Day 71 Wet Compresses

Flare 4 is here and I am having a big problem with oozing skin.

Basically, there are two types of oozing with topical corticosteroid withdrawal. The first type is clear coloured and more like sticky sweat. It accumulates in skin folds when you are sitting or lying down and when exposed to air it dries very quickly, leaving flaky skin behind.

The other type of ooze is nasty. It is yellow in colour and dries hard on the skin. it appears in areas where the skin is very badly damaged. This is the type of ooze that I currently have on my legs and the danger is that it can easily get infected. I am trying to dry it up by dabbing affected areas with calamine lotion, although the ooze still seems to be coming through a bit.

Dr Rapaport suggests treating oozing areas with Domeboro solution, but this is not available where I live in the UK.

Wet compresses are also a useful treatment for wet, oozing and weepy eczema skin.

The flare isn't as intense as flare number 3, but the oozing is pretty bad and I feel like a tree oozing sap. I have some areas of good skin, but my neck has flared badly again and my legs are bad all over.

I can't do much other than keep dabbing the bad areas with calamine and sitting it out until it is over.

Day 68 Flare After Cooking

After a good day yesterday, I experienced a "mini flare" on the evening. I sometimes get this, when I have been busy cooking and I wonder if it is brought on by the heat of the kitchen. By 6:00 p.m. my skin was quite red and I was desperate to get into the bath as soon as possible.

My skin was a bit wet during the night, particularly in the elbow creases, backs of my legs and my chest area, I put a silk scarf around my neck and tucked it into my bra to absorb the ooze.This morning I woke up feeling a little bit sore and stinging. My skin still looks OK, but I am a bit worried that I may be slowly heading towards my next flare over the weekend.

It is really good to see the amount of new people joining the Google support group and taking steps to break free of steroid addiction. We have had many uplifting stories recently, of people who are close to being completely healed after many months of withdrawal. These stories give me a lot of hope.

It is sad the people with Red Skin Syndrome face a lot of ignorance from doctors. People assume that you have eczema because you stopped steroids. This is not true. The rash is not eczema! It is the blood vessels dilating in response to the steroid withdrawal. When I had eczema as a child, it was nothing like this.

Day 67 (photos)

I am still feeling well and I think that my skin continues to improve. It certainly feels more supple and flexible and has lost a lot of the stiffness and dryness that made life uncomfortable. It feels like healing is talking place within the deep skin layers.

I am flaking less, but some areas are stiill a bit flaky, and it seems like the skin is renewing itself every day.

I am posting some more photos today, as I feel like there is abig difference between my skin today and yesterday, although I am not sure how apparent it will be in the photos as it is hard to get the same level of lighting to show the colour of the skin.

If you compare this photo of my arm with the one I took a few days ago, the skin looks a lot smoother and it has lost the dry, wrinkly appearance. It is still a little bit pink, and the skin is not normal yet, but it is heading in the right direction. I am hoping that when we get some sunshine in a few months time, I can bare my arms and it will help them to heal as DR Rapaport is a big advocate of sunlight as a healer.

I am so glad I can now actually see white skin on my neck! This is SO much better than the first photo I took of my neck at the start of withdrawal, when the whole area was bright red and shiny. Now there is just a small pink blotchy area. I am very hopeful that this will improve over the next few months, and I am really glad it has stopped oozing.

My leg looks completely different to yesterday's photo. It still looks sore, but it does feel better and I do think it is healing. I can walk a bit better and movement is improved.

I know I'm still blotchy and pink, and I won't be entering Miss World any time soon, but I am so happy with my progress and I know I am on the road to better skin without the steroid creams!

Day 66 (photos)

Yesterday was a good day, and I was able to go out on the evening, so I'm feeling human again.

I askes on the forum about the pitted areas that I mentioned yesterday. It is apparently quite common to get these pitted areas during steroid withdrawal and the phenomenon is called vesiculation. Unfortunately, my camera doesn't have a good close up feature, so I can't take photos, but if you follow yesterday's link to Juliana's blog there is a good example photo on day 137.

I thought I would post some progress photos.

I am really pleased with the improvement in my neck. Last week, it was like a piece of bacon, red, raw and wet! Since the end of the flare, the skin has flaked off and feels baby smooth. Although the area is pink, the colour is a lot paler than it has been in a while and it is definitely getting better. I can move my neck and there is no weeping or oozing. For the first time in a while I was able to sleep without something round my neck to mop up the ooze. I am so happy, and I really hope that the next flare, whenever it comes, does not undo all the progress in this area! I still can't tolerate high necked clothing though and I like to have the skin exposed to the air as much as possible to minimise sweating.

As you can see, the back of my leg is terrible and walking is still a big problem for me, as it stings so much! If I remain in a sitting position for too long, the area gets wet and oozy. I have to keep my legs stretched out as much as possible. The area is also very itchy, so healing is slowed down by my fingernails scratching the area! I am thinking of bandaging this area with some tubular bandage to promote healing and keep it safe from scratching. this is by far the worst area at the moment, so the symptoms of withdrawal seem to be moving down my body. Interestingly, this is not really an area where I ever applied much steroid cream, and my face, where I applied lots of steroid creams, seems to be recovering OK.

Things are generally going in the right direction, and with no sign of flare number 4 just yet, so I will make the most of things and take it easy.

Day 65 Adrenal Fatigue

My skin is still in a good condition post-flare and even the backs of my legs seem a bit better today.

I noticed a new symptom that Juliana also mentioned on her blog. I get weepy areas of skin that crust over, but when the crusts come off, there are small pits, or wells underneath that look like open sores. I first had a patch like this on my nose a couple of days ago, and it was like there were small holes in the skin on my nose with water coming out if I applied any cream,

I don't really have an explanation for what this pitting is or what causes it, other than that it is another side effect of steroid withdrawal.

On a totally different subject, another symptom of steroid withdrawal is adrenal fatigue. The adrenals are the glands that make, amongst other things, cortisol, the production of which is supressed by the steroid creams, which trick the body into thinking it has enough cortisol. Naturally, during steroid cream withdrawal, the adrenals have to get used to functioning normally again, which can mean side effects such as depression, odd sleep patterns and mood swings.

That explains a lot.....!

Day 64 Silk Scarf

I'm so glad that flare 3 is over and hopefully I will now have a few good days before the next one. I was pleased to wake up this morning with even more improvement to the skin on my neck and chest, which now has lovely soft skin. The skin colour is still pink and blotchy, but not burning red.

My only problem ares today are the backs of my legs, which are still really sore and when I scratch them or rub them, they start to ooze clear, sticky fluid. This obviously limits my ability to walk.

The silk scarves and pillowcase have really helped me over the past few days. It helps to have silk round my neck when it is flaring, as it seems to be less drying than cotton and leaves my skin in better condition. I shall be investing in some more silk scarves in preparation for the next flare.

Day 63 (photos)

Today has me hitting the 9 week mark and the reason I haven't posted recently is because last week was the week from hell with the worst flare yet. I could not even sit at the computer to type the blog because bending my legs in a sitting position caused them to ooze.

My skin has been buring since Monday, with severe oozing from my legs, elbow creases, neck, chest and behind my ears, which has caused my hair to become matted up with a yellow crust.

I have spent most of the week lying on the settee with a silk pillowcase or scarf wrapped around my neck to mop up the constant leaking, which also caused my neck to be so tight that I couldn't turn it at all. I was very depressed and in tears constantly, which makes me worried about the effect this is having on my family and kids. After all, I am usually a very "hands on" mom, who plays with the kids a lot and takes them out places, and now I am just a crying invalid on the setee. My little boy keeps asking me when I am going to get better.

However, last night, something changed. I Had a good sleep and woke up with fine white powdery flaky skin all over my face and neck. It looked bad, but the oozing and redness was gone and the skin underneath the flaking skin was soft and new. The oozing is now limited to behind my legs and behind my ears.

Anyway, I thought I would post some more "progress" photos, although they look pretty bad....

My neck has gone pretty flaky and dry, but it is a lot less red and raw than it has been in the past couple of days and the skin underneath the flakes is pretty good.

The back of my legs are really flaky and sore and walking is made more difficult by the fact that my knees are slightly swollen. If you compare it to the photo I took a couple of days ago, you can see that it has improved slightly, as the skin is dry and flaky rather than wet and juicy.

My arm looks like old lady's skin. it is very dry and atrophied. Still, I view the dry flaky skin as preferable to the wet oozy skin, so I am not complaining.

It looks like flare number 3, despite being intense, was only limited to 7 days, which is my shortest flare yet.