Saturday, 1 August 2015

New Scholarly Article About Topical Steroid Addiction

As this phenomenon becomes more widely known, more new articles are being published all of the time, adding to the growing body of evidence about the dangers of topical steroid overuse.

This article is published by the Japanese Journal of Dermatology and discusses the rebounding triad of severe itching, dryness and burning following the discontinuation of topical steroids on the face.

You can read the abstract here.

Tuesday, 28 July 2015

ITSAN Menioned on Irish Radio

I just heard about this radio talk show called Liveline on the subject of eczema.

About 20 minutes in, a lady mentions ITSAN and how her daughter healed after stopping steroids.

Listen here.

Monday, 27 July 2015

More Pictures of Healed and Healing People

Thanks my boy Isaiah for keepin' it real and showing us all that we CAN heal from TSW!!!

Isaiah and superheroes 1: Scratchy Monster 0.

Click to see topical steroid recovery photos.

Tuesday, 21 July 2015

The Great Robertson's Skin Repair Ointment Experiment: Day 1

So now for something a little different...

Those reading the blog will know that I'm now 44 months off the steroids and in a bit of a rut with my skin. I have some really stubborn areas, as well as some areas that seemed to have reverted to eczema skin after being previously healed. Readers will also know that I've tried a LOT of things over the last 44 months to bring relief, with various results. Sadly, some of the things that used to work well for me now really irritate my skin, so its time to try something new.

I'd never heard of Robertson's Eczema Cream until recently, when I read an article in the Daily Mail about a little girl who used it and it cleared up her eczema. I then saw more promising photos on the official facebook page, with some miraculous-looking before and after shots.

The man who owns the company is no stranger to the horrors of eczema. When he tried Robertsons, he was so impressed with the results that he literally bought the company.

Now we know it works on eczema, but how about TSW rashes? Well I'm about to put it to the test.

Robertson's have kindly sent me two tubs of the ointment to try out for review purposes. Before I go any further, I should point out that at the moment, the product is only available in Australia. It cost me £12 postage to get the items sent here and a further £13 customs fees. Customers should factor in these costs when purchasing the creams. The good news is that Robertson's plan to stock the product in the UK next year, so hopefully this will put an end to those mean UK customs charges! now for the "science bit"...

I'm taking some "before" pictures of my stubborn areas to see how they react to the ointment. I will use the ointment as directed, 3 times daily for the next 3 weeks. I will use no other products during this time.

My meaty hand

 My flaky wrist
My pink chin
These are my test areas. Lets see if the cream can help.
So let's open the tub....

The stuff inside looks quite solid and it wouldn't spill out if you turned the tub over.

It is quite thick and waxy in texture and smells like lavender.
It rubs in really nicely and leaves a bit of a sheen on the skin. The skin feels a little bit tacky and greasy where I have put the ointment, but not unpleasant.
OK, that's all for now. I will apply the ointment and will be back soon with an update!

Tuesday, 14 July 2015

Facing Up to a Hard Truth About Topical Steroid Withdrawal

OK. this is going to be a hard blog post for me to write. But I'm going to write it anyway. It follows on from my last blogpost and photo update about how I was still flaring badly at 44 months.

The good news is that the flare is past and I'm feeling a lot better today, but I am still a long way from being healed or having normal skin. I know the last blogpost upset and discouraged people and that one dear blogger friend was actually in tears reading it. Sorry again.

We were having a discussion on the Itsan forum about this subject and the following comment came up which really made me think long and hard about the direction in which my TSW journey is going:

"Louise - I have today read your blog update and am so sorry to read that you are not doing well. Your plight is not what any of us wants to read and the lack of progress from you and several other long term sufferers is very discouraging. We desperately need some of the over 3 year sufferers to heal - have we had anyone heal after 40 months or so ? If not, over the next 12 months a picture is going to emerge of a cut off point after which recovery is not possible because of the long term damage..."

This comment really got me thinking, especially at it is from someone whom I greatly admire and who has been supporting a wife who has not had a break in her TSW symptoms in over 3 years.

I know a lot of people who have healed. Little Keira, Jake, Tracy, Karen and others. But their healing seemed to have something in common: they healed completely in less than 2 years. Many reports are coming in about ones who have healed from TSW and again, the healing process for all of them seems to be around the 18 month to 2 year mark. Beyond this point we seem to have long-term sufferers who are still struggling with symptoms, myself included.

When I started this journey, all we really had to go on was a TSW doctor that said that all his patients were healed and a book by a Japanese TSW doctor with pictures of the healing process (all, interestingly below the 2 year mark also). At that time, we concluded from these available lines of evidence that we would ALL heal if we stopped the steroid creams. Since then, there have been many more reports and articles about steroid addiction and withdrawal. The first one that set the alarm bells ringing was a report from India that mentioned "permanent damage" from abuse of steroid cream. This was the first time I'd read about the possibility of the damage being irreversible.

So have I done permanent damage to my skin and blood vessels with over 15 year's use of steroid creams, including potent ones on the face? I have to conclude that it is a strong possibility. I also have to conclude that I have my concerns about anyone who is entering the third or more year of steroid withdrawal with no sign of recovery.

Where does this leave me? Well:

1. I am still a fervent supporter of Itsan and the work that they do to raise awareness about steroid addiction.

2. I know that people can heal from steroid addicition, as I've seen first hand the stories of healed ones, as well as photos. I hope that as time goes on, a better picture can emerge about healing patterns.

3. I hope than more studies can be done about TSW outcomes.

4. I hope that drug companies can develop something that can end the misery of TSW once and for all. Things are looking promising on this front, with lots of innovations in the pipeline.

5. I plan to never return to steroid medication. I know now that it is a case of keeping myself comfortable and enjoying the good days when they come.

6. To continue writing the blog so that people can see the dangers of steroid overuse and yes, the damage could be permanent, so don't start down the road to addiction!

The blog was only ever an observation diary. Of course, I hoped it would have ended better, but for now it seems as though my steroid damage may be permanent and I'm going to have to get my head round that fact. I will keep everyone updated still, in the hope of creating a realistic picture of how TSW develops.

And of course, if I DO heal, I will be letting everyone know!

Friday, 10 July 2015

Skin Update at 44 Months: Feeling Despondent (photos)

Hi people. I like to blog my progress regularly so that people can see how the TSW process affects the skin. I'm now 44 months into TSW and sadly, have to report than instead of my usual summer healing, my skin has been pretty miserable. I was meant to go to a lovely summer family event today, but have had to send my husband, with my apologies, while I stagnate in the house trying to maintain some level of comfort.

What really get to me is that if you look back through this blog to last year's posts, you will see that this time last year my skin was completely clear and normal, so to go backwards like this is heartbreaking. I spent a good chunk of yesterday crying and debating whether to just make a Faustian pact with the steroids and be done with this, even temporarily. And yes, I know that everyone will be telling me to hang in there because I've been off them so long and I don't want to undo my progress, but seriously, I have no quality of life right now.

I no longer believe that its likely that I will completely heal. I think that I have done too much damage. It seems very unlikely that my skin will ever completely return to normal. I read about people 7 and 8 years into withdrawals still suffering. Wow, just wow.

So here are my photos:
So here is the red face. Very red, very inflamed, burning and sore.

                                        Neck is weepy and scabby, with very dry skin.
 Hands are worst areas right now, with baggy, elephant skin. skin too big for my hand that feels like thick plastic.
 Skin at the back of my legs was previously clear but is starting to crack and scab again.
                                              Behind my ears is wet and weeping.

So sorry everyone for being such a let-down. Wish I could be posting healed photos instead of this, but those are the breaks.

I probably won't be posting any pictures in August, because the kids are off school, so I'll try and post in September. I hope it will be something more positive.

Sorry again. I feel like I've let all my blog readers down.

Sunday, 5 July 2015

Shocking Statistic About the Likelihood of Steroid Cream Side Effects

There have been many lively debates about the prevalence of steroid addiction and chance of the skin becoming reliant on steroid creams. We know that not everyone gets addicted to the creams, and a lack of available scientific studies means that estimates can vary wildly. The general consensus in the forums at this present time is that at least 15% of steroid cream users become reliant on the creams and end up developing red skin syndrome.

HOWEVER, I just found an article that was published in the New York Times back in 1997. It quotes a Japanese dermatologist called Dr Masami Uehara. He states:

"Some side effects will occur in 60 percent to 80 percent of patients who use steroids for six months without proper care being taken."

Clearly, then, there is much to discover about the prevalence of topical steroid addiction. If, as this doctor suggests, 60-80% of  long term steroid cream users have side effects, then the amount of TSA cases as a proportion of eczema sufferers may possibly be higher than first estimated.

Either way, this underscores the need to use steroid creams sensibly and only for short periods of time.