Day 223. Trying Bubble Bath

I was brave today, trying 2 things that could have potentially flared my skin up.

Firstly, I took a bath in my dewberry bubble bath! It was lovely, and felt a bit like being a in a spa. After 7 months of bathing in plain old epsom salts, I felt like I was due a bit of a pampering session. Happily, my skin survived and was no worse for wear after the bath.

Then, this afternoon, I took the kids swimming for the first time since I stopped steroids. My skin doesn't look too awful, but thankfully, we had the pool to ourselves, as the rest of the town had gone to watch the olympic torch relay in the high street! The chlorine stung at first, especially where there were open wounds, but after a while, it calmed down. I was hoping that the pool water would have the beneficial effect of keeping the bacteria levels down on my skin too.

After leaving the pool, my skin was slightly drier than usual, so I smoothed on some hemp cream to get it back to normal.

It is nice to be able to do normal things again, especially pampering and fun activities. At the start of this ordeal 7 months ago, I could hardly have imagined myself in this position. I am really happy with my progress.

Day 222 Inhalers and TSW

My skin is talking on a much more normal texture.

In many places I no longer need to use moisturisers at all because the skin is nice and soft and making its own oils.

I'm still a bit flaky though. I laugh becaue when I sit here at the computer, I always leave a little pile of skin on the floor near where I have been sitting and my poor black computer keyboard is covered in fine white dust!

I sweep a lot.

On another positive note, I have managed to wean my steroid inhaler down to one puff a day! Yay! I'm a step nearer being completely steroid free. I would love to get off it completely, but I am being very cautious. My lungs are craving it and if I don't use it, I have real trouble breathing, so I am weaning very very slowly. Realistically I may never be able to come off the inhalers.

*UPDATE on inhaler use 2022. I’m still on the combination steroid inhalers. However this did not stop my skin from healing.

Day 221 Perfumed Toiletries

I think my skin is now at a stage where it can tolerate more.

I am fed up of bathing in Epsom salts and long for some pampering perfumed products!

I bought myself a bottle of dewberry bubble bath, hoping desperately that my skin will tolerate it.

In his last teleconference, Dr Rapaport seemed to indicate that it didn't matter too much what you use in the bath, so long as it does not cause allergy. obviously, early in withdrawals, I was hypersensitive to everything and could only tolerate the epsom salts.

Here's to smelling of berries and perfume instead of rotting flesh......

Day 219 (photos)

Finally! I am able to post some photos on here. I found my USB cable, so all is right with the world!

So here is my face. I have seen massive improvements here and it is the best it has ever been. The skin is no longer constantly dry and tight anymore and it is resuming its normal colour. My chin and sides of my nose are slightly pink, but nowhere near as blotchy as previously. And bear in mind that these areas were hammered with steroid creams daily for over a decade.

Big improvements here also.My neck had been a big problem area. Look back on my previous photos and you will see how bad my neck and chest used to be. It oozed constantly for about 6 months and was dry and flaky the rest of the time. At its worst, I could not turn my neck at all. Now it is SO much better. This area is nearly healed. The remaining redness looks like mild sunburn. I can live with that!

OK, now the not so pretty bits! Remember that over the last few days I said that my arms were the worst affected areas? Well, you can see that I have clawed my right arm to bits in the night. I think it is bad because at the moment I am sleeping on an airbed, which is a bit rubbery and sweaty, so when I lie on my side, my arm gets sweaty. Most of the damage is superficial though. The skin on the rest of my arms is lovely and the tops of my arms are silky soft.

So, in conclusion, I'm pretty happy with my progress. I am now 7 months off the steroids and my skin is getting better every day. my life is pretty normal and I am not letting the TSW get in the way. I am even hoping to go swimming for the first time since I started withdrawals soon.

There have been lots of newbies on the itsan forums starting out on this journey. I hope my photos prove that by staying the course, you will get better.

Day 218 Face Looks Normal

I woke up this morning to good things and bad.

The good thing was that first thing in the morning, the face on my skin now looks NORMAL. I mean completely normal, no redness or anything. The redness does tend to come later in the day though, so I am not entirely out of the woods yet, but the improvements are great.

The bad thing was that I had ripped my arm up in my sleep. It looked like a tiger had clawed all the way down my inner arm. It is now all sore and bleeding. Ouch.

I think things are generally going the right way. The wet wounds on my legs seem to be slowly healing and my skin is generally good. I think maybe my inner arms are the worst at the moment and I think this is due to the location of the veins and arteries in the arms and the vasodilation due to excess Nitric Oxide in my blood.

Getting there S...L....O....W.....L.....Y.........!

It's nice to see lots of newbies on the Itsan forum. More and more people are finding out the truth about uncontrolled use of steroid creams. I am confident that the tide will turn at some point and the doctors, dermatologists and drug companies will be forced to face the truth: that steroid creams are overused and addictive.

On that subject, I was VERY angry to see a website the other day promoting the use of moderate-potency steroid cream use on young children and babies and saying how safe it was. Looking at the bottom of the webpage, I noticed that the page was sponsored my a large pharmaceutical company that makes steroid creams (surprise surprise!). I was so angry! To me, it is like a tobacco company sponsoring a webpage saying that kids can smoke without any side effects. The page even had pictures of babies on it. If they only looked at some of the pictures on the Itsan site, they would see the true damage that long term use of steroid creams can do to young kids.

This is immoral. But I suppose all they care about is money, not kids.

Guest Post: Joey's Story

My name is Joey and I am 57 years old, and have been in topical steroid withdrawals since September 2010. I interrupted my mild withdrawals in March 2011. because of the blotchy, red, slightly itchy skin. I felt horrible and decided to take a much lower dose of Prednisone 20mg. at at the advice of an online doctor who called himself "Dr. Wheatgrass."

 

 

I took the recommended low dose of 20mg. down to 5 mg. for each week of the month of March,  and  each time I got down to 5 mg. my skin would turn bright red and hot. I knew in my heart this doctor's method of healing my eczema was not working, so I stayed up late during several nights and I finally found Kelly Palace's website called "Addicted Skin" and her own story of topical steroid addiction and withdrawals.

 

My own Red Skin Syndrome matched everything she described as hers and I emailed her with my dilemma and she emailed me back the next day. The withdrawals were flaring up and I tried to prepare myself for the days ahead, which I now know would be years. I am in my 21st month including the bout with oral prednisone  and a dab of steroid cream in desperation.....or 15 months if that set me back at all, I am not sure. 

 

According to my older sisters, I had eczema at a young age of about 6 months old. I'm not sure what caused it, but I suspect it was family genetics predisposed me to it as my dad has traces if it and my older brother had a bout with it, too.My mom also gave me a formula after weaning from breast milk, she made from the  cream off  the top  of the milk or just the hand delivered farm milk and Karo syrup. Corn and dairy, not a good start being prone to get eczema anyway., but my dear late, beloved mother probably thought it was the best thing for me. I was her youngest of 7 children, and she probably used for the others or had to quit breastfeeding since she was such a  busy mom.

 

So, I assume my mother used steroid cream on me at a young age, since they were invented the same year of my birth, 1955. She was probably relieved to use such "wonder cream"  after pinning umpteen long white socks to my pajamas at bedtime to keep me from scratching myself bloody and every morning I woke up with holes chewed through the ends of the socks. Itching seems to be on my list of hated things in life as wool, mildew, mold, weeds, strong paint and varnish fumes, dust, certain cat hair, any kind of petroleum products, chemical lotions or cream and a lot of skin products irritated my eczema. I am multiple chemical sensitive and I don't know if the years of steroid use made me that way or if I was that way without them. I had a bout with severe migraine headaches from age 9-11 or 12 and  grew out of them, thank God.  I also get swollen eyes if I touch chocolate or high histamine foods, and that started about 10 years ago.

 

 I had IBS for a few years and was diagnosed with degenerative disc disease in my spine after I ruptured a disc at my job and ended up having to go on disability after several attempts to go back to work and having too much pain. I was told had arthritis in my back at about age 45 and then had a complete hysterectomy at age 47 due to lumps in my ovaries and uterus, which scarred my bladder, but thank God it is okay. I went on the Maker's Diet for the IBS and it cleared up and I never have problems with that anymore, either.. I highly suspect the steroids played a part in the hysterectomy as they mess with your whole immune, endocrine, thyroid, liver, kidneys, you name it, steroids can mess it up in  your body.

 

So, for a cumulative amount of about 40 years I faithfully smeared the poison Triamcinalone (formerly Kenalog and Aristicort cream) on my hands, the only place I really had trouble with my eczema and that is probably because I was using more detergent products, which are a huge aggravator for eczema. I have now switched everything in my household such as dish soap. shampoo, washing machine soap, toothpaste, body emollient, home cleaners to pure soap products made from plant oils or tallow, which are much easier on your skin and the environment.

 

After stopping the prednisone in April 2011, my  skin flared to a bright red, hot miserable condition for about 3 months. I looked and felt like I had a bad sunburn and spent much time laying in bed with ice packs in pillow cases on various parts of my pathetic body. The blood vessels were dilating all the time from the withdrawal of steroids, Dr. Rapaport told us in phone conferences. He said how often, how much and what strength of steroids I had used, determined the withdrawal severity and healing time. Dr. Fukuya estimate 10 to 30 per cent of the time you used for your body to heal, but it would heal and that was good news because I felt like I had a terminal illness.

 

I had terrible chills, pain, insomnia, anxiety, several lymph node lumps,  loss of appetite and weight and spent two to three time a day in hot, Epsom salt baths to warm up and stop the itching. I slept many, many nights in the bathtub. For about 7 months, that was my routine along with occasional Atarax, the antihistamine, but that and any other antihistamines just made me groggy, dry mouth and more itchy the next day, so I gave them up for good.

 

I began to have real bad pins and needles all over my body around my 8th month, and it got so painful I went to ER in tears and a panic attack thinking I had sepsis and made out my will, secretly hoping I would die and wake up in heaven with no more pain and itching of this steroid hell. I did not have infection and the first crazy doctor wanted to put me on Prednisone and got disgusted with me and walked out when I refused it. The dermatologists and doctors really need to study under Dr. Rap and Fukuya on this terrible condition. 

 

My second trip to ER was during another panic, crying attack from the number 10 pins and needles that I could not function with or even think straight. I could only cry and I normally have a high pain tolerance. This ER doctor was a woman and smart. She recognized the red skin syndrome and told me there was no infection and gave me an IV of Ativan, Previcid and Norco, which brought me down to a 1 pain level and a huge sigh of relief. She felt bad for me and wrote me scripts for all 3 as she knew I was in for a bumpy road. 

 

That was 8 months ago, which also brought with it steaming night sweats that would wake me up with insane itching and I would have to change pajamas and bedding twice a night. I also began to have a flash of heat and break out into a sweat in just seconds, something I never had after my hysterectomy. Around a month ago at the end of May, I began to calm down with the pins and needles and my night sweats and day sweats are not daily anymore, but the itching at night is pretty bad and I still use the Ativan and ibuprofen for the itching, which helps for the most part. I also want to try the medical cannabis cream as I have heard it helps pain and itching as well as sleep, so that is on my agenda.

 

I am coping as well as I can daily, glad that my son is still with me as this is a very lonely road and depression would like to swallow me up, but I hang onto Dr. Rap's words of hope "YOU WILL HEAL." I've also been in a support group of other red skin sufferers and seen them go from worse to bad to okay to good and healed, so I know there is hope. 

 

I stay busy with my own website about Red Skin Syndrome, a Facebook Page and two forums for our support group. I am hopeful as my itching gives me half hour or longer breaks during the day now and remember Dr. Rap saying the nerves were paralyzed and are waking up, so I keep praying they wake up all  the way and my skin rashes continue to fade into creamy, white skin. i have spots of that on my legs, but still rashy, pink areas on my feet, ankles, legs, stomach, chest, arms, neck and  shoulders. My back and my face are probably the best now and hands are the worst,but I have worn loose vinyl gloves pretty much the whole time and they do keep my hands from cracking.

 

I am very thankful for Kelly, Dr. Rapaport. Dr. Fukuya and all the great friends like Louise and others from 13 countries, that I have met in this past 14 months. I know that our suffering is not in vain. We will expose this travesty and save many babies, children and adults from this unnecessary steroid holocaust. If you suspect you have a topical steroid addiction, do contact the blog owner and go to our head website. ITSAN to get more information. God bless~ Joey

Day 214 Skin Changes

My skin seems to change so much with each passing week. It seems like there seems to be no typical pattern, just a "lucky dip" when I wake up and see what my skin is doing!

The TSW symptoms seem to be "on the move". In the beginning, my worst symptoms were on my face, neck and chest, where I used the most steroid cream. Now, 7 months into withdrawal, these areas are fading in colour, but my legs are in a really bad way. The wet wounds that I have had since January on the calves of my legs have turned into lots of tiny, fluid filled blisters, which are itchy and irritating and never seem to dry out. My legs are also very red and blotchy.

The good news is that at least I can hide my legs under a long skirt or pair of trousers. It is easier to hide your legs than your face!

I suppose it is all part of the weirdness of Red Skin Syndrome. I view the changes as positive, because at least it means that something is happening, which has to be a good thing. I am also seeing areas of normal coloured skin here and there, which is really encouraging.

Day 213 Scabby Nose

My skin is over the last flare and has now entered a "dry phase".

This is when the skin ceases to be red, wet and weepy and sheds its top layer, a bit like an insect shedding its skin!

I have noticed some massive improvements lately and even some normal coloured skin!

The only downside is that I have ripped the skin off my nose in my sleep and have a big red scratch mark down the middle of my nose.

When I was little, I would call this a "bacon nose" because the scab on my nose would remind me of streaky bacon!

So now I'm stuck with a "bacon nose" for the next few days. I may have to go back to wearing socks over my hands in bed to stop me ripping my face up in my sleep.

Day 210 Moving House With TSW

Wow, day 210, so that puts me at about 30 weeks off the steroids! I guess it feels like a pregnancy, counting the weeks, only at the end, instead of a new baby, you get nice, healed skin !

My "moving house" flare was short and sharp. I think a lot of it had to do with the fact I went a couple of days without a bath, which spells disaster for my skin. Once sweat and dead skin build up, it creates a vicious circle of flaring. I had a long, blissful bath yesterday and my skin instantly felt calmer and smoother.

Rest also helps. I had been on the go for weeks with no real rest or time out. I actually forced myself to take it easy yesterday and it definitely helped. i still have lots of work to do, but by taking short breaks and getting my legs up, it helps the skin and the leg swelling.

Sleep is vital with TSW, although it can be hard to get when the adrenals are messed up. I was so hyped up about the move that I didn't sleep properly for about a week and was surviving on a couple of hours sleep. The last 2 nights have been better and I have been reaching my sleep quota, with good results for my skin.

TSW is a huge learning curve, but we have many months in which to learn what helps and what doesn't. I am now in my "skin groove", as I know what works for me in the bath, what skin cleansers to use and what moisturiser to use. It is definitely not a case of "one size fits all", as what works for me will almost certainly not work for someone else and we all have to find the products that suit our skin. For example, I swear by the Body Shop Hemp hand protector cream as all all body moisturiser, as it is one of the few creams I can tolerate, but other members of the itsan forum find that the cream irritates their skin. At the same time, some of them like using Salcura Zeoderm, which I find stings my skin (although it works wonders on my daughters eczema!). We have to experiment with different lotions and potions and trial sized bottles are a great way to see what works for you.

I will get round to posting photos at some point, but my camera USB cable is still somewhere in storage!

Day 209 Moving House

OK, well here I am at the other end!

Over the last few days I have been moving all our stuff to the new house, but I'm pleased to say that I am finally online again and back to blogging.

The stress of the move has taken its toll on my skin and I have a red, burning rash all over my body, the worst flare in a few months. It is irritating, because I was previously at a stage where my skin was almost clear and it feels like I have gone back to the start again. I was expecting it though, as I know stress is bad for the skin and all the hard work of moving has given me very little time to sit down and actually rest. It has helped me to understand the "mechanics" of TSW a bit better though.

Basically:

 stress=flare +

lack of sleep=flare +

too much activity with no rest=flare +

sweating=flare +

moving house=mega flare!!!!

I hope my skin will calm down soon. The other problem I have is that my legs are swelling up with fluid when I am on my feet a lot. I feel like an old lady!

I wanted to post some photos of my skin, but the wire that connects my camera to the computer is still in a box in storage!

I'm staying upbeat and hoping that the flare will pass soon. The good thing about flares is that they usually lead to a period of good skin, so I'm focusing on that.

Day 205 Scratching Myself to Bits

Nearly had a mental breakdown when the solicitor phoned this morning and said that our payment had not been received at her end. How could thousands of pounds vanish like that?

Anyway, I was pacing around the house like a loony and scratching myself to bits. Scratchy monster had me in his grip! The money was eventually found, but only after my nerves had been fried.

Here is a picture of the aftermath:

My arm is all red and angry due to the crazy rubbing and scratching. Moving house with TSW is a bit mad.

This is going to be my last blog post before the move. Hopefully they are reconnecting me on Thursday at the new house, so I will see you all on the other side.

If they haven't wheeled me off to the loony bin by then.....

Day 204 Staying Upbeat

Had a crazy day running round like a headless chicken, boxing up the endless amount of junk in our house ready for the move on Wednesday.

The stress has made me pretty itchy and I keep scratching away at my arms. I think it is because scratching releases endorphins! I am also drinking pints of chamomile and valerian tea to try and put myself into a herbal tea-induced stupor and calm myself down.

I'm hoping that my skin will settle once we have moved. We won't be so near the motorway, so I'm hoping that my asthma will improve. The new house has laminate flooring instead of carpets, so it should help keep the allergens down.

People often comment and ask me how I can be so upbeat and positive during the hell of steroid withdrawal.

The answer has to do with the difference between suffering and endurance.

Suffering is when you feel pain and there is no way out.

With endurance, the pain is just as real, but there is a light at the end of the tunnel. It is that hope that helps you to endure the pain and cope with it.

Yes, rebound from steroid creams is awful. The symptoms are vicious and nasty and disabling.

BUT

The 2000 people that Dr Rap has healed, along with the many, many more in Japan and other countries who have posted their testimonies and photos on the Internet prove to me that it is possible to have lovely, eczema-free skin at the end of this.

And that is why I am positive and upbeat. Not because steroid withdrawal is easy, but because I believe I will heal, even if it takes several years.

Day 203 Sunday Flares

I have passed comment previously how my skin always seems to flare on a Sunday. It can be fine all week, but as soon as the weekend comes, my skin will start acting up again.

This week is no different, although I am flaring somewhere different from usual. My right thigh, which was previously clear, has come out in a burning red rash. The rash is actually giving off quite a lot of heat and when I put my hand on it, it feels warm to the touch. My arms are also flaring and itchy.

On the positive side, at least the rash is somewhere that I can hide it with clothing. I would still love to know how my skin knows what day of the week it is!

6 1/2 months into withdrawals the flares are definitely diminishing in intensity and don't have the power to slow me down like they used to. Despite the rash on my leg, I have been busy preparing for our impending house move on Wednesday (stress...stress!), something I could not have contemplated during the worst stages of withdrawal.

I'm like: "C'mon skin! Is this the best you can do?" But I don't say it too loud in case my words come back to haunt me!

Day 202 Stress and Flares

I'm so happy to log on today and see that my pageviews have topped the 20,000 mark. If just a fraction of those people manage to get off the topical steroid creams, then I am happy to have helped them.

Today I definitely noticed a correlation between stress and flare-ups. I am in the process of moving house and it is a pretty crazy time. Every time we think something is going smoothly, we get a call and there is another "blip" to stress us out. Needless to say, I have been quite itchy!

When I am stressed, I start to feel really tense and start clawing at my arms. I think it is because scratching an itch releases endorphins, which make you feel good, or maybe it is because stress increases histamine levels. Whatever the reason, I get the itchy bugs all over me when I am tense and upset. I don't want to scratch too hard and put big holes in my arms as there is still lots of work to do and I don't want to be ill on moving day.

Interestingly, there have been quite a few posts on the itsan forums about itching, particularly from people who have itching all night. Itching is a very distressing symptom and TSW is very stressful in itself.

I've just poured myself a cup of chamomile tea and am trying desperately to chill out.....calm....calm....calm..

Man, I'm itchy typing this!

Day 201 Better Labelling of Steroid Creams

I have just been reading kelou's blog: “The Boy, the Greek Fire and Me,” about her struggle to help her son who suffered badly at the hands of the steroid creams.

The picture of the boy struck a chord with me, because I have been in the same situation as him and know how awful and unnecessary this thing is. Something as simple as labelling steroid creams correctly would go a long way to preventing people from getting steroid induced dermatitis in the first place.

We need to campaign for better labelling of steroid creams. This is particularly important when these creams are used on young children. Better labelling would enable parents to see exactly how long to use the creams for and make them aware that prolonged use of these creams can lead to addiction.

Visit the blogs on my blog list. Each person has a story to tell about how steroid cream addiction has affected them. 

Day 200 Trip to Safari Park

Happy day 200 to me! Yay!

Life is good. Life is normal.

We took the kids to the Safari Park today. The weather was absolutely awful (British Summer, typical).

We got drenched from top to toe in the fairground. Our clothes were so wet you could wring them out.

Despite this, we had a great time. We enjoyed the animals and the kids enjoyed the fairground rides.

And guess what?

My skin didn't bother me at all.

The moral of the tale is this: If you are in the early stages of steroid withdrawal, take heart. A few months ago, I was laid up on the settee with no energy and burning oozing skin. I wondered if all this talk of a cure was really true. I feel so much better now. Time really does heal. People keep coming up to me and telling me how much better my skin looks.

So many people give up in the early stages of topical steroid withdrawal because the symptoms are absolute hell and will leave your whole world grinding to a halt for several months.

But I'm glad I stuck with it.

It was worth it in the end.

Day 199 (photos)

It doesn't seem that long ago that I was posting my progress at 100 days. Now here I am at nearly 200, the time is flying by! I thought I would post some progress photos to illustrate how things are going for me.

Life is pretty good. My skin is not perfect, but it is tolerable, and trust me, with TSW, tolerable is way preferable to oozy, red, itchy and sore! I can go about my daily business as normal without my skin getting in the way. I feel good and that is the main part. The rest will come with time.

I have been reading a lot of comments from the itsan form lately from newbies just starting out on this steroid free journey. They have all the same questions that I had, namely wondering whether healing is really possible by quitting steroid creams. They are red, sore and oozy and see no end in sight, just like I was a few months ago. But things do get better. Slowly, very slowly, but things do get better.

If you compare this "mug shot" to previous ones on the blog, you can see that my face is definitely less red. The skin is mainly white, although it has some dry patches and blotching.This is the area where I used the strong steroids, so it will take the longest to heal. Progress is slow, but discernible.

The same goes for my neck area. The blotches are really lightening up. The oozing has stopped again and the area is healing well. The neck area had been really problematic for me during TSW and at one point I could not even turn my head because the skin was so tight, but now the skin is soft and supple, even though it is slightly blotchy still. I am happy with how far I have come with this.

The skin on my arm is pretty much normal. I'm very happy with the progress here. If you look back over the blog at previous pictures, the skin on my arm was very tight and had no elasticity, but it is great now. I can bare my arms in the sun (if we had any!).

This is the latest photo of my troublesome wound on my calf. I can get it to this stage using moist wound healing, but cannot quite get it to return to normal skin. It is the best it has been since January though, and isn't giving me too many problems. I think it will go away on its own when it is ready. The wound on my other calf has almost vanished completely. Look at the lovely skin around the wound. It is normal skin!

So, almost 200 days off the steroids and things are progressing nicely. I am so happy with the way things are going and how I feel. I have come a long way from that incapacitated, burning, oozy person that I was at the end of last year.

There is life after steroids. I hope my photos help people believe that. The next lot of pictures I post will be even better, and I can't wait to post some of completely healed skin.

These things take time.

Baby steps...baby steps.....

Day 196 Scratched my Arm Up

Lets play a guessing game....

Guess what terrible, fearsome creature did this to my arm?

OK, yes. It was me. I woke up this morning with deep dig marks in my arm where I must have clawed at the skin during my sleep. My fingernails are pretty short, so I must have really gone crazy. I have no recollection of doing it.

For some reason, my skin seems to flare every Sunday. It is like my skin knows the day of the week! No matter how good my skin has been during the week, I can guarantee that my skin will flare on Saturday evening and that I will have a bad day on Sunday.

I'm oozing again too, on my neck and chest. Boo.

Oh well, I hope that my skin improves in the next 4 days ready for my 200th day progress photos.....