Monday, 5 October 2015

Big Improvements at Last!

Just a quick update to show everyone my improvement photos, as my last post was a bit depressing. Since then, things have been on the up and I've seen a lot of improvements in my skin.

I'm not sure what to attribute the improvements to, as flares can come and go and sometimes we can make links and connections that aren't really causes. However, I will mention  a few things that MIGHT be the cause of my improvement:

Time (ha ha! I'm almost 46 months in now!)
Quercetin. I've been taking 2 tablets daily. Its a natural antihistamine.
Vitamin D. I'm back to megadosing on the D now that the weather is darker.
Sun. Its been surprisingly sunny here in the UK for the time of year.
Lower dose of steroid inhaler and using a spacer to prevent the steroid touching my skin. I also rinse my mouth afterward.

So here are my photos. I tried to get them as close to last months positions as I could to allow easy comparison:

I'm still not perfect, but I'm really happy with how much better my skin looks and feels compared to when I last blogged.

Hope everyone sees improvements in their skin soon. Keep soldiering on, folks!

Thursday, 10 September 2015

Photo Update at 45 Months

Nothing too exciting to report, I'm afraid. My skin seems to have settled into on/off flaring cycles in an almost weekly basis, so I never know quite how my skin will be on any given day.

Today was lucky. After a few mornings of waking up with a wet neck, I was blessedly dry this morning.

My worst areas are my hands, which are always incredibly dry and itchy. I'm currently doing moisturiser withdrawal on them as dry and ashy is feeling better than red and swollen right now.
My neck is also a super bad area, with lots of oozing. Thank goodness for silk scarves and hair bobbles. Made the mistake of wearing my hair down to the shops and it was all stuck to my neck when I got home.

My face isn't too bad. Just ashy round the mouth area. I've also scratched a big graze into my jawline.

Here are my pics.

 Old lady's hand!
 Ashy chin.
Creased neck.

Despite this, I'm able to get out and about and live my life. I've been on a few big days out recently, including theme parks. It's hard, but that's TSW for you.

Cant believe I will be 4 years off steroid creams in November. I'm still on low-dose steroids for my asthma, so sometimes question whether I am actually in true TSW, or just bubbling under. My asthma is really bad right now, so I've no negotiating room with my doctor to get off the steroid at the moment. In the summer, when my asthma improves, I will ask the asthma nurse about the possibility of the non-steroidal preventers.

I'm currently using quercetin and vitamin C as well as vitamin D in the hope of helping symptoms, although I've yet to see any benefit from either.

Monday, 31 August 2015

Daily Mail Article About Steroid Addiction

Today's Daily Mail features the story of a lady who was hospitalised after suffering a bad reaction from steroid creams. The article mentions Itsan too.

Let's get the word out there. Please leave comments on the article and encourage people to visit the Itsan site.

New Support Website for TSW Patients in the UK

I am pleased to announce the formation of a new support network in the UK for patients of TSW.

BEACON: the British Eczema Care Outreach Network, aims to represent patients affected by overuse of topical steroid medication by attending patients panels and liasing with the medical profession to increase awareness.

The site is in its early stages, but they do have a survey that they'd like UK patients to fill in to get an idea of the prevalence of TSW here in Britain. If you or a relative are suffering from Red Skin Syndrome, please fill it in via the link below.

Monday, 24 August 2015

Vicks Vaporub for Eczema and Topical Steroid Withdrawal

My hands have been off-the-scale bad the last few weeks. They just peel constantly, with no nice layer of skin underneath; just more peeling flesh. In my desperation I've taken to slathering my hands in thick ointment and applying tubular bandage on the top to try and seal in the moisture and get some relief.

I'd been using the Robertsons eczema cream, which was helping a lot, but I'm now running low and really can't afford any more due to the high cost of postage and the customs charges (hopefully it will be available in UK soon), so I'm back to using Vaseline right now as it seems to be the thing that irritates me least. I would love to be able to do moisturiser withdrawal on my hands, but when I try I get deep bleeding fissures, so I really am dependent on the gooey stuff for now.

Anyway, during my research I found a forum thread about a man who used Vicks Vaporub on his eczema and it cleared it up. I also found a few references on the Itsan forum of users who swear by the stuff. There is no way I would have ever considered using Vicks on my eczema, as I just presumed that it would sting like crazy.

It's cheap enough to buy though, so I thought a little experimentation wouldn't harm and got myself a nice big tub of Vicks for about £4 from the supermarket. It's slightly runnier in texture than Vaseline so seems to be easier to apply. After a few seconds, WHAM! I felt an icy cold tingle in my hands. It didn't sting at all. It was lovely. It felt so refreshing and cool. My itch vanished. It tingled cool on my hands for several minutes. I felt like I had Elsa's ice powers.

I've had no adverse reaction or allergy to the Vicks and I really like the way it feels on my skin, especially how it kills the itch dead. For now, it's another useful tool in my TSW armoury and I'm thankful that it was mentioned on he Itsan forum. Hopefully it will give my hands a break, as I'm getting really fed up of not being able to use them properly. I've not had hands like this in the whole of my TSW journey so far, so I don't know what's going on.

Anyone else tried Vicks and found it helpful?

Friday, 14 August 2015

Topical Steroid Addiction in the News Again

Isaiah's story made the news here in the UK. Thanks for sharing his story and raising awareness of the dangers of steroid creams. He's doing well now and his whole family is such an inspiration to me.

Read his story here.

Free Attractions Tickets for Eczema Families

To celebrate their 40th anniversary, the National Eczema society are offering free tickets to Kew Gardens and Edinburgh zoo. Be quick though, they come on a first come, first served basis. To find out more visit their website in the link below.