Thursday, 30 April 2015

New Research Paper Published on Topical Steroid Withdrawal

The floodgates are opening and new research projects are being commissioned about the long-term effects of topical steroids on the body. This is only the tip of the iceberg now that TSW is becoming more recognised in the medical community. Hopefully many more projects like this will follow, so that doctors can take TSW seriously and plan better outcomes for patients.

You can read the full article here.

This latest study is from Japan and is the first large-scale study focusing on long and short term outcomes for users of topical steroids upon cessation of the medication. The study found that the longer patients had been using topical steroids, the more severe the symptoms of withdrawal.

Thursday, 23 April 2015

Apple Cider Vinegar, Epsom Salts and Jojoba Oil

These are a few of my favourite things...

Now I'm in the later stages of withdrawal, it is just a case of maintenance mode. Now the sunshine is here, it feels like my skin is finally waking up after hibernation and I'm seeing great improvements every day. I will post some photos soon, but this is a rush blog post as I have a full-on day today.

Anyway, as I was saying, my three absolute favourite things right now are ACV, Epsom salts and jojoba oil. They are TSW staples.

For me, there is nothing more soothing than a soak in the bath with about 200g salts and a good slug of ACV. It doesn't sting, but it alleviates the soreness and seems to dry up any oozy and sore bits. There is also anecdotal evidence that it keeps infection at bay and people have been using apple cider vinegar for centuries for skin ailments. I know it sounds weird, but I like drinking the ACV with water too (not the bath water though!).

The jojoba oil is gorgeous and penetrates the skin quickly. It is the closest thing to your own skin oils that you can use. My skin tolerates it well and it's all I need nowadays for moisturising. If your skin is very dry, you could apply it straight after a bath or even put a few drops in the bath.

Hope everyone is OK. I'm off out to enjoy the sunshine.

Wednesday, 15 April 2015

NEA Make Public Announcement About Topical Steroid Addiction

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.”