.
The lack of sunshine is having a detrimental effect on my skin. I thought I'd post a few photos of my flare, which has now spread to parts of the body I previously thought healed.
Lastly, this is my duvet, covered in bloodstains and ooze. It's headed for the wash. I get through LOTS of washing.
So what am I to conclude about this? I am 15 months into withdrawal and seem to be getting worse! I had a horrible moment last night where it crossed my mind that maybe the steroid damage was permanent and maybe my blood vessels are like this forever. No, I still think I will heal, just like all the other thousands of Dr Rapaports patients.
I have no idea why I'm flaring though. It doesn't seem to be following the classic withdrawal pattern anymore. I have been flaring over a week and NEED A BREAK PLEASE!
I went shopping and managed to bump into everyone I knew today. I bumped into a really close friend and I was moaning about my skin. "You're glowing", she said.
That's why she is my friend.
Friday, 22 February 2013
Kübler-Ross and the Five Stages of Grief
The Itsan forum throws up some interesting topics of conversation, but one particular thread a few days ago piqued my interest. One of the forum members likened the steroid withdrawal process to the five stages of grief that people undergo when experiencing a stressful or life-changing event.
The stages are:
1. Denial: When I used steroids for my eczema, I could see that my skin was getting worse and that the fine red rash all over my body looked very different to the eczema I had experienced as a child. I took stronger and stronger meds without thinking there could be a link to my worsening condition. Even when I did finally stop steroids, there was a strong element of doubt as to whether my new regime would be successful. I often questioned whether the rebound flare was just worsening eczema from stopping the steroids. Many people read about Red Skin Syndrome and refuse to believe that they have it, even though they may be using steroid creams every day and display all the classic signs.
2. Anger: Once I understood what was happening to my body, I was angry. I was angry at my doctor for repeating my prescriptions without question, I was angry at the big pharmaceutical companies profiting from steroid cream sales and I was angry at myself for continuing to blindly use steroids for so many years without question. I was also pretty angry at all the people with nice skin-it just didn't seem fair! Likewise many other get angry when they come off the steroids and wish to sue or take action against those responsible. This militant attitude can have its benefits though. I channelled my energy and anger into creating this blog to warn people about steroids and prevent others from suffering as I have done.
3.Bargaining: In my case, bargaining was trying to find ways to drastically shorten the healing period. I tried various supplements, cutting out foods and different types of creams and ointments. At the end of the day, the evidence shows that unfortunately, at the present time, there is no known way to shorten TSW. You just have to let it run its course. This doesn't stop people from trying various methods to heal quicker though. The Itsan forum is full of anecdotes from individuals who have tried all sorts of remedies, from dietary changes to more drastic sauna treatments and alternative therapies. None of these has produced miraculous healing in anyone yet though, and the people who have healed completely never used any of these methods.
4. Depression: This is a biggie. I have felt rock-bottom many times during this hell of withdrawal. Usually it is because I am undergoing a flare after a period of good skin. An unexpected flare turn good skin to mush and turns hope into despair. Many have found the process of TSW so traumatic that they fear potential post traumatic stress disorder once it is over. Panic attacks are common, and despondency can push one to the limit. I am so thankful for the Itsan forum, which is a great source of encouragement when I am laid low.
5. Acceptance: OK, lets get on with it. I know what lon-term use of topical steroids have done to my body. I know that getting angry about it won't help and I know that there are no "miracle cures" at the present time. Getting sad about it doesn't help. It makes it worse. So I accept I have TSW. I am going to do my best to live with it and try and live my life as normally as possible.
The thing is that I usually slip into the previous stages, particularly when I am having a tough time!
What stage are you at?
The stages are:
1. Denial: When I used steroids for my eczema, I could see that my skin was getting worse and that the fine red rash all over my body looked very different to the eczema I had experienced as a child. I took stronger and stronger meds without thinking there could be a link to my worsening condition. Even when I did finally stop steroids, there was a strong element of doubt as to whether my new regime would be successful. I often questioned whether the rebound flare was just worsening eczema from stopping the steroids. Many people read about Red Skin Syndrome and refuse to believe that they have it, even though they may be using steroid creams every day and display all the classic signs.
2. Anger: Once I understood what was happening to my body, I was angry. I was angry at my doctor for repeating my prescriptions without question, I was angry at the big pharmaceutical companies profiting from steroid cream sales and I was angry at myself for continuing to blindly use steroids for so many years without question. I was also pretty angry at all the people with nice skin-it just didn't seem fair! Likewise many other get angry when they come off the steroids and wish to sue or take action against those responsible. This militant attitude can have its benefits though. I channelled my energy and anger into creating this blog to warn people about steroids and prevent others from suffering as I have done.
3.Bargaining: In my case, bargaining was trying to find ways to drastically shorten the healing period. I tried various supplements, cutting out foods and different types of creams and ointments. At the end of the day, the evidence shows that unfortunately, at the present time, there is no known way to shorten TSW. You just have to let it run its course. This doesn't stop people from trying various methods to heal quicker though. The Itsan forum is full of anecdotes from individuals who have tried all sorts of remedies, from dietary changes to more drastic sauna treatments and alternative therapies. None of these has produced miraculous healing in anyone yet though, and the people who have healed completely never used any of these methods.
4. Depression: This is a biggie. I have felt rock-bottom many times during this hell of withdrawal. Usually it is because I am undergoing a flare after a period of good skin. An unexpected flare turn good skin to mush and turns hope into despair. Many have found the process of TSW so traumatic that they fear potential post traumatic stress disorder once it is over. Panic attacks are common, and despondency can push one to the limit. I am so thankful for the Itsan forum, which is a great source of encouragement when I am laid low.
5. Acceptance: OK, lets get on with it. I know what lon-term use of topical steroids have done to my body. I know that getting angry about it won't help and I know that there are no "miracle cures" at the present time. Getting sad about it doesn't help. It makes it worse. So I accept I have TSW. I am going to do my best to live with it and try and live my life as normally as possible.
The thing is that I usually slip into the previous stages, particularly when I am having a tough time!
What stage are you at?
Thursday, 21 February 2013
Talking About Inhalers Again...
Sorry to harp on about inhalers all the time, but I found some useful info online this week that I wanted to share.
This article is about a child who used the same inhaler as me (seretide/advair) and ended up with a steroid-induced rash around his mouth. When he stopped the inhaler, the rash went away. At the bottom of the article there are about 8 different Pubmed articles by experts on the subject, although it is also just as easy to Google "inhalers and perioral dermatitis". Perioral dermatitis is a type of rash around the mouth commonly caused by steroid medication.
Suffice to say that this article worried me, particularly as it involved my inhaler and also because the worst area of my skin at the moment is the are surrounding the mouth. Coincidence? I have no idea.
Anyway, after a month of dropping every third puff, I have now lowered the dose to every other puff. I also make the point of rinsing my mouth thoroughly after a puff to remove all steroid traces from my mouth and throat. I seem to be doing OK, but I'm still taking it really slowly. After about a month of this, I will see where I go from there. I would sincerely love to be completely steroid free.
I am not sure what impact, if any, the steroid inhaler is having on my TSW. It is a low dose, but steroid addiction is due to the cumulative result of steroid use, so surely every time I puff, I am adding to the problem.
It's a scary subject because obviously, my first priority is breathing. I have no intention of doing anything dangerous. The previous times I tried to quit the inhaler I failed because my chest got congested and I could taste blood when I coughed.
However, I'm not sure that I can completely heal if I am using steroids, which leaves me in a kind of limbo, I suppose. Then again, Dr Fukaya, a Japanese dermatologist who has studied the science behind steroid addiction says that inhaled steroids do not contribute to topical steroid addiction. I guess this leaves me with more questions than answers yet again.
This article is about a child who used the same inhaler as me (seretide/advair) and ended up with a steroid-induced rash around his mouth. When he stopped the inhaler, the rash went away. At the bottom of the article there are about 8 different Pubmed articles by experts on the subject, although it is also just as easy to Google "inhalers and perioral dermatitis". Perioral dermatitis is a type of rash around the mouth commonly caused by steroid medication.
Suffice to say that this article worried me, particularly as it involved my inhaler and also because the worst area of my skin at the moment is the are surrounding the mouth. Coincidence? I have no idea.
Anyway, after a month of dropping every third puff, I have now lowered the dose to every other puff. I also make the point of rinsing my mouth thoroughly after a puff to remove all steroid traces from my mouth and throat. I seem to be doing OK, but I'm still taking it really slowly. After about a month of this, I will see where I go from there. I would sincerely love to be completely steroid free.
I am not sure what impact, if any, the steroid inhaler is having on my TSW. It is a low dose, but steroid addiction is due to the cumulative result of steroid use, so surely every time I puff, I am adding to the problem.
It's a scary subject because obviously, my first priority is breathing. I have no intention of doing anything dangerous. The previous times I tried to quit the inhaler I failed because my chest got congested and I could taste blood when I coughed.
However, I'm not sure that I can completely heal if I am using steroids, which leaves me in a kind of limbo, I suppose. Then again, Dr Fukaya, a Japanese dermatologist who has studied the science behind steroid addiction says that inhaled steroids do not contribute to topical steroid addiction. I guess this leaves me with more questions than answers yet again.
Wednesday, 20 February 2013
Stress is Bad For Your Skin
This latest flare has had me freaking out and worrying about the cause. It is true that flares don't necessarily have a cause, but sometimes a stressful event or eating a particular type of food can precipitate a flare up. In my case, I believe the most recent flare was due to a rather stressful incident I had a few days ago, which I spoke about on my other blog. The incident really upset me and I was crying most of the day, which likely brought about the flare.
There have been various experiences on the Itsan forum where people have had periods of good skin, but then experienced a stressful event which brought on a very bad skin reaction. One member of Itsan had been completely healed, but when a close friend died, her rashes started up again.
I'm not a scientist, but this doesn't stop me theorising about what is going on. I read an interesting article on Wikipedia about cortisol and its role in the body. Cortisol is the body's own natural hydrocortisone and is made in the adrenal glands. Cortisol is produced when the body is stressed. The article states:
"Cortisol is released in response to stress, sparing available glucose for the brain, generating new energy from stored reserves, and diverting energy away from low-priority activities (such as the immune system) in order to survive immediate threats or prepare for the exertion of rising to a new day."
OK, so this leads me to my theory. When we are stressed, our body makes hydrocortisone. Cortisol affects the blood vessels. Now maybe this causes us to flare because the blood vessels react the same way than they would to steroid cream. Another theory is related to the fact that cortisol impacts on the immune system. This could lead to skin problems too. I myself have noticed that when I get stressed I get coldsores.
This leads me to a lot of interesting questions that I don't have the answer to. I know my body makes its own hydrocortisone, so do elevated levels of cortisol affect TSW? Seems like a good excuse to chill out and relax as much as possible. I wonder if anxious individuals are slower to heal? What about exercise? Presumably, any kind of physical activity would get the adrenaline pumping, but then again, exercise also relaxes the body. Interestingly, this is what Wikipedia says:
Factors generally reducing cortisol levels
So according to that list, I should listen to lots of music, dance around a lot, give up coffee (no!!!) and laugh a lot. (Not quite sure what to make of the weird one about young female pigs mating. Does that apply to humans too?)
HAHAHAHAHAHAHA!!!!! I feel so much better now.
(BTW a massive thank you to all the Itsan forumites who gave me a virtual hug when I was feeling lousy yesterday. The forum is an absolute lifeline to those suffering.)
There have been various experiences on the Itsan forum where people have had periods of good skin, but then experienced a stressful event which brought on a very bad skin reaction. One member of Itsan had been completely healed, but when a close friend died, her rashes started up again.
I'm not a scientist, but this doesn't stop me theorising about what is going on. I read an interesting article on Wikipedia about cortisol and its role in the body. Cortisol is the body's own natural hydrocortisone and is made in the adrenal glands. Cortisol is produced when the body is stressed. The article states:
"Cortisol is released in response to stress, sparing available glucose for the brain, generating new energy from stored reserves, and diverting energy away from low-priority activities (such as the immune system) in order to survive immediate threats or prepare for the exertion of rising to a new day."
OK, so this leads me to my theory. When we are stressed, our body makes hydrocortisone. Cortisol affects the blood vessels. Now maybe this causes us to flare because the blood vessels react the same way than they would to steroid cream. Another theory is related to the fact that cortisol impacts on the immune system. This could lead to skin problems too. I myself have noticed that when I get stressed I get coldsores.
This leads me to a lot of interesting questions that I don't have the answer to. I know my body makes its own hydrocortisone, so do elevated levels of cortisol affect TSW? Seems like a good excuse to chill out and relax as much as possible. I wonder if anxious individuals are slower to heal? What about exercise? Presumably, any kind of physical activity would get the adrenaline pumping, but then again, exercise also relaxes the body. Interestingly, this is what Wikipedia says:
Factors generally reducing cortisol levels
- Magnesium supplementation decreases serum cortisol levels after aerobic exercise,[69][70] but not after resistance training.[71]
- Omega-3 fatty acids have a dose-dependent effect[72] in slightly reducing cortisol release influenced by mental stress,[73] suppressing the synthesis of interleukin-1 and -6 and enhancing the synthesis of interleukin-2; the former promotes higher CRH release. Omega-6 fatty acids, on the other hand, have an inverse effect on interleukin synthesis.[citation needed]
- Music therapy can reduce cortisol levels in certain situations.[74]
- Massage therapy can reduce cortisol.[75]
- Laughing, and the experience of humour, can lower cortisol levels.[76]
- Soy-derived phosphatidylserine interacts with cortisol; the correct dose, however, is unclear.[77][78]
- Black tea may hasten recovery from a high-cortisol condition.[79][80][non-primary source needed]
- Regular dancing has been shown to lead to significant decreases in salivary cortisol concentrations.[81]
[edit] Factors generally increasing cortisol levels
- Caffeine may increase cortisol levels.[82]
- Sleep deprivation[83]
- Intense (high VO2 max) or prolonged physical exercise stimulates cortisol release to increase gluconeogenesis and maintain blood glucose.[84] Proper nutrition[85] and high-level conditioning[86] can help stabilize cortisol release.
- The Val/Val variation of the BDNF gene in men, and the Val/Met variation in women, are associated with increased salivary cortisol in a stressful situation.[87]
- Hypoestrogenism and melatonin supplementation increase cortisol levels in postmenopausal women.[88]
- Burnout is associated with higher cortisol levels.[89]
- Severe trauma or stressful events can elevate cortisol levels in the blood for prolonged periods.[90][91]
- Subcutaneous adipose tissue regenerates cortisol from cortisone.[92]
- Anorexia nervosa may be associated with increased cortisol levels.[93]
- The serotonin receptor gene 5HTR2C is associated with increased cortisol production in men.[94]
- Commuting increases cortisol levels relative to the length of the trip, its predictability and the amount of effort involved.[95]
- Stimuli associated with sexual intercourse can increase cortisol levels in gilts (a young female pig that has not produced her first litter).[96]
- Severe calorie restriction causes elevated baseline levels of cortisol.[97]
So according to that list, I should listen to lots of music, dance around a lot, give up coffee (no!!!) and laugh a lot. (Not quite sure what to make of the weird one about young female pigs mating. Does that apply to humans too?)
HAHAHAHAHAHAHA!!!!! I feel so much better now.
(BTW a massive thank you to all the Itsan forumites who gave me a virtual hug when I was feeling lousy yesterday. The forum is an absolute lifeline to those suffering.)
Tuesday, 19 February 2013
Still Crusty....(photo)
Feeling really yukky today because I'm still crusty round my mouth. The kids are off school and its a lovely sunny day and I can't go anywhere because I look like a freak.
Truth is, steroid withdrawal is LONG process and it has a habit of lifting you up impossibly high and then dropping you down into a seemingly bottomless pit.
I am not posting this picture to discourage anyone, but those considering embarking on steroid cream withdrawal need to realise that it is not a quick fix. I can't wait to post some healed photos on here; my skin is obviously working overtime right now to heal itself. I still consider all this flaking a good sign that my skin is working hard to heal' a bit like a natural chemical peel, as it were!
My sympathy goes out to all the other red-skinners suffering. I wish I could shout out "Yay! 15 months and I'm healed!", but it looks like it could be a while yet.
Hang in everyone.
I am not posting this picture to discourage anyone, but those considering embarking on steroid cream withdrawal need to realise that it is not a quick fix. I can't wait to post some healed photos on here; my skin is obviously working overtime right now to heal itself. I still consider all this flaking a good sign that my skin is working hard to heal' a bit like a natural chemical peel, as it were!
My sympathy goes out to all the other red-skinners suffering. I wish I could shout out "Yay! 15 months and I'm healed!", but it looks like it could be a while yet.
Hang in everyone.
Monday, 18 February 2013
Crusting and Oozing Again! (photo)
A couple of days ago I thought that my face was almost healed. The skin was a lot smoother and some of the troublesome areas were starting to improve.
Unfortunately, as is often the case with TSW, this was not to last.
Last night when I was lying in bed, I seemed to have trouble with the nerves on the left side of my face. The skin felt tight and sore. The skin on my chin kept leaching fluid and it was hard to get comfortable.
When I woke up, the bottom half of my face was covered in fine yellow crust that had set hard. Ugh.
I have found, from trial and error, that when the skin is like this, it is best not to moisturise, even though this seems counter-intuitive. The best remedy for me is to make up some domeboro solution or epsom salts in water and apply to a cotton wool pad, gently dabbing the face. It is important not to pull at the crusty areas, as the area underneath will be wet and will only crust away again. The best thing to do is dab and let it dry and then a few hours later, dab again. The astringent effect of the domeboro will dry up the ooze and stop the crusting.
I am nearly 15 months into TSW, but used strong steroids on my face, so it is understandable that the skin is having a tough time getting itself right. I believe that any change, even the icky ooze, is a sign that the skin is doing something to right itself and I still think full healing is not far away. The rest of my body is doing great, with much of the skin back to normal. My palms, which have given me a lot of grief over the past month or so are finally going back to normal.
There is no way I will let this setback get me down. I am too close to the finish line!
Unfortunately, as is often the case with TSW, this was not to last.
Last night when I was lying in bed, I seemed to have trouble with the nerves on the left side of my face. The skin felt tight and sore. The skin on my chin kept leaching fluid and it was hard to get comfortable.
When I woke up, the bottom half of my face was covered in fine yellow crust that had set hard. Ugh.
I have found, from trial and error, that when the skin is like this, it is best not to moisturise, even though this seems counter-intuitive. The best remedy for me is to make up some domeboro solution or epsom salts in water and apply to a cotton wool pad, gently dabbing the face. It is important not to pull at the crusty areas, as the area underneath will be wet and will only crust away again. The best thing to do is dab and let it dry and then a few hours later, dab again. The astringent effect of the domeboro will dry up the ooze and stop the crusting.
I am nearly 15 months into TSW, but used strong steroids on my face, so it is understandable that the skin is having a tough time getting itself right. I believe that any change, even the icky ooze, is a sign that the skin is doing something to right itself and I still think full healing is not far away. The rest of my body is doing great, with much of the skin back to normal. My palms, which have given me a lot of grief over the past month or so are finally going back to normal.
There is no way I will let this setback get me down. I am too close to the finish line!
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