Monday, 17 November 2014

Anniversary Blogpost: 3 Years Off Steroids-Review of the Year (photos)

Hi everyone. It's that time of year again where I sit back and review the previous year.

I started my steroid cream withdrawal on 21 November 2011, so I am coming up to 3 years off steroid creams. I thought I'd pop on some photos, to give you all an idea of how my skin is right now.

Seeing as it is November and VERY cold, my face is doing surprisingly well. I was expecting a big winter flare but have had nothing so far. You can see that I have nicked the skin on my cheek with my fingernails in my sleep, but I think that is more due to habit than anything else. The skin is looking much more normal in colour than previously and the mild dryness is easily controlled with a thin layer of moisturiser. I'm optimistic that my face will go back to its previously healed state when we get some sunny weather. My face is really the only part still affected by TSW at this stage and the symptoms are VERY mild. I feel I'm close to being healed for good.

 
My hand and arm are normal

This is a side view of my arm and hand to show that the previously rashy area is completely clear.
 
 
 
The rest of my body is the same; just normal skin. My neck is similar to my face, with some small patches of redness. Compared to this time last year, this is fantastic!
 
 
Review of the year:
 
This time last year, November 2013, I was going through a flare period following a good summer of healed skin. The highlight of my month was a lovely get together with local skin friends and TSW bloggers, including the brilliant Miss Kitty. It really cheered me up and set the tone for the year. I met a lovely, inspirational teenager with TSW who helped me feel more positive.
 
In December, I tried the much-touted Moisturiser Withdrawal method. I really hated it and it made me look like a flaky pastry. Still, for the sake of research and experimenting on myself, I carried on the experiment into January, before finally giving it up as a lost cause. Although it was a pretty hyped method at the time, the general consensus seems to be that moisturiser withdrawal is not all that effective for TSW, although some people do prefer this method and say it has helped tremendously. I don't think it suits everyone, but if it does help you, then by all means go for it.
 
In February, my skin was doing OK and I even put the blog on hold while I lived life and enjoyed myself. I didn't blog in March at all, as my skin just got better and better. The Itsan forum hit the 1000 member marker.
 
In April, I briefly returned to the blog to post some great skin photos and to let people know the news about the INSTED initiative where doctors in India were taking TSW seriously.
 
May was another quiet blog month for me, although I was very sad to hear that my teenage friend that I met in November was suffering from steroid-induced cataracts due to her use of creams on her face. She had the operation and is doing OK.
 
In June, I published one of my all-time most popular blogposts as my skin healed completely for the first time since stopping steroids. It was GREAT!!! As a result, July and August were very quiet blogging months as I got outdoors and enjoyed summer.
 
September marked the end of summer, the anniversary of Itsan and the return of the flares! After three months healed, my skin had a crazy flare, but it only lasted a week. Weird.
 
October was a dread month for me, as I always flare in October. But lo and behold-I didn't! My skin stayed clear, which was amazing.
 
Which brings us back round to November and I'm doing well, as you can see from the photos. The winter has taken my skin a small step back, but nothing really to worry about. I truly feel that this is the end of the road now for my TSW.
 
Looking back on the year, I realise how little I have blogged. Some months I didn't blog at all. This is a sign of healing, of moving away to new priorities. I've been homeschooling my autistic son too, so time is at a premium for me now.
 
I want to do a couple of landmark posts about Steroid Phobia and Anniversary Flares. I'd also like to finish up my A-Z of TSW over the coming year, but then I will probably wind down the blog completely. I don't want to be blogging about TSW forever. I slowly want to wean myself back into the real world and away from TSW world.
 
Best wishes to everyone and I hope your year has been as good as mine. I can't get over the amazing ability of the skin to heal if you just leave it alone.
 
 
 
 
 


Saturday, 15 November 2014

The Blog Just Hit 500,000 Pageviews

I just logged on and noticed the pageview marker had passed the half-million.

Many thanks to everyone who has contributed to the total.

Next week marks 3 years off steroids, so I will try and write something special to commemorate it.

I hope that readers have found it a useful resource for information on red skin syndrome and topical steroid withdrawal.

...onwards and upwards toward the golden million pageview marker!

Friday, 7 November 2014

Possible New Therapy for TSW Sufferers?

One of the new members of the ITSAN forum posted this interesting link to a study in China where 170 patients with TSW were given low-level light therapy every other day to ease the severity of symptoms.

The results were remarkable, with a very high percentage of patients seeing dramatic improvements. The article also has photographic evidence to back up the claims.

The light therapy is NOT traditional UV therapy, but involves a different type of light. The Machine used was called the Omnilux Revive and seems to be widely available in many clinics and salons.

My question is, have any of you blog readers tried this therapy, and if so, did it help you?

I'm really interested to know the answers as it could potentially help a lot of people. It was hard to tell from the study how long the results lasted and I wonder if this is a permanent or temporary solution to TSW symptoms. Maybe it would be useful for people like me, who get symptoms in winter but not at other times of the year.

Anyway, you can read the study for yourself by clicking on the link below. Please comment, as I'm interested in what you all think about it.

Effects of low-level light therapy on facial corticosteroid addiction dermatitis: A retrospective analysis of 170 Asian patients


Wednesday, 5 November 2014

ITSAN Forum News

The ITSAN forum just hit 2000 members! How amazing is that? The forum, in its current state has only been around for just over a year, so the growth has been incredible.

Of course, this is just the tip of the iceberg, as many going through TSW are also members of Facebook groups and other social media groups. It's great that people are discussing TSW! Taking it seriously and raising awareness.

Thanks to everyone to takes part in the forum and makes it such a vibrant TSW community. We are here to support one another and I am inspired by some of the well thought out comments I read.

Saturday, 18 October 2014

Please Read: VERY Important Article on Topical Steroid Addiction

Here it is folks! The document we've been waiting for! Get your printers at the ready, because you are going to want to print this one off for your doctors.

Many, many thanks to fellow blogger Tommy, who has always been ahead of the curve with TSW news, as she tells us the latest information from Japan, which is way ahead of the West in recognising and treating TSW. Japan is home to the Sato doctors and Dr Fukaya, who are renowned experts, having treated many thousands of patients with TSW. Tommy has helped bridge the gap by translating and linking to many important Japanese documents and websites about TSW and I consider her blog one of the most important TSW resources available.

Today, she provided a link to a brand new document about TSW which has been written by the Sato doctors and Dr Fukaya. It explains TSW simply and also has photos of healing, as well as guidelines for treatement. As the NEA is mentioned in the document, I am hoping that this is going to be utilised by the NEA task force on Topical Steroid Addiction. This gives me great hope as to the outcome of the task force, as the document provides definitive evidence that TSW is real. I also liked the fact that the document includes pictures of the "red sleeve", one of the defining signs of steroid addicted skin.

The article is fascinating, but also surprising. It challenged many of my perceptions about TSW and may not be without controversy in the TSW community. For example, the doctors suggest systemic (oral) steroids as a treatment for TSW. They also suggest that steroid addicted people may only make up 12% of the eczema community and they base this figure on verifiable studies. It is also interesting that the tone of the document is not anti-steroid in itself, as the doctors state that topical steroids can be a useful treatment for eczema when used properly and short-term in non-addicted patients. Lots of food for discussion and debate then!

In my view, the article has positives and negatives, but mostly positive. It shows that TSA is real and provides photographic evidence, so refutes the argument that the ITSAN people are a bunch of crazies. It also shows that skin can return to NORMAL after stopping steroids. Hurray! On the negative side, I think that naysayers might latch on to the 12% figure and argue that TSA is rare. We will have to wait and see.

I'd love to know what my blog readers think of the article, both the positives and negatives, so please feel free to leave a comment at the bottom.

Thursday, 16 October 2014

West Midlands Hedgehog Rescue

And now...as they say...for something completely different!

Yeah, yeah, I know this blog is all about skin and eczema and TSW, but I want to share my hedgehog story with everyone and this blog (with its almost 500,000 hits) would seem the logical place to do so.

So...my story started yesterday, on a wet, dull Autumn day. I was in the house, homeschooling my little one, when I saw my neighbour dash past the front window and then crouch next to my lawn with her phone, taking photos of something in the grass. On closer inspection, I could see it was a tiny hedgehog.

I went out to take a look and my neighbour said that she ran out because some magpies were attacking the hedgehog. The hedgehog looked really small and sick and was covered in big grey ticks. I went inside to get a box to put it in and popped it inside my shed.

I phoned the local hedgehog rescue, WMHR, and the lady, Joan, was very helpful. She told me to feed the hedgehog and give it something warm to lie on, which was critical in keeping it alive. I used an empty plastic pop bottle, which I filled with hot water and wrapped in a towel. The hedgehog loved the warmth and snuggled up to the hot bottle. I later found a microwaveable wheat bag, which was even better. I also gave her some cat food, which she gobbled up; an encouraging sign.

I spent the rest of the day nursing the sick hog until my husband got home and we drove it to the rescue centre. Joan was lovely and clearly cares very much for these little creatures, sometimes getting up every 2 hours in the night to bottle feed the babies. She said our hedgehog was very sick and underweight and would have died without intervention. At this time of year, they should weigh 600g to get them through the winter, but ours weighed a mere 260g. She said she would keep our hedgehog warm in her house and pull off all the ticks (very brave!) and also give her antibiotics to help her get well.

I was so worried about our little hedgehog, I was actually scared to phone Joan the next day because I thought it may have died in the night and I would have broken my heart over it. Luckily, she'd survived the night thanks to Joan's love and attention and had also had most of her ticks removed. She was eating well, so her prospects looked good.

I'm so grateful to Joan and people like her who sacrifice their time to help little creatures, so I thought I'd give something back by letting people know about WMHR on this blog! Please visit the WMHR website, where you can find links to Joan's Amazon wish list and also their paypal info (friendsofwmhr@btopenworld.com) It would be great if my blog readers could donate a few pounds or dollars to their cause, or maybe buy some much-needed items off the Amazon list.

PLEASE- if my blog has helped you in any way, please donate a few pounds to the hedgehogs and help save my baby hog and others in the same situation. Help the hogs!

*Also, if you want to help WMHR for FREE, you can vote on the ARK website where they are giving away free food to hedgehog charities and you just have to vote for your favourite. So vote for West Midlands Hedgehog Rescue and the site will send them some packs of free food. Cool huh?

Thursday, 9 October 2014

Topical Steroid Withdrawal on Youtube

I was on the ITSAN forum this morning and I read that there are now about 200 videos on Youtube documenting steroid withdrawal. I'm impressed!

Recording a video of your symptoms is incredibly brave. In fact, I've thought about doing it many times, but have just felt too self conscious about the whole process. I find it hard enough to post the photos, so a video would be really hard for me, as I'm very insecure about how I look.

However, there are plenty of brave souls who HAVE posted videos, so I thought I'd link up to a few of them so that you can see the best of what the web has to offer.

I will start off with the brand new ITSAN video, which features short interviews with those affected by TSW. Some are healed, some are caregivers, and some are still going through bad symptoms. Its remarkable how alike we all are:
 
 
 
...also, for anyone who hasn't seen it, I thought I'd post ITSAN's information video too.
 

 
Most of the videos on steroid addiction are user-generated. One of our ITSAN forumites, George, is hoping to make a documentary about topical steroid withdrawal. If you would like to take part, please go onto the itsan forum and check out the "Documentary" thread. In the meantime, here is a video that George posted about his steroid-dependent eczema:
 
There are so many videos on the web, so if you enjoyed watching these, then go onto Youtube and
 search for "Topical steroid addiction" or "Itsan". There are also some great videos of healed people, like Nina Sloane and Rochelle.

Again, many thanks to the people who have gone to the trouble of posting these videos so that the world can see the damage that steroids do to our skin.


....AND FINALLY!!!

a VERY brief video from me to thank everyone for their hard work!

video