Day 357 (photo)

Yeah, I'm posting ANOTHER scabby photo, but I thought they might be interesting to anyone out there wondering what the process of TSW looks like and what a mess it can do to your face!

Here I am in all my scabby glory. Hopefully, as it is Halloween, maybe my bleeding face won't be as noticeable. People may just think I am in fancy dress as some sort of undead monster!

I have focused on the chin area because it is the worst area. Some areas of my face are slowly getting back to normal, although the whole of my face is dry and flaky. The good news is that there is no yellow crust today. So I am happy. Scabby stuff I can cope with, but yellow crust grosses me out. I think my face is slowly on the mend.

Psychologically, I am in a better place than yesterday. I actually cried all day yesterday, which left me with a thumping headache. Today, I am in more of a "get on with it", sort of moods and have got on with all the normal stuff like the shopping and school run without worrying too much about other people.

There is no doubt that TSW messes with your head. The ITSAN forum is full of tortured souls battling their way through the horror of this skin affliction. Some people with TSW have to have counselling to cope with symptoms similar to post traumatic stress disorder. The psychological effects of TSW can be as disabling as the physical ones and can make things really hard for friends and family.

My friend has invited me to her house tonight for a "girls night in", but I am not sure whether I am up to going. I will leave it up to the last minute to decide.

By the way, after my rant yesterday about going to see the nurse, I DID eventually go. She never once mentioned my skin!

Day 356 (photo)

Not much to report other than the fact that I am still yellow and crusty.

I wish I knew why my skin was like this. If I knew what was causing it, I could stop doing it.

I can't describe how embarrassed I feel. The school run is a nightmare. The other moms want to chat to me, but I feel so self conscious, I can't even look people in the eye. They will think I am dirty, having a yellow crusty face. My skin becomes the whole focus. When I go out, I wear a hood and pull my hair as far forward as it will go to hide the skin on my cheeks.

My husband says I shouldn't hide myself away and I can't stop living my life, but to be fair, he isn't the one with the skin problem. He is so used to seeing my skin, it doesn't bother him.

I am supposed to go to the doctor's later for an asthma check, but am thinking of cancelling, because she is going to home in on the way my skin looks and try and push steroids on me. I really wanted to go in and wow her with my skin, so that she would understand why I quit steroid creams. Now, she is just going to think I am an idiot for quitting the creams and getting myself into this state.

I can't sleep at night because all I can feel is wet ooze running down my face. No products seem to work. The domeboro is great at drying up the ooze, but makes my face feel like tight plastic. Vaseline makes the skin gooey and mixes with the skin flakes to make a disgusting paste. Any kind of moisturiser on the skin starts it oozing again.

Every morning I wake up and hope the flare is over, but I look in the mirror and see yellow crust.

Sorry to be so negative. I just wish I could see an end to this. A month is a long time to be flaring.

Day 353 (photo)

Looking back over the blog, I see that this face flare started on October 1st. It is now october 27th, which makes this my longest skin flare yet during withdrawals.

Here I am today:

The facial skin is covered in a fine yellow crust from the oozing. Last night I picked a tiny piece of crust away with my fingernail, but it was wet and raw underneath. The best thing is to leave it alone, but I feel so helpless doing NOTHING.

I found some packs of Domeboros in my medicine tub that fellow blogger kelou sent me a while ago. Domeboro, or Burows solution, is an aluminium acetate solution commonly used on weepy rashes. Unfortunately, it is not widely available here in the UK, although it sometimes pops up on Amazon. Many doctors treating TSW like to use Domeboro on their patients.

I made up the powder sachet in half a pint of cold water and gently applied it to my face with a cotton wool pad. The cold water felt good on my hot, burning skin. Some of the yellow flakes lifted off and I repeated the process, using a fresh pad each time. I have been able to put the jug of solution in the fridge, where I can use it for up to 7 days, so one sachet goes a long way.

Immediately after using the domeboro, my skin feels tight. But it is not weeping fluid. I do not know if it will work or not, but at least I feel like I am doing something. I hate this crust of yellow on my skin. it looks vile and I am too embarrassed to go out.

I will file a progress report soon. I really have no clue if the Domeboro will help or not.

Day 352 Eczema Charities and Steroid Manufacturers

I haven't slept properly for three nights. I can't sleep on the oozy side of my face, so have to sleep on the other side, which causes my ear to leak fluid.

I am using fucidin (antibiotic cream) on my face, but it seems to be having very little effect. The skin is covered in a fine yellow crust. If I try to remove the crust, more stuff oozes out, so I am going to have to leave it alone.

I am finding it hard to understand what is going on here. Any previous flares have been over in a week. This one keeps running. My face feels like it is on fire and is very itchy. I can't sleep. I can't socialise. I can't function.

I wish I could just relax, but the kids are off school, asking for something every five minutes. Maybe when they are back at school next week, I can relax and concentrate on getting well.

I want to know when this will end. Even if I knew it was going to be a year from now, I would be happy because I would know there was something to work towards. I wonder if my steroid inhaler is prolonging this for me, but I can't go without it.

Another thing that I found interesting this week is this report:

It is no secret that eczema charities get funding from the topical steroid companies, but this report goes further, because it states:

"Upsher-Smith Laboratories, Inc. is proud to support the National Eczema Association (NEA) during Eczema Awareness Month in October to help generate greater awareness about eczema, its treatments, and resources available to help those who suffer from the disease. Since topical corticosteroids are one of the most useful medications for treating eczema(1), Upsher-Smith is taking action to help patients by offering the Trianex(®) 0.05% (Triamcinolone Acetonide Ointment) Instant Savings Card*- offering as little as a $5 co-pay per prescription for three prescriptions of Trianex(®) – making it less expensive than some generic triamcinolones. Additionally, Upsher-Smith is expanding the Trianex(®) sample program where physicians can request free samples and have them sent to their offices"

 

Day 351 Flaky

Had a day out with the kids at the local museum. My skin felt terrible, but at least I was anonymous.

My facial skin still has a "slapped" appearance and is oozing yellow fluid which dries to a crust. The skin has a very rough texture. It has now been like this for several weeks and I cannot work out why.

I am sure that my moisturiser is causing a reaction, so have switched to fucidin cream hoping that it may help improve matters.

I don't feel human. I feel very ugly and self conscious when I go out and I am
very embarrassed about my red flaky face.

Day 349 “No-Mo” Is Not Helping

Re: my last post about the moisturisers.....

Shortly after writing that post, I found the tight skin so unbearable that I blobbed on some cream!

I felt 100% better.

In conclusion, the no-moisture method is NOT for me. We need emollients to get through this with our sanity intact.

Day 347 (photo): Stop Using Moisturiser?

OK, Lets start today's post off with a photo and then discuss.

This, as you may have guessed, is a picture of my skin in all it's post-flare glory today. The burning sensation is completely gone and the top layer of skin has lifted off and is peeling all in one go Some areas are bleeding.It looks worse than it feels. I felt a lot worse when it was in the juicy red phase. This, by contrast is a walk in the park, despite looking terrible. Suffice to say, I am NOT leaving the house looking like this.

Yesterday I spoke briefly about a theory I had concerning moisturisers. Now please bear in mind that I have no medical knowledge and I am just bouncing ideas around out loud on the blog.

In trying to work out what brought the latest flare on, I guessed that I may have suddenly developed a reaction to a product I was previously comfortable with. But what product? I use cleansers and a variety of creams from Vaseline to hemp cream and any single one could be the culprit. Either that, or my washing powder, shampoo or something I have eaten. What about mould spores in the Autumn air? It could be anything!

I figured that I would stop using products on my face to see if my skin would right itself. This was based on two ideas. Firstly, try googling "caveman skin regimen". Acne sufferers use this method of no products on their face, to clear acne. The side effect is, or course that they develop what is called the "dry skin mask", due to not washing. There is nothing on the Internet about eczema sufferers having success with the caveman regime. I had a theory that once the dry skin mask had sloughed off, that my skin would be nice underneath, but it doesn't seem to work that way. I am just bleeding and cracking from lack of moisture.

The second reason was that I read about a doctor in Japan, Dr Sato, who works with TSW patients and has a strict "no moisturiser" policy. He believes that the skin gets addicted to moisturiser the same way as it gets addicted to steroids. His patients actually improved and developed more resilient skin upon stopping moisturiser. The skin started to produce its own oils in response to the lack of external moisture.

So here I am with a flaky face.

I have two options. I can carry on as I am, which will either lead to more cracking and bleeding, or possibly the skin righting itself after the "big slough."

Or...

I can dab on a thin layer of moisturiser which may or may not bring on another flare-up.

Incidentally, the skin underneath the dry layer looks pink and immature, as if it is not quite ready to appear yet.

I may give it a bit longer. If the skin gets noticeably worse, I will have to apply a little cream.

Now...changing the subject completely.....

Good news for TSW sufferers! Dr Fukaya, one of the foremost experts in treating topical steroid withdrawal and author of several papers on the subject, is trialing a new ointment that may help TSW sufferers. The ointment is called  Clofibrate ointment. He has posted a video on youtube about it.

Of course, the ointment is just in the trial phase at present. Even if it works, it will probably be licenced too late to help the current generation of TSW patients, but hopefully will make things easier for the next generation. Research on the topic of TSW and speeding up healing times is greatly needed. I read a quote from another dermatologist who feels that the TSW healing process takes on average, 3 to 4 years in total. Great. I could have another 3 years of this then. Looks like this blog will be going for some time to come.

Day 346 No Moisturiser

This is going to be a short post, because I am typing it on the ipad.

My skin is calming down a bit today. It does not burn but looks a bit pink. The skin is very tight.

I have decided to stop all products on my face to give it a chance to right itself. I have a theory that moisturisers on the skin stop the skin from making its own moisture and that cleansers strip the natural oil from the skin. I need to let my skin breathe for a few days and see how it goes. It is called the "caveman" approach and a similar approach has reportedly been very successful in acne sufferers.

Anyway, more on this in my next few posts. I have the kids off school this week so will post when I get the chance.

Day 345 (another bad flare photo!)

My skin is looking really awful today, as it is in transition from the hot juicy phase to the flaky phase. I know this is a good sign, but it looks really bad and I have holed myself indoors, unable to face the world (that is, until it is time to fetch the kids!).

Here is today's photo, which I consider to be the worst flare photo yet:

The top layer of skin is starting to shed off, similar to wheat happens when we get sunburn. Hopefully, in a few days, the skin will be back to normal again.

I want to make an important point based on something that Leslie, a longstanding Itsan forum member who has been off the steroid creams for 2 years, made. She said that it could be possible that the skin can develop a sudden reaction to creams that it could previously tolerate. This makes sense to me. Since withdrawals started, I have been using hemp cream and having great results. However, I wonder whether this flare could be due to my developing sensitivity to the hemp cream. I also used Vaseline, which seems to have made the weeping worse. For now, I have decided not to use anything at all on  my skin, for fear of bringing on a flare.

Another factor which may have contributed to this sudden flare, is the fact that I stopped drinking my dandelion tea. I reported a while ago that studies have proven dandelion to be a Nitric Oxide antagonist, in other words, dandelion can reduce the effects of NO in the body. I used to drink about 4 cups a day, but swapped supermarkets and my current supermarket doesn't sell it. My mom brought me a box over today. Thanks mom! I would rather be addicted to dandelion tea than steroid creams!

In discussing this subject in the Itsan forum, many members reported something similar: a nasty flare at the 11 month mark. I am glad that so many of us are reporting and blogging our experiences, because we may find that patterns emerge and this information may help others going through steroid withdrawals to know what to expect.

At least my skin has finally stopped burning, and for now, my urge to pop to the chemist for a giant tub of steroids has subsided!

Day 343 (more bad flare photos)

My skin is burning. It feels like someone has set me on fire.

I woke up this morning and most of my face was covered in a fine yellow crust. I do not think the skin is infected, but it could very easily go that way in its current state.

This is the most tempted I have ever been to go back to steroid creams. I can't function like this. I have to go to parents evening tonight for 2.5 hours looking like a tomato and I have to meet all of my sons teachers. I will be so embarrassed. My husband is at work all weekend, leaving me to look after the kids, and they are off school next week, which will be awful if my skin is like this, as I won't want to leave the house.

The crusty skin was not only unsightly, but also exuding a smell of rotting flesh. I knew I would have to clean up the area, but was worried what to use on my inflamed skin. I put a little baby shampoo in some warm water with some Epsom salts and dabbed the crust off gently with a cotton wool pad. My skin now looks like this:

As you can see, my neck is a normal colour, but my face is beet-red. It seems to have stopped oozing, but the skin is tight and very dry. My face is also puffy, and seems to be retaining fluid. My eyes are baggy and I look like an old person.

I have more energy today than I did yesterday, but I am still very depressed. My fellow Itsan forum members have tried to encourage me by saying my skin is having a final blow-out before healing. I hope it is true. Every day it gets worse rather than better and I don't know whether to use creams or just leave it alone.

This is clearly NOT eczema. This is Red Skin Syndrome caused by nitric oxide dilating my steroid-starved blood vessels.

Red is my least favourite colour right now.

Day 342: (bad flare photo)

Sorry to report that my skin is even worse today. I had a rough night and couldn't sleep well due to the ooze coming out of my face.

Here is today's photo:

The flaky looking skin isn't dry skin, it is actually dried up ooze. Half of my face is oozing and the other half is also starting to redden. The skin is red, burning and sore.

I can't even begin to describe what this setback is doing to me emotionally. I can usually get on with my daily routine, but I got my husband to take the kids to school this morning because I was worried about the cold wind stinging my skin. I don't want to go out. I just want to stay at home and not face anyone.

I went out last night and a well meaning friend commented on the state of my skin and how bad it looked. Of course, she did the usual thing and recommended a cream that would "cure me". I didn't even have the energy to say no, even though my brain was screaming "No!!!! This isn't eczema! This is steroid withdrawal! No cream is going to cure it! It just needs time!!!!", but instead I sheepishly thanked her for her offer of yet another tube of useless cream to add to my pile of other tubes of useless cream. People mean well, but stuff like that really upsets me.

I hate it when people comment on my skin (unless it is a compliment!). Comments like "oooh, your skin looks bad today", don't really do anything to boost my self esteem, especially if I didn't think I looked particularly bad.

The knock on effect from this incident is that now I am feeling really low and want to shut myself away until my skin looks better. It's not going to happen, as I have to fetch the kids later and go to my son's parents evening tomorrow and face his teachers! I have no place to hide!

I re-read Dr Rapaports article about his case studies of people with steroid addiction. Anyone going through this should read this article. He states that most cases of TSW last between 2 months and 2.5 years. I presume the 2 month cases are people who only used steroids for a week. I don't know of anyone cured in 2 months. I am at the point where I am thinking the 2.5 years may be a closer estimate as to what i should expect, in which case I have to put up with another 1.5 years of this hell.

Oh joy.

Day 341: (photos)

It is really hard for me to post this photo.

I have had so many lovely comments from people who have been encouraged by my progress, and to show this photo feels like I am letting everyone down.

BUT....I have to be honest about the reality of TSW and the reality is that it has ups and downs. I thought I was almost healed, but I have hit a setback.

I woke up this morning and the left half of my face felt wet. The skin was rough again, like sandpaper, and the skin was oozing fluid, a bit like in the early days of withdrawals. Don't get me wrong, it hasn't been disabling, and I have still been out and about as normal, but it seems so  discouraging at almost 12 months in.

Anyway, here is the photo:

As you can see, the skin is not overly red, and it is not until you get really close that you notice it, but it feels uncomfortable, sore and itchy.

This is what the my face looked like a few weeks ago, so you can see why I am sad:

It seems that my facial skin is on a weekly flare cycle. For some reason, it flares on a Tuesday, and by the weekend it looks normal, before flaring again the following Tuesday.

The rest of my body is doing really well...

My hand is NORMAL!!! It used to have a big red "tidemark" on it, but the skin is lovely now.

My inner arm was a huge problem area for me, but is now almost normal colour too. I am not afraid to wear short sleeved tops now.

My neck is also much improved. Only a little bit of pink visible. I remember when it was so bad, I couldn't move it and this area was all shiny and red, like plastic.
...so I shouldn't really moan, but its my blog and I'll cry if I want to! I have tried to figure out why I am flaring, but there are too many variables. The TSW rash seems to be focusing all its efforts on my face and leaving the rest of me alone, so I think it is losing power.

TSW is a very long journey and yes, I have days when I wonder if my skin will ever actually heal fully, but I am still glad I got off the steroids, as I believe they were doing me no good at all. Others have healed, so I really hope it will happen for me soon and that this face thing is a "blip". I hope nobody is discouraged by this post.

Day 340 Healing The Red

Day 340 aaarrgggh! The 12 month mark is in my grasp!

The red skin blogger's army is increasing and I am pleased to announce another great new blog, healingthered. Mariella has just stopped using steroid creams and is a thought provoking read, using quotes from literature to offer a gleam of encouragement to fellow red-skinners.

The blogs down the right hand side of this page are great because they show the experiences of many individuals all at different stages of healing. Some are written by parents, some by spouses and some by people going through TSW, but every blog has an individual slant to the story. When I started blogging, there were only about 3 blogs on the subject, so we are creating a great legacy for people searching for answers to their mysterious red skin.

People are waking up and unplugging themselves from the steroid matrix!

Day 338 Eczemancipated Blog

My face flare has gone into the dry flaky phase, so it looks awful, but I know it is almost over. I went to the theatre last night-no makeup on, but it didn't matter because it was nice and dark in there!

Following the current boom of TSW related blogs, I am pleased to announce a new blogger on the block. Heather is an Esthetician,  so her views on dealing with TSW will be enlightening and interesting. She is currently 153 days into steroid withdrawal. I love the way she deals with it in a humorous way, her blogpost today really made me smile, even though the subject matter hit very close to home!

Anyway, her blog is definitely one to watch, and full of useful practical info to help deal with TSW. She has some good tips on there and she advises avoidance on harsh detergents when cleaning, which is something I absolutely agree with. I think detergents are responsible for many cases of eczema in children and adults, and have a stock of white vinegar and baking soda in my cupboard now!

Check out the cleverly-titled eczemancipated blog today.

Day 336: photo

A funny thing happened to my face......

Ecstatic at the progress that my skin had made, I decided to put some makeup on when I went out a couple of nights ago. Since I started TSW, I usually wear no makeup at all, and only recently started experimenting again with a little mascara and lipstick on the odd occasion. Anyway, this was different. This was the works: face powder, eyeshadow, lipstick and mascara. I also smeared serum through my hair to make it look glossy. I figured my skin would cope.

I figured wrong.

By the time I got home, I noticed a wet patch on my cheek. The skin on my cheek was starting to form small, water-filled blisters in response to the "irritation". The skin was incredibly itchy and rough. This was the first time it has wept fluid in many months. The next day, the blisters dried out and the skin is now like this:

Now OK, to get it into perspective, I know it is not nearly as bad as it was at the beginning of withdrawals, but seeing as my skin was almost normal, this has been a big setback for me. Also, the skin feels worse than it looks, so it actually feels like it is burning and is very itchy.

I know it will be better in a few days. It will follow the usual pattern of going all dry and flaky before revealing nice new skin, but it has me concerned about any future use of cosmetics. I wonder whether I will ever be able to put a "face on" again.

So, I'm not too fussed during day to day stuff like taking the kids to school and visiting friends, but I do like to make a bit of effort if I am going out for the evening. It is nice to look human once in a while! The ironic thing was that when I went out, my friend told me how nice I looked. The aftermath is not too pretty though!

TSW makes the skin incredibly sensitive. In one of Dr Rapaports papers, he writes about a lady who went through TSW and at the end of about 2 years, she could wear makeup again with no problems. So maybe I will stick the makeup bag in the drawer for now and try again in a few months. Hey, maybe my skin will be so good that I won't need any cosmetics. I will stick a paper bag over my head in the meantime!

Day 333 Shedding Phase

Since my post last week, my face went through a mild flare and then a very dry shedding stage, which brought it full circle and pretty much back to normal again. The shedding phase is like a big "reveal" with lovely new skin underneath. I'm a bit like a caterpillar coming out of the cocoon!

My arms now look completely normal, with the only sign of tsw a pinkish rash on my inner arm which is barely noticeable.

My legs are also doing great and my torso is rash-free.

I read a comment on the itsan forum where someone had estimated that for every year of steroid use, it takes a month to heal. I hope it is true, because I used steroid creams for 15 years, so it should take 15 months to heal based on that theory, and I am nearly 11 months into withdrawals! Obviously healing times vary wildly between individuals based on the length of time and potency of steroids used. I wish there was a magic formula to work out healing times, but honestly don't believe there is. Dr Fukaya estimates that it takes roughly 30% of the time that the person was on steroids eek! That would be almost five years for me! I don't fancy waiting that long for good skin!

My estimate is that I will be fully healed by spring 2013.

Day 326 Sensitive Face

Boo. My face is flaring.

Flares this far into withdrawals are always hard to deal with, not because of their severity (this one is mild), but because I was getting used to having good skin.

The rest of my body is almost rash-free, but my face won't give up without a fight.

I know that when I flare these days, the flares are very short lived, so I just have to sit it out.

The skin on my face feels very sensitive, as if anything I put on it will bring me out in hives. I think it is made worse by sweating, so snuggling under the duvet with the heating on at night is not doing me any good!

I have temporarily gone back to using a daily antihistamine tablet.

I hope this post does not dishearten anyone, but I have always been totally honest about my skin's progress. Flares and cycles are all part of TSW and it seems I may have longer to go than I expected.