Had a day out with the family at Blackpool yesterday. My skin coped well, although I had a tube of hemp cream in my bac to keep myself moisturised and tried to keep myself hydrated with drinks throughout the day.
I had a small coldsore appear for the first time since I started withdrawals. I used to get coldsores every couple of months when I was using the steroid creams, because they decreased the immunity of my skin. Maybe now I will only get one once a year, or even less, as my skin continues to get thicker and stronger. Another bonus is that the stratch marks on my tummy and thighs seem to be fading too, as the skin thickens up.
Looking at my skin, I roughly estimate that it will take around 6 more months to heal completely as I am "almost there". The stubborn patches on my inner calves and inner arms are fading fast, and most of my body skin has returned to normal. My face is still a bit pink, with a bit of roughness on my cheeks, but I suppose this will be the last area to heal as I blasted it with strong steroids for many years. It would be great if my skin is healed when I hit the one-year mark in November.
Little Keira (see link for scratchy monster blog on the right) has just celebrated one year off the creams and is now completely healed! I am so happy for her, as I know how hard the steroid withdrawal journey is, and it must be especially hard for kids.
Well done Keira! xxx
Wednesday, 29 August 2012
Saturday, 25 August 2012
Day 289: Talking about RSS to a Friend (imaginary scenario)
People with RSS sometimes find it hard to talk to others about the condition. Here I imagine how a typical conversation might go....
Friend: Hi. Oh, is your eczema playing up today? It looks sore.
Me: Yes, I'm having a flare, but actually, this isn't eczema. It is something called Red Skin Syndrome.
Friend: It looks like eczema.
Me: Yes, I know. It feels a bit different though. It burns more than usual eczema. The good news is that it is curable though.
Friend: I didn't know eczema was curable.
Me: Well, like I said, this is different to eczema. The rash was actually brought on by using too many steroid creams on my skin. Now I have stopped using them, the skin should go back to normal. It can take a couple of years though.
Friend: But you used the creams for your eczema right? So won't it come back if you stop using them?
Me: I don't know. Possibly, or it could be that I am lucky and have grown out of it. If I do have any remaining eczema, I would have to look at triggers like detergents, diet or allergies and try to eliminate the triggers. A bit of eczema on the back of my legs is a lot more preferable to the whole-body rash of RSS though.
Friend: I know a good cream for eczema. Its called "x". Have you tried that?
Me: Yes, I've used it in the past, but like I say, the only cure for RSS is to stop using steroids. Creams don't really make much difference.
Friend: My brother uses steroids for his eczema. Are you saying they are dangerous?
Me: Well they can be if they are not used properly. Any use over a week can be the start of addiction and needing increasingly stronger creams can also be a problem. Tell you what, why don't you check out the itsan.org site? There is loads of information on there.
Friend: What site?
Me: Itsan.org. I'll write it down for you.
This is just an imaginary scenario, but it highlights a few points that come up a lot in conversation. I think quite a few of us in steroid withdrawal can relate to it!
Friend: Hi. Oh, is your eczema playing up today? It looks sore.
Me: Yes, I'm having a flare, but actually, this isn't eczema. It is something called Red Skin Syndrome.
Friend: It looks like eczema.
Me: Yes, I know. It feels a bit different though. It burns more than usual eczema. The good news is that it is curable though.
Friend: I didn't know eczema was curable.
Me: Well, like I said, this is different to eczema. The rash was actually brought on by using too many steroid creams on my skin. Now I have stopped using them, the skin should go back to normal. It can take a couple of years though.
Friend: But you used the creams for your eczema right? So won't it come back if you stop using them?
Me: I don't know. Possibly, or it could be that I am lucky and have grown out of it. If I do have any remaining eczema, I would have to look at triggers like detergents, diet or allergies and try to eliminate the triggers. A bit of eczema on the back of my legs is a lot more preferable to the whole-body rash of RSS though.
Friend: I know a good cream for eczema. Its called "x". Have you tried that?
Me: Yes, I've used it in the past, but like I say, the only cure for RSS is to stop using steroids. Creams don't really make much difference.
Friend: My brother uses steroids for his eczema. Are you saying they are dangerous?
Me: Well they can be if they are not used properly. Any use over a week can be the start of addiction and needing increasingly stronger creams can also be a problem. Tell you what, why don't you check out the itsan.org site? There is loads of information on there.
Friend: What site?
Me: Itsan.org. I'll write it down for you.
This is just an imaginary scenario, but it highlights a few points that come up a lot in conversation. I think quite a few of us in steroid withdrawal can relate to it!
Thursday, 23 August 2012
Day 287: The difference between Eczema And Red Skin Syndrome
Eczema is a complicated issue and may involve many factors.
Sometimes the word "eczema" is used interchangeably with "Red Skin Syndrome", which can be misleading.
I had eczema as a child and as a teenager. What I have now is not eczema.
I believe I have grown out of my eczema (although I will have to wait until the end of withdrawals to see if this is true). The red rash that has plagued my body for the last 15 years is steroid-induced eczema, which is a very different beast.
Yes, it looks the same as eczema, but unlike eczema, red skin syndrome affects the whole body and is characterised by a red burning rash, which gets worse when you stop applying steroid creams, due to dependence on the steroids. True eczema itches, but should not burn and is usually confined to certain areas of the body such as behind the legs, on the hands or elbow crooks. it may also appear on the face as an adverse reaction to cosmetics, which is what happened to me in my early 20's.
To treat eczema you need to identify and remove the triggers. With many people, the trigger is detergent, which unfortunately is found in most items, including toothpaste, bubble bath, shampoo and washing powder. By removing detergents completely, many have found that their eczema clears up. With others, the trigger can be certain foods, or a reaction to allergens like pet hair or dust mites. If the triggers are there, the eczema will remain.
A good moisturiser can help protect the skin barrier against allergens. "Shielding lotions" are especially useful. They are easy to apply and form a barrier on the skin.
Treating Red Skin Syndrome is different. Long term use and overuse of steroid creams are the cause so RSS will continue with application of increasingly potent steroid creams. Stopping creams will cause a terrible rebound, burning and oozing for several months. Sleep will be disrupted and normal life can become very difficult. Withdrawal can take several years depending on the length of time that the steroid creams were used as well as the potency.
Eczema and RSS should not be confused with one another. You cannot "cure" regular eczema by stopping steroids. You have to remove triggers. RSS can be cured by stopping steroids, but again, any triggers that caused the initial eczema that required the steroid treatment should be investigated and removed.
itsan.org has a good FAQ section to help a person determine whether their rash is RSS or regular eczema.
Sometimes the word "eczema" is used interchangeably with "Red Skin Syndrome", which can be misleading.
I had eczema as a child and as a teenager. What I have now is not eczema.
I believe I have grown out of my eczema (although I will have to wait until the end of withdrawals to see if this is true). The red rash that has plagued my body for the last 15 years is steroid-induced eczema, which is a very different beast.
Yes, it looks the same as eczema, but unlike eczema, red skin syndrome affects the whole body and is characterised by a red burning rash, which gets worse when you stop applying steroid creams, due to dependence on the steroids. True eczema itches, but should not burn and is usually confined to certain areas of the body such as behind the legs, on the hands or elbow crooks. it may also appear on the face as an adverse reaction to cosmetics, which is what happened to me in my early 20's.
To treat eczema you need to identify and remove the triggers. With many people, the trigger is detergent, which unfortunately is found in most items, including toothpaste, bubble bath, shampoo and washing powder. By removing detergents completely, many have found that their eczema clears up. With others, the trigger can be certain foods, or a reaction to allergens like pet hair or dust mites. If the triggers are there, the eczema will remain.
A good moisturiser can help protect the skin barrier against allergens. "Shielding lotions" are especially useful. They are easy to apply and form a barrier on the skin.
Treating Red Skin Syndrome is different. Long term use and overuse of steroid creams are the cause so RSS will continue with application of increasingly potent steroid creams. Stopping creams will cause a terrible rebound, burning and oozing for several months. Sleep will be disrupted and normal life can become very difficult. Withdrawal can take several years depending on the length of time that the steroid creams were used as well as the potency.
Eczema and RSS should not be confused with one another. You cannot "cure" regular eczema by stopping steroids. You have to remove triggers. RSS can be cured by stopping steroids, but again, any triggers that caused the initial eczema that required the steroid treatment should be investigated and removed.
itsan.org has a good FAQ section to help a person determine whether their rash is RSS or regular eczema.
Wednesday, 22 August 2012
Day 286 TSW News From Slovenia
Red Skin Syndrome is in the news again. This time in Slovenia.
Red Skin sufferer and fellow blogger Spela submitted an article to her local newspaper and it got published!
This is a great way to get the word out about the dangers of steroid cream overuse. Some of the itsan members have also been on radio shows talking about the condition.
This blog is now getting about 400 hits a day, so there are obviously many people searching for answers.
I can say from experience that Red Skin Syndrome is real, steroid withdrawal is horrible, but healing is absolutely bliss!
I still have a little way to go, but I am seeing improvements every day. I can't believe I have been off the steroid creams for 9 whole months and will be happy to celebrate my "steroid-free-versary" in November!
Red Skin sufferer and fellow blogger Spela submitted an article to her local newspaper and it got published!
This is a great way to get the word out about the dangers of steroid cream overuse. Some of the itsan members have also been on radio shows talking about the condition.
This blog is now getting about 400 hits a day, so there are obviously many people searching for answers.
I can say from experience that Red Skin Syndrome is real, steroid withdrawal is horrible, but healing is absolutely bliss!
I still have a little way to go, but I am seeing improvements every day. I can't believe I have been off the steroid creams for 9 whole months and will be happy to celebrate my "steroid-free-versary" in November!
Sunday, 19 August 2012
Day 283 Allergies!
For some reason, my allergies seem to be acting up. I am coughing, sneezing and itching and my eyes are watery.
This has had a slightly adverse effect on my skin, as I have been scratching a fair bit. The crooks of my arms have a slight blotchy red rash which may or may not be "true" eczema rather than Red Skin Syndrome. The backs of my legs are also affected. Maybe these areas will always be troublesome, even after I have healed from Red Skin Syndrome. However, to get this thing in context, these rashes are very mild compared to my early withdrawal rashes.
Generally speaking though, my skin is still in good condition and I look forward to posting some photos soon. The best areas are my calves, which are now healed from the terrible wounds which plagued me since January. My face and palms have improved a lot too.
It is sunny today, so I plan to follow Dr Rapaport's advice and get some sun on my skin to accelerate healing.
This has had a slightly adverse effect on my skin, as I have been scratching a fair bit. The crooks of my arms have a slight blotchy red rash which may or may not be "true" eczema rather than Red Skin Syndrome. The backs of my legs are also affected. Maybe these areas will always be troublesome, even after I have healed from Red Skin Syndrome. However, to get this thing in context, these rashes are very mild compared to my early withdrawal rashes.
Generally speaking though, my skin is still in good condition and I look forward to posting some photos soon. The best areas are my calves, which are now healed from the terrible wounds which plagued me since January. My face and palms have improved a lot too.
It is sunny today, so I plan to follow Dr Rapaport's advice and get some sun on my skin to accelerate healing.
Wednesday, 15 August 2012
Day 279 Is There a “Right Way” to do Steroid Withdrawal?
I am enjoying the process of charting my steroid-free journey, but I also accept that there is more than one way to heal from Red Skin Syndrome. I have followed what I would call the "Itsan route" of stopping steroid creams cold turkey. I have not consulted any doctors of dermatologists during my withdrawal process and have healed slowly over the last 9 months to a point where my skin is good. However, as my photo documentation shows, the early stages of withdrawal can be very tough, and for many, unbearable, especially if they have to work.
I had a comment on my blog a couple of days ago from a lady who tried a different method from the "Itsan Route". She consulted her dermatologist, who made her a cream with weak hydrocortisone to enable her to wean slowly from the steroids. This method worked for her. She is now off the steroid creams completely and her skin is doing well. It just goes to show that we should not be dogmatic about any particular approach to steroid withdrawal, as so little is known about is at present.
Another interesting subject is the use of a drug called Cyclosporin. It is a strong immunosuppressant drug, commonly used in organ transplant procedures to prevent an organ being rejected. It is a drug that is increasingly used to treat eczema, as the immunosuppressant action can calm flares. As the drug is powerful and has many side effects, it is always monitored by a physician, who will take regular blood tests from the patient to ensure that they are not reacting badly to the drug.
Recently, one of the members of the Itsan forum tried Cyclosporin on the recommendation of a sympathetic dermatologist. This is what he had to say:
"
I had a comment on my blog a couple of days ago from a lady who tried a different method from the "Itsan Route". She consulted her dermatologist, who made her a cream with weak hydrocortisone to enable her to wean slowly from the steroids. This method worked for her. She is now off the steroid creams completely and her skin is doing well. It just goes to show that we should not be dogmatic about any particular approach to steroid withdrawal, as so little is known about is at present.
Another interesting subject is the use of a drug called Cyclosporin. It is a strong immunosuppressant drug, commonly used in organ transplant procedures to prevent an organ being rejected. It is a drug that is increasingly used to treat eczema, as the immunosuppressant action can calm flares. As the drug is powerful and has many side effects, it is always monitored by a physician, who will take regular blood tests from the patient to ensure that they are not reacting badly to the drug.
Recently, one of the members of the Itsan forum tried Cyclosporin on the recommendation of a sympathetic dermatologist. This is what he had to say:
"
So, it was 3 weeks Friday gone since I first went to see the derm and started my course of Cyclosporine and was also given Protopic ointment to use once or twice a day. Well, when I went to the derm I had very severe RSS covering almost my whole body really, it was swollen, red, itching like mad, oozing and flaking. By the time I went to see the derm the next week, literally only me would have been able to tell that I had ever had RSS or was going through TSW. The change was so dramatic, I just couldn't believe it, I looked completely normal within a week, apart from a faint line on my stomach where ever so slightly rosey skin changed to white "normal" skin, but as I say this was barely noticable.
The dose of Cyclospine that I have been taking and still am taking is 100mg daily and I weigh (I think) just over 10 stone, I have to go back to the derm in a month when the dose will be reduced. The derm said that as I am young and otherwise healthy she would personally be happy to see me stay on the Cyclosporine for 6 months to a year, this of course is only if required. She also stated that the dose of Cyclosporine that I am taking is low and that some people take a lot more than this, but obviously we are both pleased that it is being so effective in combatting the RSS (she still calls it eczema but i don't care!) . I will also add, that after the first week, the derm told me to reduce the cyclosporine to 50mg a day, which I did for a few days but felt that the RSS was coming back, so I upped it again as the derm had instructed me to do if I saw that it was coming back.
At first I thought that it was the protopic ointment, which for the first week I was applying to any area on my body affected by the RSS (a hell of a lot) twice a day. The derm however told me that it would be the Cyclosporine doing all the hard work, I was sceptical of this but jsut kept quiet, after all I looked and felt completely normal, still do. However, now I do believe that it is the Cyclosporine that is having this amazing affect, as I only use the Protopic say 3 or 4 times a week now. I still itch, but nowhere near as much, and when I do, my skin doesn't flare because of it.
I have been to the derm 3 times and each time they have taken a blood test and urine test, they have looked at each to see if there is any sign of unwanted side effect from the cyclosporine, but found nothing out of the ordinary.
As you can imagine I am so pleased that I am "normal", some of you will probably tut at me on here but I have been out drinking for the past 3 weekends, socializing with friends, working and having a laugh whilst doing it, everything that I used to do, I am not restricted in anyway. I am so pleased that I went to the derm! and I know that these treatments might not work as well for other people, maybe I am lucky and I am so grateful for that if it is the case, but I suspect that there are quite a few people on this forum that would benefit hugely from using Cyclosporine and Protopic ointment."
This post goes to show that the individual has to choose the method that suits them best. I am neither advocating or condemning the use of drugs like cyclosporin, as I have heard both positive and negative comments about it, but I feel that we should be open minded when it comes to treating steroid withdrawal and not insist that people have to follow a certain method.
I hope that the man who left that comment on the forum keeps us updated with his progress as to how the drug worked long-term.
As for me, I am happy that I managed to get through withdrawals relatively easily, but I appreciate that much of that was due to the fact that I can work from home and that I had lots of support from my husband. Not everyone has the luxury of whiling away the worst part withdrawal period on the settee like I did.
How a person managed steroid withdrawal is a matter of personal choice, whether that is slow tapering or "cold turkey", and nobody should be criticised about their choice, as the end result will hopefully be the same; freedom from dependence on topical steroids.
If anyone has tried a different method from the accepted "cold turkey" withdrawal method, please leave a comment. I would love to hear about what worked for you.
Saturday, 11 August 2012
Day 275 Oral Steroids And TSW
I have been suffering with a persistent cough now for 3 weeks (yes, I know this hasn't got anything to do with TSW, but bear with me...). As an asthmatic, I first dismissed it as a worsening in my symptoms due to recently decorating my bedroom, or the fact that my son has recently had tonsillitis. However, now it has gone on for 3 weeks, I am getting worried.
My doctor said it is a chest infection and gave me antibiotics, telling me to return promptly if there is no improvement to get a chest X ray. I was telling my friend about this, when she mentioned the likelihood of being prescribed steroid tablets to treat the condition. Apparently, her asthmatic son used to get repeated chest infections and the doctor always gave him a short course of steroids.
*Cue alarm bells*
This put a huge question into my mind (which I will illustrate by using huge letters!):
I posted my question on the Itsan forum and the lovely Kelly Palace decided to email Dr Rapaport to find out his opinion. here is the response:
My doctor said it is a chest infection and gave me antibiotics, telling me to return promptly if there is no improvement to get a chest X ray. I was telling my friend about this, when she mentioned the likelihood of being prescribed steroid tablets to treat the condition. Apparently, her asthmatic son used to get repeated chest infections and the doctor always gave him a short course of steroids.
*Cue alarm bells*
This put a huge question into my mind (which I will illustrate by using huge letters!):
Do Steroid Tablets "reset" the withdrawal process in Red Skin Syndrome?
In other words, if I am prescribed oral steroids, will it send me back to square one and all the oozy redness of the early months, because I really cannot go back to that place.I posted my question on the Itsan forum and the lovely Kelly Palace decided to email Dr Rapaport to find out his opinion. here is the response:
"If the doctors use the word "infection" then there is no place for steroids- just antibiotics- if it is asthma etc let them try other drugs first- she will flare if steroids are used- if it is life and death then we live with a little more flaring for a while Always steroids as a quick fix- go at it from a different approach."
A great point to remind everyone here that we have talked about before....if doc want to use antibiotics then steroids should not be used!
Thanks to both Kelly and Dr Rapaport for clarifying the situation. It seems that if I take oral steroids I will flare up. It is a good idea to have a balanced approach to this and as Dr Rap suggests, not to dismiss oral steroids completely if the situation is life or death.
Luckily, I don't think I am ready to keel over just yet, so I think I will go for the "no steroids" approach if they offer it. I actually think that the troublesome cough is likely to be whooping cough, in which case I think it is unlikely that they would offer steroids, but it is always best to be prepared and have an answer in mind for every possible eventuality.
Thank you Itsan.
Friday, 10 August 2012
Day 274: Red Skin Syndrome Features on News!
Sorry it's been a while since I posted anything. The kids are off school and we have been making the most of the good weather. Lots of big days out in the sunshine are a sure sign that I feel well and that TSW is having no impact on my life whatsoever.
It was great to see that the news networks have finally picked up on TSW/Red Skin Syndrome.
Fox News ran a story on their local news in LA yesterday.
The story features a lady who was healed completely and two children who are going through steroid withdrawal. All are doing well.
I hope that more news networks run stories like this and get the word out about steroid cream addiction.
It was great to see that the news networks have finally picked up on TSW/Red Skin Syndrome.
Fox News ran a story on their local news in LA yesterday.
The story features a lady who was healed completely and two children who are going through steroid withdrawal. All are doing well.
I hope that more news networks run stories like this and get the word out about steroid cream addiction.
Saturday, 4 August 2012
Day 268 Different Names for TSW
Here is another link to an interesting article about TSA
https://pubmed.ncbi.nlm.nih.gov/19445310/
I think half of the problem with Red Skin Syndrome is the fact that it has so many names. This article, for instance, calles it "steroid induced roseacealike dermatitis".
Another site that I was on today called it "Facial Corticosteroid Addictive Dermatitis".
There are at least 10 other names for topical steroid addiction. We need a universal name here, folks. Otherwise, searching for articles on the subject can be a nightmare.
https://pubmed.ncbi.nlm.nih.gov/19445310/
I think half of the problem with Red Skin Syndrome is the fact that it has so many names. This article, for instance, calles it "steroid induced roseacealike dermatitis".
Another site that I was on today called it "Facial Corticosteroid Addictive Dermatitis".
There are at least 10 other names for topical steroid addiction. We need a universal name here, folks. Otherwise, searching for articles on the subject can be a nightmare.
Thursday, 2 August 2012
Day 266
I've gone into a bit of a micro-flare. Nothing too serious, but a bit of a step back. It's like my skin saying:
"Hang on a minute, don't get too confident. I'm not quite finished with you yet".
My face isn't burning, just a little more flushed than it has been recently, with a bit of flaking on my cheeks. I expect it to pass pretty soon. I am trying to get some sun on my skin, but it has started raining again.
Boo.
My skin is quite good on the rest of my body. I know complete healing can't be too far away now.
"Hang on a minute, don't get too confident. I'm not quite finished with you yet".
My face isn't burning, just a little more flushed than it has been recently, with a bit of flaking on my cheeks. I expect it to pass pretty soon. I am trying to get some sun on my skin, but it has started raining again.
Boo.
My skin is quite good on the rest of my body. I know complete healing can't be too far away now.
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