Wednesday, 15 April 2015

NEA Make Public Announcement About Topical Steroid Addicition

The NEA task force on topical steroid addiction have published their findings this week on the National Eczema Association website. Much appreciation for all of the hard work and research that has gone into publishing the final document. I know that the NEA representatives thoroughly researched the available documentation and also listened closely to representatives from ITSAN when preparing their final report.

I am so happy that this condition has now been recognised by a major health organisation like NEA. This will hopefully open the floodgates for doctors and dermatologists to start taking patients' concerns about TSW seriously. Dr Peter Lio MD, who works closely with NEA has started to take on and treat patients with TSW and it would be wonderful if other doctors would follow his example, as TSW sufferers need and deserve the very best medical care and supervision. Currently, lack of information and education about TSW can be a real block to patients getting the best standard of care, but the publication of this document could be a turning point.

The NEA are honest in their approach and admit that there are many gaps in our knowledge at the current time. It could be that this announcement paves the way for researchers to take up the challenge of answering the big questions about TSW: What percentage of TS users get addicted? Can anything speed up the withdrawal process? Is there any way to avoid getting addicted when using TS long term? How many children are affected? Why does TSW take several years to heal?

I am so grateful to all involved in the publication of this document. Ever since I started writing this blog, the TSW community has always been perceived as "fringe" or "alternative." There is no reason that this should be the case, as TSW is a medical condition and should be treated with the same recognition as any other medical condition.

It's good to be counted. It's good to be heard.


Thursday, 9 April 2015

40 Month Update With Pictures

Sorry about the lack of updates. I've been very busy and to be honest, there has not been a lot to report. I've been in a slow and steady "rolling flare" since the end of December, which has been quite tough to deal with psychologically after healing so well the previous summer.

Anyway, I'm pleased to report that the sun is finally shining here in the UK and I've been out in it as much as possible, I sincerely hope it will give me the boost I need.

Flare-wise, I'm tending to get broken night's sleep (which to me is always indicative of TSW). It takes me ages to drop off and then I wake up about 4 in the morning. I put it down to wonky cortisol levels and for me, insomnia always accompanies or precedes a flare.

I get slight oozing in the night around my neck and ears. It is the very thin ooze, not the thick yellow stuff.

When I wake, my skin usually has a dusty, papery surface which flakes off throughout the day. If I'm flaring, the skin under the papery skin is wet. This is the cycle I want to break. I'm also getting the dreaded eye-goo from my flaring eyeballs!

When at its worst, flares can interrupt my daily activities, but lately I have been able to resume normal life once more and enjoy days in the park, at the cinema, theatre and ice show. I've even got a theme park visit planned, so you can see that my skin is having little impact on me right now.

For those interested in the Vitamin D experiment: I don't honestly think it helped me at all. That's not to say it wouldn't benefit others, but I saw no significant improvement after taking at least 5000 dose daily for several months.

Photo time!

 My neck has given me no end of grief these past few weeks. the skin seems too tight and I hold my head in a weird position. Jojoba oil is my salvation and allows me to lubricate it enough to move.
 My inner arms are slowly on the mend again after a few very bad weeks. The redness is subsiding at last. The elbow crooks remain dry and tight.
 My hands have flared again recently. You can see the demarcation between good and bad skin.
Finally my face, which today seems quite flaky, which is a sign of healing. I think things are improving again after a LONG winter.


I hope everyone else is doing OK. I know people reading this and seeing me still flaring at 40 months will think I'm a nutter, but that's alright. I'm on this path and intend to see it through to the end, however long it may be. Its up to blog readers to use the information to make an informed choice about whether TSW is for them. For what its worth, I feel that personally, I'm way better off the steroids and glad to be steroid free. I never intend to use them again, unless it was a life-threatening emergency.

Monday, 6 April 2015

Steroid Cream Overuse Could Lead to Fractures in Babies

A family court recently concluded that overuse of steroid cream could have been the cause of fractured bones in a young baby.

The mother used a mid-strength steroid called Eumovate on the baby three times a day for nine months, which was absorbed and could have affected her bone density, leading to fractures, according to a doctor involved in the case. The use was much higher than advised in the information leaflet that came with the cream.

A link to the article is here.

Tuesday, 24 March 2015

ITSAN Makes The News

Check out this latest story in the Daily Mail where a brave young lady going through TSW shares her experiences and also mentions ITSAN!

Thanks for raising awareness.

Friday, 13 March 2015

Developing New Eczema Treatments for Children

In an exciting new article on the NEA website the National Eczema Association and FDA hope to address the needs of paediatric patients in the treatment of eczema.

The article says:

" there is an unmet need in the treatment of pediatric moderate to severe atopic dermatitis, and it is time to move forward with a sense of urgency."

Hopefully this will result in the development of new and effective therapies which may be more successful in the long-term than topical steroids.

One boy who was interviewed said:

“I have been to 6 different dermatologists, used over 18 different steroid ointments, done light therapy, and taken oral medicines and nothing has worked. That is why it is so important that you allow testing of new drugs for children. We are suffering every day and we are counting on you to help us get some relief.”





Monday, 9 March 2015

Rock Bottom

Saturday was gorgeous and the sun was out all day. I had a great day outside and it really helped my skin.

Sunday, however, was another matter and it rained all day. My skin went downhill very quickly (like the weather) and was just as wet. The whole of the right side of my face was wet to the touch.

I knew a flare was brewing and I was right. I had a restless night, presumably because of wonky cortisol levels, and terrible weeping skin behind my ears and on my face. It felt like I had acid instead of blood, as it burned a path through my blood vessels. My skin dried to a fine, powdery crust this morning.

So I woke up and look freaky and what is worse, I have to see the asthma nurse today for my yearly check-up and I've a feeling she's not going to be happy when she sees my wrecked-up skin. It's hard trying to explain the virtues of the TSW process when you look this bad over three years in.

Moral of the tale: Don't get dependent on the steroid creams to begin with, because getting off them is a LONG process. If you need regular steroids to make your skin look "normal", then chances are you are already hooked and you have my condolences, the recovery process is hell.

Thursday, 5 March 2015

Skin Update at 39 Months (photo)

The sun is finally shining here in the UK!!!!

I'm expecting my skin to make big improvements over the coming weeks.

I try and get out in the sun whenever I see it shining on the garden. It's a bit chilly out there, but it is worth trying to tough it out for 15 minutes of precious UV.

I've been on the vitamin D for several weeks now. It hasn't made a massive difference in my skin, but it does seem to help me sleep, so I'm wondering whether it may be beneficial for TSWers with insomnia. Honestly, I sleep like a log and feel really refreshed in the mornings since I started the vitamin D.

Anyway, here is a quick webcam photo:
 
Still a bit blotchy, but hoping to improve soon!