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.