Thanks brave Laura for sharing your story and raising awareness. I love that TSW has been in the news so much lately. The world needs to know about this!
http://www.dailymail.co.uk/health/article-3350782/Eczema-patient-spent-20-hours-day-bath-soothe-flaking-skin-suffering-severe-reaction-stopped-using-steroid-creams.html
Tuesday, 8 December 2015
Monday, 30 November 2015
Observations on my Moisturiser Withdrawal Regime
A couple of weeks ago, I wrote about my desire to give moisturiser withdrawal another try, even though I'd struggled with it in the past. The reason for this was because I found that my skin was reacting to everything and needed a break.
I'm trying to follow Dr Sato's guidelines strictly, as he has had proven success using this method with his TSW patients. He has quite a strict interpretation of what constitutes moisturiser use so I'm using the Sato method to the best of my ability.
These are some of Sato's rules:
No cosmetics: Not an issue for me, as I haven't worn any makeup in a couple of years.
No moisturisers at all: I've been a good girl and followed this to the letter.
No long soaks in the bath: I've been a bit naughty with this because I do love a long bath and my other vice is that I like my water hot. I redeemed myself a little by having a full bath as infrequently as possible and just wiping over my skin with plain water or Epsom soap to maintain good hygiene.
No picking scabs: I'm getting better at this one and it's REALLY important. It's so tempting to pick a scab or a big skin flake, but it does you no favours, the skin underneath is usually raw and wet and the whole process will start again. Leave it alone! My biggest problem is scratching off scabs and flakes in my sleep. I don't really have much control over that.
In conclusion, I've been pretty good following Sato's regime and I'm pleased to say that even as early as two weeks in, I'm seeing results! The redness is largely gone and skin flares seem shorter in duration. The large skin flakes have been replaced with smaller ones, which make the skin look a little dry, but not blotchy or red. It's a fair compromise.
The downside is the itch, which can be bad at night and sometimes I damage my skin in my sleep. Hopefully this will be less of an issue with time.
The plus side is the improvement in my skin and the savings I'm making on skin products!
So those are my observations, two weeks into MW. I'm not going to lecture anyone or make people feel bad about moisturising, as the decision to moisturise is a very personal one. If moisturisers are helping your TSW then do what you need to for comfort. However, in my case my skin was reacting to absolutely everything, so this was a signal to stop. My experience with MW this time round has been very different to when I tried it in 2013. It was really horrible then and my skin was cracked and bleeding. This time round, my skin seemed ready for it and discomfort has been minimal.
4 years in and this is a new phase for me. Maybe a final push toward healing.
I'm trying to follow Dr Sato's guidelines strictly, as he has had proven success using this method with his TSW patients. He has quite a strict interpretation of what constitutes moisturiser use so I'm using the Sato method to the best of my ability.
These are some of Sato's rules:
No cosmetics: Not an issue for me, as I haven't worn any makeup in a couple of years.
No moisturisers at all: I've been a good girl and followed this to the letter.
No long soaks in the bath: I've been a bit naughty with this because I do love a long bath and my other vice is that I like my water hot. I redeemed myself a little by having a full bath as infrequently as possible and just wiping over my skin with plain water or Epsom soap to maintain good hygiene.
No picking scabs: I'm getting better at this one and it's REALLY important. It's so tempting to pick a scab or a big skin flake, but it does you no favours, the skin underneath is usually raw and wet and the whole process will start again. Leave it alone! My biggest problem is scratching off scabs and flakes in my sleep. I don't really have much control over that.
In conclusion, I've been pretty good following Sato's regime and I'm pleased to say that even as early as two weeks in, I'm seeing results! The redness is largely gone and skin flares seem shorter in duration. The large skin flakes have been replaced with smaller ones, which make the skin look a little dry, but not blotchy or red. It's a fair compromise.
The downside is the itch, which can be bad at night and sometimes I damage my skin in my sleep. Hopefully this will be less of an issue with time.
The plus side is the improvement in my skin and the savings I'm making on skin products!
So those are my observations, two weeks into MW. I'm not going to lecture anyone or make people feel bad about moisturising, as the decision to moisturise is a very personal one. If moisturisers are helping your TSW then do what you need to for comfort. However, in my case my skin was reacting to absolutely everything, so this was a signal to stop. My experience with MW this time round has been very different to when I tried it in 2013. It was really horrible then and my skin was cracked and bleeding. This time round, my skin seemed ready for it and discomfort has been minimal.
4 years in and this is a new phase for me. Maybe a final push toward healing.
Monday, 23 November 2015
4 Year Anniversary Post
Well I finally made it 4 years into TSW.
Sadly, I'm not healed. I thought I would be by now, but I'm not.
On the positive side, TSW isn't really preventing me from doing anything. I can do jobs, go out and day trips and socialise. My skin isn't in such a terrible state that it holds me back in any way.
On the downside, it's still far from perfect. The moisturiser withdrawal is helping a lot and my skin isn't in an active flare, but it doesn't look completely normal. It's still dry and blotchy with uneven tone.
The last year has been a hard one for me in TSW, as my progress seemed to go backwards rather than forwards. Back at the 21 month point my skin was almost perfect, but months 37-48 have been much harder and that has been hard to deal with psychologically.
At 4 years in, I thought I'd have all the answers, but I seem to have more questions! I form a hypothesis and believe it and then something blows it out of the water and changes everything.
I know TSW is not as simple or linear as I expected it to be in the beginning. I expected gradual improvement and progress, but my progress has been all over the place. Why? I have no idea, but everyone else seems to be the same too.
I read that Dr Rapaport has reported seeing longer healing times in his patients due to increased usage of potent steroids in recent years. What we thought would be a 12-18 month healing process can take 5-7 years, maybe more, who knows?
I remain strangely optimistic, even at 4 years in. TSW is not so unbearable that I can't cope and I'm grateful for that. I read a story recently of someone who healed completely at the 5 year mark, so maybe this time next year I will be done with this.
I usually make a big deal of my anniversary posts by writing a special blogpost or writing a month by month analysis of the preceding year. I think I will be more understated this time round. I feel like I've already said everything that needs to be said.
My big goal this coming year will be converting from my current steroid inhaler to a cromolyn preventer. I don't know whether my doctor will let me do this yet, and I'm not even going to attempt it until the weather improves, as winter is a tough time for me. I scared that being completely steroid free may put me into a secondary withdrawal, but I'll cross that bridge when I come to it.
I probably won't be blogging much over the coming year; just the odd photo update and any news that happens to be of interest.
I'm sure that opponents of TSW will be taking this opportunity to have a good laugh at my expense and consider me a lunatic for persisting for 4 years with no immediate resolution in sight. I couldn't care less what they think. I'm glad to be off the steroid creams and it doesn't bear thinking about the amount of tubes I would have gotten though in the last 4 years if I hadn't stopped when I did. That has to be better for my long term health than being dependent on the 'roids. Has it been tough? Yes, at times, but most the time my skin has just been stagnant and not too much bother. I'm happy with the decision I made and I remain determined to be steroid free, whether I eventually heal or not.
Best wishes to everyone going through this. Here's hoping that the coming year will bring increased awareness in the medical community and doctors will stop being so quick to prescribe steroid cream as the answer to everything.
Sadly, I'm not healed. I thought I would be by now, but I'm not.
On the positive side, TSW isn't really preventing me from doing anything. I can do jobs, go out and day trips and socialise. My skin isn't in such a terrible state that it holds me back in any way.
On the downside, it's still far from perfect. The moisturiser withdrawal is helping a lot and my skin isn't in an active flare, but it doesn't look completely normal. It's still dry and blotchy with uneven tone.
The last year has been a hard one for me in TSW, as my progress seemed to go backwards rather than forwards. Back at the 21 month point my skin was almost perfect, but months 37-48 have been much harder and that has been hard to deal with psychologically.
At 4 years in, I thought I'd have all the answers, but I seem to have more questions! I form a hypothesis and believe it and then something blows it out of the water and changes everything.
I know TSW is not as simple or linear as I expected it to be in the beginning. I expected gradual improvement and progress, but my progress has been all over the place. Why? I have no idea, but everyone else seems to be the same too.
I read that Dr Rapaport has reported seeing longer healing times in his patients due to increased usage of potent steroids in recent years. What we thought would be a 12-18 month healing process can take 5-7 years, maybe more, who knows?
I remain strangely optimistic, even at 4 years in. TSW is not so unbearable that I can't cope and I'm grateful for that. I read a story recently of someone who healed completely at the 5 year mark, so maybe this time next year I will be done with this.
I usually make a big deal of my anniversary posts by writing a special blogpost or writing a month by month analysis of the preceding year. I think I will be more understated this time round. I feel like I've already said everything that needs to be said.
My big goal this coming year will be converting from my current steroid inhaler to a cromolyn preventer. I don't know whether my doctor will let me do this yet, and I'm not even going to attempt it until the weather improves, as winter is a tough time for me. I scared that being completely steroid free may put me into a secondary withdrawal, but I'll cross that bridge when I come to it.
I probably won't be blogging much over the coming year; just the odd photo update and any news that happens to be of interest.
I'm sure that opponents of TSW will be taking this opportunity to have a good laugh at my expense and consider me a lunatic for persisting for 4 years with no immediate resolution in sight. I couldn't care less what they think. I'm glad to be off the steroid creams and it doesn't bear thinking about the amount of tubes I would have gotten though in the last 4 years if I hadn't stopped when I did. That has to be better for my long term health than being dependent on the 'roids. Has it been tough? Yes, at times, but most the time my skin has just been stagnant and not too much bother. I'm happy with the decision I made and I remain determined to be steroid free, whether I eventually heal or not.
Best wishes to everyone going through this. Here's hoping that the coming year will bring increased awareness in the medical community and doctors will stop being so quick to prescribe steroid cream as the answer to everything.
Sunday, 15 November 2015
Going to Give Moisturiser Withdrawal Another Try
I feel lucky inasmuch as I've been able to tolerate moisturisers throughout most of my TSW process. In the early days, this was a real lifeline to me and enabled me to cope with everyday situations with more confidence. I was able to use a variety of oils and creams with no adverse effects at all.
HOWEVER...all that seems to have changed recently. It started with my beloved hemp cream, that I've used as the main cream during withdrawal. Suddenly my skin started to react badly to it and itch terribly when I applied it. Over the following months I had the same result with all moisturisers. It seems to be a type of hypersensitivity reaction.
Therefore, I have decided to give moisturiser withdrawal another go. I tried it a while back and didn't like it, but I feel like I have no choice now as creams feel horrible on my skin. I know that Dr Fukaya said that hives and sensitivity were a sign of final healing, so maybe this is the last push before my skin heals completely. It's actually not feeling too bad right now and I'm preferring the dry feeling to the itchy wet feeling.
According to Tommys Skin of Rose blog, Dr Sato says that: 'moisturisers' here mean using emollients, creams, lotions, oils, thick bandages, staying in bed all day, taking a long/frequent bath, make-up, picking up scabs, wiping off ooze and drinking too much water. I hope to follow this as strictly as I can, although I do love a long bath!
HOWEVER...all that seems to have changed recently. It started with my beloved hemp cream, that I've used as the main cream during withdrawal. Suddenly my skin started to react badly to it and itch terribly when I applied it. Over the following months I had the same result with all moisturisers. It seems to be a type of hypersensitivity reaction.
Therefore, I have decided to give moisturiser withdrawal another go. I tried it a while back and didn't like it, but I feel like I have no choice now as creams feel horrible on my skin. I know that Dr Fukaya said that hives and sensitivity were a sign of final healing, so maybe this is the last push before my skin heals completely. It's actually not feeling too bad right now and I'm preferring the dry feeling to the itchy wet feeling.
According to Tommys Skin of Rose blog, Dr Sato says that: 'moisturisers' here mean using emollients, creams, lotions, oils, thick bandages, staying in bed all day, taking a long/frequent bath, make-up, picking up scabs, wiping off ooze and drinking too much water. I hope to follow this as strictly as I can, although I do love a long bath!
I'd appreciate feedback from anyone who has tried MW, especially if you have any tips. This is all new for me, so voices of experience are welcome.
I'll be posting an update soon, especially as I'm near my 4 year anniversary.
Best wishes to all.
Friday, 13 November 2015
Steroid Cream in the News...Again.
Well done my husband for spotting another article about steroid withdrawal in today's Daily express.
When he read it, he said "her hands look like yours!"
The poor lady was using 12 tubes of steroid a WEEK, which her doctor seemed quite happy to prescribe. Thank goodness she managed to get off them.
Wishing her a speedy recovery.
When he read it, he said "her hands look like yours!"
The poor lady was using 12 tubes of steroid a WEEK, which her doctor seemed quite happy to prescribe. Thank goodness she managed to get off them.
Wishing her a speedy recovery.
Monday, 19 October 2015
Itsan Representatives Attend Major Dermatology Conference
Itsan was pleased to announce that two of its members got to attend a four-day conference run by the American Academy of Dermatology Association. During the conference they got to speak to many dermatologists, a large portion of whom had not heard of Red Skin Syndrome and Topical Steroid addiction. They received a number of business cards from dermatologists keen to learn more about the condition.
You can learn more about the AADA conference here.
You can learn more about the AADA conference here.
Wednesday, 14 October 2015
Itsan Forum Reaches 3000 Members!
I just logged on today to see that the Itsan forum membership is now 3002 and rising every day. We have come such a long way in such a short time.
I'm also pleased to see that the main TSW discussion group on Facebook is almost at 5000 members and there are other, smaller discussion groups on there too, as well as dedicated areas on the British skin foundation forum, talk health and eczema voice websites, to name but a few.
This is in addition to over 100 blogs on the subject of topical steroid withdrawal. Everyone who has contributed to the discussions online has helped get the information out there. The good news is that our collective shout-out has now got the medical community paying attention and doctors are starting to get on board and take us seriously.
Let's keep the discussion going, people. The word is getting out but there are SO many more people who need to be reached. When TSW is recognised by medical professionals worldwide as a real medical condition, we can be proud that we had a part in telling the world about this terrible affliction.
I'm also pleased to see that the main TSW discussion group on Facebook is almost at 5000 members and there are other, smaller discussion groups on there too, as well as dedicated areas on the British skin foundation forum, talk health and eczema voice websites, to name but a few.
This is in addition to over 100 blogs on the subject of topical steroid withdrawal. Everyone who has contributed to the discussions online has helped get the information out there. The good news is that our collective shout-out has now got the medical community paying attention and doctors are starting to get on board and take us seriously.
Let's keep the discussion going, people. The word is getting out but there are SO many more people who need to be reached. When TSW is recognised by medical professionals worldwide as a real medical condition, we can be proud that we had a part in telling the world about this terrible affliction.
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