Day 131 My Daily TSW Cycle

My skin seems to have gone into a daily cycle of flare and calm. This is how it usually goes:

Morning: I wake up and my skin is pretty dry. There is very little redness and, usually a lot of flaking around my mouth and neck. usually have to moisturise the backs of my legs and my elbow flexures so that I can move properly. My eyes are sometimes a bit gooey, but this passes quickly. Once I have had a mad dash getting kids ready for school, I try and rest up as much as possible.

Early Afternoon: Lunchtime is when I feel my best. The initial tigtness has gone and my skin feels OK. This is when I can get jobs done, as my energy levels are peaking.

Late Afternoon: Once I go to fetch the kids, I am on my feet for most of the afternoon, causing slight swelling in my legs. By the time I have got the dinner on the table, my skin is starting to go redder and my legs ooze a little.

Evening. By the evening, around 8:00 p.m. my skin is at its worst. I start shivering and juddering and my body gives off a lot of heat. I have to sit down with my legs up, as my leg swells slightly.

Night: By the time I go to bed, my skin is usually in a  mild flare and pinky-red all over. My neck is also a little swollen. I put on a light layer of moisture before bed, and put dressings on my weepy patches of my legs. In the night my neck oozes quite a lot of fluid. I have to use towels, pillowcases or scarves around my neck. I often wake up at 2 or 3 in the morning, which I think is due to adrenal fatigue.

By the morning, my skin is calm again...

Day 130 (photos)

Feeling Ok today, but trying to stay out of the bright sun. I thought I would post some more progress pictures.

So as you can see, my face is not too bad. Slightly pink but not too bad! My neck is slightly raw but has a bit more movement than yesterday. I wouldn't be embarrassed to go out in public with my skin like this. I am using a bit of hemp cream to combat the flakiness but I am trying to use the smallest amount I can get away with, because I don't want to cause a skin reaction. The facial skin tends to go through a flushing and flaking cycle.

This is an updated picture of my calf area, where I have had a bad leg wound for a couple of months (see my previous photo entries). These weepy leg wounds are really hard to get rid of, but I have been following the moist healing method and using vaseline and a dressing on the wound every day. The picture shows that the skin is returning to normal on my leg and there is no "wound" any more, although I have another similar patch on my right leg, which is also responding well to the moist healing.

All in all the skin is pretty good and improving daily. My neck is still oozing at night, so last night I used a silk scarf to combat the wetness. My sleep pattern is slightly disrupted due to the oozing skin. I am trying to exercise more and eat less to combat the weight gain I have experienced due to sitting on the sofa a lot during my withdrawal! Weighed myself this morning and I have lost a pound, so it is all good!

I contacted the British Skin Foundation about Red Skin Syndrome and my experiences with the condition. I am really interested to hear what they have to say on the issue.

Day 129 Exercise and TSW

I'm feeling a bit fragile today. The skin on my face burned slightly when I woke up. This could indicate a flare. It is really hard to tell. All of my skin feels a little sore and raw. I'm flaking a lot around my neck and limb flexures.

I weighed myself yesterday for the first time in ages and was horrified to see that I had put on 5lb since quitting steroid creams at the end of November, especially as most people lose weight during steroid withdrawal. I think it is because I have had to slow down my daily activities considerably and I have also been ravenously hungry during bad skin flares, which is a bad combination!

I tried to do a workout on the Wii yesterday to try and combat the weight gain. it was a bit of a disater. First of all, I didn't realise how stiff my neck was until I tried exercising. The skin was so tight on my neck that I had to hold it rigid, which was really uncomfortable. My leg and elbow flexures are also tight and sore, so dancing around the living room was going to hurt! I gave up after 5 minutes. I am monitoring what I eat and trying to take more gentle exercise to stay active. I used to take the kids to school in the morning, which was a good, 30 minute walk, but my husband does it now, as my skin is always worst first thing in the morning, but losing this morning workout has obviously impacted on my weight.

Exercise is hard when you can't move your neck or limbs!

Day 128 Seeking Sunshine

Slept a lot better last night, although my neck was still weeping fluid.

The wet areas all dried powdery this morning, so this means I am not in a flare, thank goodness. I rested up most of yesterday and took a long walk at sunset to get a little sun on my skin without burning.

My skin is OK, not great, but not in a flare either. It feels a little sore and irritated, but tolerable. The worst areas are my neck and behind my ears. My scalp is also flaky and itchy. I am confident that things will get better. Some members of the Google group have now reached a level of considerable improvement and are posting their success stories, which is of great encouragement to me.

Day 127 Sticky Skin

Just when I though everything was going so well.....

I had a really oozy night last night and got hardly any sleep. My neck, bra-line and chest were leaching sticky fluid and it was also coming out of my chin and jawline, as well as from behind my ears. I kept turning over in the bed to try and get comfy, but it was impossible, as my skin felt so damp. I also had problems with my eye, which was swollen up as if I'd had an allergy.

It has all dried up this morning as soon as the air got to it, but my hair is all matted up behind my ears and needs a good wash. I can detect a faint metallic smell coming from the oozy areas. I don't know how apparent it is to anyone else or whether only I can smell it.

I'm not sure whether this is flare number 7 starting, or just a minor blip. I will find out over the course of the next few days. I just know that rather than waking up all dry and flaky, my skin was wet and sticky, so it looks like a bad sign. I am going to rest up completely today in the hope that it won't develop into a full blown flare and set me back again after I was doing so well.

Day 126 Muscular Pain

Had a lovely day yesterday and took my little boy for a bike ride in the sunshine. I'm hoping the sun on my face and arms will help my skin.

The skin is pretty calm, but shedding a lot. I'm leaving a trail of flakes everywhere. I can't believe how much dead skin I am losing. I am sure that if I swept it all up, I could build a clone of myself out of it all!

I'm have had a bit of muscular pain in my neck due to holding my neck so stiff because the skin has been dry. I'm using lots of moisturiser on my neck area to try and lubricate the skin so that I can turn my head better.

I can now take long walks and have lots of energy. I simply couldn't have done this a few weeks ago. I'm still drinking lots of dandelion and burdock tea because it really seems to be making a difference.

Day 124 Managing to Do Normal Activity

Still feeling great!

I went to town this morning and round the shops. Did not feel self conscious in the slightest.

I went out and did some voluntary work in the community this afternoon. It was a public facing role and again, I had bags of self confidence.

The sun is out so I am going to get some sun on my arms when I go to fetch the kids later.

My skin is tolerating moisturisers better, so I am using moisturising creams slightly more often to keep the skin supple. I'm still flaking quite a lot, with lots of flakes all over the surfaces and floors. I am having to hoover all the time! My neck is still oozing slightly and I also have an oozy patch behind my ear when I sleep on it.

I am happy.

Day 123 Great Healing Progress

Things are getting better and better!

I am now 4 months off the nasty steroid creams and I can honestly say that at this point my skin looks the same as it did when I was using the creams. For me, this is a crucial point in my healing.

My energy levels are good, and my body is 70% healed. I have no eczema on my back, upper arms or torso. I have pale pink skin on my lower arms that is almost healed. My neck is still pink, but healing and my face is peeling slightly but looking better. I am still treating my leg wounds with moist dressings and they look a lot better today too.

A few months ago, I did not imagine that this would be possible.

I am hoping I am over the worst, but cannot be completely sure. Flares are nasty and unpredictable things but I am really enjoying myself at the moment now that my skin is calm.

I am not sure what effect the dandelion and burdock tea has had, but since I started drinking it, the flares have gone right down. I read a lot of evidence that dandelion and burdock can lower nitric oxide levels. Nitric oxide is what causes the blood vessels to dilate and the skin to flare up. Anyway, it may be a coincidence, but I am sticking with the tea, as it is yummy and my skin has been great while I have been drinking it. I have about 5 cups a day.

The only bad symptom I have at the moment is that I go shivery at about 8:00 p.m. and need a blanket and hot drink. I know shivering is a symptom of TSW, so I am not overly worried. It is irritating more than anything.

Day 122 (photos)

I thought I would post my latest photos:

I tried smiling on this one for a change! I still have such a long way to go and the skin on my chin is the worst as it is flaky and a bit weepy. My neck is still looking raw, although it doesn't actually feel that bad today, it has more elasticity lately, which is good. I had to go out this morning as I had arranged to meet my friend and I had a complete meltdown before I went out as I felt so ugly. I managed to get it back together, go out and have lots of fun. I will not let my skin rule me. By the way, the photo does make the skin look worse than it actually is. Bad lighting I think!

My arm is looking pretty good, with only a few small blotches. The backs and tops of my arms are now completely normal skin. I have seen so much improvement in these areas. I am very happy and it means that now the sun is out, I can bare my arms without feeling like I have the plague!

My leg on the other hand, is still oozy and I keep getting weepy patches forming on my legs. I find it best to keep them moist and covered with a dressing. The ooze is yellow coloured but is not infection. The yellow ooze is the hardest to get rid of.

This is the back of my right leg and is by far the worst part of my body at the moment. The skin is very peely and oozy and covers quite a large area. I have to wear long skirts to keep my legs covered, or trousers, as this is very unsightly. Luckily, it is not affecting the flexure at the moment, which means that I can bend my knees comfortably, which I could not do a month or so ago.
The best thing is that I FEEL great, and as long as I moisturise my flaky face and put dressings on my legs, I can still get out and have a normal life. I know that things will continue to improve for me. I have come so far already.

Day 121 Living Life

Feeling great. Getting out and about.

I'm not letting my skin stop me doing stuff anymore.

Day 120 Comments From “Friends”

Had a great weekend. I took my daughter to see Disney on Ice and went for a pizza afterwards. Skin was not even an issue.

I'm finding the withdrawal process slow and frustrating. My face has been peeling a lot and I think this may be due to the sunshine that we have been having. At night, my neck and scalp ooze fluid. I still have mild edema in my legs and wet wounds on my leg flexures. My eyes are slightly puffy and gooey.

Some days I don't feel any further forward than I did at the beginning, but I know I am because I have more energy than I did back then. I'm also able to go out and do more things without my skin stopping me. It still doesn't stop me feeling self conscious though. Yesterday we were going out and I started crying because I felt like a freak and thought that people were going to focus on my skin. I still went out though. My friends don't "get it". They think I have eczema and that I can cure it with creams, diet or sunbeds. one friend said I wasn't so happy or giggly anymore since I came off steroids and that I should use double the amount to get my old personality back!

I think I need a T shirt that says "This isn't eczema. it is Topical steroid withdrawal". People, well meaning as they may be, just don't understand. Even after I explain, they still think I have eczema!

Day 117 Tight Skin and Swollen Eyes

Still in a flaky phase, which I don't mind, but it is a bit embarrassing, as my face is really dry. I'm not going to be gracing the cover of Vogue any time soon.

The skin seems relatively calm, but tight in the flexures of my elbows and knees. My neck is still the worst area, although it is looking less red. It is very flaky and is still oozing at night, although perhaps a little less than previously.

I went to visit my mother in law and she asked if I had a stiff neck. I was laughing and explained it was my skin on my neck. It was so tight I couldn't turn my head and I was holding it stiff. I used a lot of steroid cream on this area in the past, so I know it will take a long time to heal.

It is quite scary how my eyes have been swollen. This is a common symptom of TSW. Somehow the steroid creams used on the face must have affected my eyes too. I'm glad I got off the creams, otherwise I could have ended up with glaucoma. My eyelids are weepy and saw and my actual eyeballs are swollen, like when you have an allergic reaction to something and the cornea swells. It isn't so bad today though. Antihistamines help.

A friend of ours said I should just use the steroid creams and get my life back. I don't agree. When I heal, whether it be a year from now or maybe more, I will have my life back. A life without eczema. If I had stayed on the steroids, my body would have just gotten used to them and needed stronger and stronger preparations. Besides. although the steroid withdrawal is quite disabling, I still try to lead as normal a life as possible. I go out, fetch the kids from school, go shopping and socialise. Steroid withdrawal isn't the end of the world by any means, although it can be a tough road to travel. Having so many skin friends on the google group who are travelling the same road really helps. They are such great people, all at different stages in the healing process.

Day 116 ITSAN is go!!!!

My skin is still very dry and papery, which I don't mind too much. It is a nice change from the red flare.

The skin is very sensitive. Last night it even reacted to the cetaphil that I used to clean my face. It will not tolerate anything on it at all. It got some sun, which I don't think did it any good. I still think I am too early in withdrawals to tolerate sun on my face.

ITSAN is moving on apace. Kelly has had some cards made up:

I am going to print off some cards and take them to my local doctors surgery. If topical steroid addiction has affected you, please save the image above to your computer and print off some cards yourself to distribute at doctors surgeries, pharmacies and hospitals. We need to get the message out there and stop the suffering.

Kelly has used the image of the red arm and white palm, which is so characteristic of steroid withdrawal. Everyone who is addicted and stops using steroid creams will develop this symptom within the first week or so of withdrawal. It is a good way to tell whether what you are suffering from is indeed TSW or Red Skin Syndrome.

I am really excited about ITSAN, the International topical steroid addiction network. I think that it is a good way to educate people about the dangers of steroid cream overuse.

Day 115 Scratching Tip

I was dreading waking up this morning because when I woke up yesterday my skin was stinging badly and I had a pretty rough day.

Happily, I woke up this morning with very dry, shedding skin which would seem to indicate the end of flare number 6 FINALLY!!!

I am still trying to go without creams completely. I think any kind of cream is setting my progress back too much. I need to just let the skin make its own oil. The only danger is scratch damage, as when the skin is dry like this, it gets very itchy. A good tip is to look at the skin while you are scratching it. This prevents you from scratching too deep or for too long.

I'm glad my skin feels OK today, as the kids have an event on at school and I didn't want to miss it. I'm missing too much lately.

Day 114 Dandelion and Burdock Tea

Ever since I started withdrawal I have had clearly defined periods of flare and calm, but this last flare, flare 6, has had me puzzled. It seems to be a longer flare, but on a slower burn, so it is tolerable, but not calm.

I was glad that I didn't wake up with wet hair this morning, but I still had some wetness around my neck, which has dried tight. I am really limiting the use of any creams to when I absolutely need them. If I can do without them, I will, but just add a very thin smear to allow joint movement when the skin is really tight or prone to split.

The skin looks calmer today and my face isn't so burning hot. I've started drinking dandelion and burdock herbal tea after finding a lot of evidence on the internet that shows that these two ingredients can lower nitric oxide levels and calm inflammation. The tea tastes gorgeous, so even if it doesn't help my skin, I can enjoy the flavour of the tea!

Next week I will be hiting the 4 months off steroids mark. I am hoping that by 6 months, I will be over the worst of it and well on my way to full recovery. I spent a lot of yesterday looking up articles on the dangers of steroid creams for Kelly's new site. The main point I gleaned from the medical articles available is that steroid creams are NOT safe to use for prolonged periods. If you are considering using steroid creams, look at the photo evidence on this blog and the other blogs on my links about steroid overuse and exercise caution. Be sure to heed the advice on the warning labels that come inside the box, otherwise the skin may become addicted.

Day 113 (photos)

My skin was oozing very badly in the night and at one point I woke up with  a soaking wet neck and chest. It was very unpleasant.

When I finally got up for the day, my hair was matted up with sticky ooze, which dried flaky in the hair. The whole of the back of my scalp was wet. I hope that the oozing stage will end soon. I have been oozing pretty much non stop for almost four months now, although I have had calm skin times in between. It is good to read about people on the google group who have come through the other side of the oozing stage and I hope that it happens to me soon.

I haven't put any photos on the site because I don't think there is any change in my skin, but for the sake of continuity I have taken two this morning.

The skin on my chin and neck is blotchy and flaky and still sore. At night it oozes clear fluid, like sticky sweat, which dries to a powder . I suppose, looking at the photo, it looks less red and angry than previously, but it still is a long way from healing. My face feels hot today, so flare number 6 is still holding on tenaciously.

My arm is looking quite a lot better, but is still dry and flaky. The skin is not normal, but it is not burning and red, so it gives me hope that this area is constantly improving, albeit very slowly. Skin colour is returning to normal and my arm has no oozing, unlike my neck.

I'm excited about the work that Kelly Palace is doing to start up ITSAN. Hopefully, the new resource site should be up and running in a few weeks, which will be great for people like me who are coming off the steroid creams. I hope my blog shows people what damage misuse of these creams do to the skin, and if someone is considering starting to use steroid creams on a patch of eczema, they should be aware of what could potentially happen to their skin with prolonged use of the creams.

Day 111 Dandelion Tea for Nitric Oxide

My skin was pretty flaky when I woke up, rather than oozy, so I think the flare could be near its end.

I managed to have a normal day, and get out and about as usual, so my skin is not having a massive impact on my quality of life.

I did a bit more research since my breakthrough yesterday about dandelion, and found out that burdock, a popular accompaniment to dandelion in drinks, is also known to reduce nitric oxide and inflammation. I have ordered some dandelion and burdock herbal tea, in the hope that it may do some good. If it doesn't work, I still get a nice drink, and maybe some nutritional benefit, so I have nothing to lose.

We should be moving house in the next few weeks, so I hope my skin doesn't go in a big flare.

Day 110 High Nitric Oxide and Oozing

The oozing is getting worse. My neck and chest were soaking wet when I woke up this morning and my scalp is wet and raw at the back. There is also yellow goo coming out of the back of my ears.

I had to go on a 3 hour course this morning, so put plenty of cream on before I went out. I still felt pretty self conscious though.

The kids wanted to go swimming, but my skin is too raw to go in the water. It seems a shame that my skin condition has to impact on their happiness.

Dr Rapaport says that the withdrawal symptoms are due to the high levels of nitric oxide in the blood. I did some research online and found an article that suggests that dandelion may be useful for reducing NO levels. I'm off to get some dandelion tea!

Day 109 Setting Up ITSAN

Flare 6 is still going, which surprises me, as usually my flares are limited to a week. I wonder if this one is going to be a 2 or 3 weeker. I feel a bit cheated this time, as I only had a few good skin days between flares number 5 and 6 and I would love some more good skin days.

Once I got the kids off to school, I was straight into the bath for an hour long soak in epsom salts. I really needed it, as my skin was very wet and I was starting to notice the "smell of death"!

My hair is all sticky with ooze. I may need to get it cut again. I also have a new oozy patch on  my chin, and the back of my neck is damp. Ugh.

I have parents evening later at the school. I think I will stick a paper bag on my head for that!

I just wonder when this thing will peak. I want to get to the stage where I am over the worst of it. Some say 6 months. That seems a long way away.

On a positive note, Kelly, the founder of the addictedskin website, is starting up an organisation called ITSAN, International Topical Steroid Addiction Network. The aim of ITSAN will be to educate people about the dangers of topical steroid addiction. I feel passionately about this. Just look at the photos on this blog to see what overuse of steroid creams can do to your skin. I wouldn't wish this on anyone.

Day 108 Flaky Hair

Flare number six seems to be dying down a little. I'm hoping that I will be feeling well tomorrow. I really feel like I need a break from the flares.

The flares seem to be on the move, and for the first time, I am getting flares on the back of my neck and on my scalp. I think it has something to do with sweating when I am asleep, but every morning, the back of my neck is raw, and my scalp is all wet. in some ways, it is not so bad. At least I can hide it with my hair. I'm just worried about getting lots of flakes in my hair.

My eyes are also pretty bad, as I have a crack on my eyelid which keeps weeping. It dries at night, but starts weeping again in the day. My eyelids are puffy and my eyes are runny, but I don't know whether that coincides with the start of hayfever season here in the UK and I may just be hypersensitive.

My face is also burning  and the skin is very flaky on my chin and cheeks. it feels like my face is on fire, though it doesn't look as red as it feels.

On a good note, my arms, legs and torso are doing better. I have perfect skin in some areas. Progress is slow. but that is the nature of steroid withdrawal. There is no quick fix.

Day 107 Dr Rapaport Conference Call

Still felt gooey when I woke up. My eyes are puffy and wet and my whole body was stinging when I got out of bed. I somehow think that this is going to be a long flare.

I listened to the Dr Rapaport teleconference recording today. Here is the link:

http://www.freeconferencecall.com/fcci/iTune/podcast.aspx?id=1064024&lang=en&altlang=EN

It is definitely worth listening to. A lot of useful points about steroid withdrawal are made. Dr Rapaport, who has treated thousands of patients, says that he does not know of any "magic cure" to make withdrawals go faster, and that full healing may take several years.

Day 106 Seretide

The flare is tolerable, but shows no sign af abating just yet. I dressed the wet wounds on my legs as they are still weeping profusely. My neck was still wet when I woke up. My face is burning slightly, but it feels worse than it looks.

I tried weaning myself off my seretide (advair) inhaler, as I know that I am still getting steroids in my body via the inhaler.I had managed to get myself down to one puff a day, but then my lungs started tightening and producing lots of mucus. I started tasting blood when I coughed, so I have gone back to 2 puffs a day again. I think that weaning off the inhaler may be very difficult for me and I am going to have to do it very slowly.

Maybe, and this is just a theory, my body craves the steroid from the inhaler, so my lungs are reacting badly in order to get their "fix" of steroids. I still don't know if my Red Skin Syndrome will heal completely if I am taking in systemic steroids of any sort, but there is no way I am going to mess around with my lungs.

*UPDATE 2022 I was unable to quit the steroid inhalers, however, this did not impact on my skin healing and I was still able to heal from TSW.

Day 105 Sticky Sweat

Had a problem with the "sticky sweat" last night all around my neck and chest. In the morning it dries to a fine powder and leaves the skin tight.

My skin feels very sore and uncomfortable. I'm stuck in the house again while the rest of the family go out.

My friend has invited me to go swimming on Friday. I think the chlorinated water may help my skin, but if my skin looks awful I won't go as I would be too self concious.

I can't understand why the skin seems to be oozing more these past few days. I am going to try to be positive and view it as a good sign than I am healing.

I'm 16 weeks in today. There is no going back for me now.

Yesterday the Google group had a teleconference with Dr Rapaport. I was unable to listen in, so I will be interested to hear how it went and what advice was given. Dr Rapaport has helped over 2000 people to wean off steroid creams and heal completely.

Day 103 Flare Number 6

Huh, so much for hoping that I was going to get a long break before the next flare!

Flare number 6 kicked in last night and I was so upset to see my nice white skin vanish into red, oozy blotches.

The flare is mild compared to previous ones, but very oozy and itchy. Every time I itch, I blast the area with the Zeoderm cream, which temporarily alleviates it.

I am so frustrated that my neck is oozing again, as this has been the most consistent symptom of withdrawal, and one of the most distressing. My legs also started swelling again last night, so I am having to keep them raised.

I try to view each flare like a dose of nasty medicine. I know I have to go through it to get better and that after each flare, my skin improves a little bit. It was a bit disheartening for me to read on the google group today that there are some people several years into withdrawal who are still experiencing mild flares. On a happy note, Jake, whose blog I mentioned a few days ago is almost 100% healed after using pine extract in his creams and other holistic therapies. Read his blog via the link on the right hand side of my page.