Monday, 23 November 2015

4 Year Anniversary Post

Well I finally made it 4 years into TSW.

Sadly, I'm not healed. I thought I would be by now, but I'm not.

On the positive side, TSW isn't really preventing me from doing anything. I can do jobs, go out and day trips and socialise. My skin isn't in such a terrible state that it holds me back in any way.

On the downside, it's still far from perfect. The moisturiser withdrawal is helping a lot and my skin isn't in an active flare, but it doesn't look completely normal. It's still dry and blotchy with uneven tone.

The last year has been a hard one for me in TSW, as my progress seemed to go backwards rather than forwards. Back at the 21 month point my skin was almost perfect, but months 37-48 have been much harder and that has been hard to deal with psychologically.

At 4 years in, I thought I'd have all the answers, but I seem to have more questions! I form a hypothesis and believe it and then something blows it out of the water and changes everything.

I know TSW is not as simple or linear as I expected it to be in the beginning. I expected gradual improvement and progress, but my progress has been all over the place. Why? I have no idea, but everyone else seems to be the same too.

I read that Dr Rapaport has reported seeing longer healing times in his patients due to increased usage of potent steroids in recent years. What we thought would be a 12-18 month healing process can take 5-7 years, maybe more, who knows?

I remain strangely optimistic, even at 4 years in. TSW is not so unbearable that I can't cope and I'm grateful for that. I read a story recently of someone who healed completely at the 5 year mark, so maybe this time next year I will be done with this.

I usually make a big deal of my anniversary posts by writing a special blogpost or writing a month by month analysis of the preceding year. I think I will be more understated this time round. I feel like I've already said everything that needs to be said.

My big goal this coming year will be converting from my current steroid inhaler to a cromolyn preventer. I don't know whether my doctor will let me do this yet, and I'm not even going to attempt it until the weather improves, as winter is a tough time for me. I scared that being completely steroid free may put me into a secondary withdrawal, but I'll cross that bridge when I come to it.

I probably won't be blogging much over the coming year; just the odd photo update and any news that happens to be of interest.

I'm sure that opponents of TSW will be taking this opportunity to have a good laugh at my expense and consider me a lunatic for persisting for 4 years with no immediate resolution in sight. I couldn't care less what they think. I'm glad to be off the steroid creams and it doesn't bear thinking about the amount of tubes I would have gotten though in the last 4 years if I hadn't stopped when I did. That has to be better for my long term health than being dependent on the 'roids. Has it been tough? Yes, at times, but most the time my skin has just been stagnant and not too much bother. I'm happy with the decision I made and I remain determined to be steroid free, whether I eventually heal or not.

Best wishes to everyone going through this. Here's hoping that the coming year will bring increased awareness in the medical community and doctors will stop being so quick to prescribe steroid cream as the answer to everything.

Friday, 20 November 2015

Topical Steroid Withdrawal on TV

TSW was mentioned on a TV show called "The Doctors" recently.

Well done Briana for sharing your story and raising awareness.

Sunday, 15 November 2015

Going to Give Moisturiser Withdrawal Another Try

I feel lucky inasmuch as I've been able to tolerate moisturisers throughout most of my TSW process. In the early days, this was a real lifeline to me and enabled me to cope with everyday situations with more confidence. I was able to use a variety of oils and creams with no adverse effects at all.

HOWEVER...all that seems to have changed recently. It started with my beloved hemp cream, that I've used as the main cream during withdrawal. Suddenly my skin started to react badly to it and itch terribly when I applied it. Over the following months I had the same result with all moisturisers. It seems to be a type of hypersensitivity reaction.

Therefore, I have decided to give moisturiser withdrawal another go. I tried it a while back and didn't like it, but I feel like I have no choice now as creams feel horrible on my skin. I know that Dr Fukaya said that hives and sensitivity were a sign of final healing, so maybe this is the last push before my skin heals completely. It's actually not feeling too bad right now and I'm preferring the dry feeling to the itchy wet feeling.

According to Tommys Skin of Rose blog, Dr Sato says that: 'moisturisers' here mean using emollients, creams, lotions, oils, thick bandages, staying in bed all day, taking a long/frequent bath, make-up, picking up scabs, wiping off ooze and drinking too much water.  I hope to follow this as strictly as I can, although I do love a long bath!

I'd appreciate feedback from anyone who has tried MW, especially if you have any tips. This is all new for me, so voices of experience are welcome.

I'll be posting an update soon, especially as I'm near my 4 year anniversary.

Best wishes to all.

Friday, 13 November 2015

Steroid Cream in the News...Again.

Well done my husband for spotting another article about steroid withdrawal in today's Daily express.

When he read it, he said "her hands look like yours!"

The poor lady was using 12 tubes of steroid a WEEK, which her doctor seemed quite happy to prescribe. Thank goodness she managed to get off them.

Wishing her a speedy recovery.

Monday, 19 October 2015

Itsan Representatives Attend Major Dermatology Conference

Itsan was pleased to announce that two of its members got to attend a four-day conference run by the American Academy of Dermatology Association. During the conference they got to speak to many dermatologists, a large portion of whom had not heard of Red Skin Syndrome and Topical Steroid addiction. They received a number of business cards from dermatologists keen to learn more about the condition.

You can learn more about the AADA conference here.

Wednesday, 14 October 2015

Itsan Forum Reaches 3000 Members!

I just logged on today to see that the Itsan forum membership is now 3002 and rising every day. We have come such a long way in such a short time.

I'm also pleased to see that the main TSW discussion group on Facebook is almost at 5000 members and there are other, smaller discussion groups on there too, as well as dedicated areas on the British skin foundation forum, talk health and eczema voice websites, to name but a few.

This is in addition to over 100 blogs on the subject of topical steroid withdrawal. Everyone who has contributed to the discussions online has helped get the information out there. The good news is that our collective shout-out has now got the medical community paying attention and doctors are starting to get on board and take us seriously.

Let's keep the discussion going, people. The word is getting out but there are SO many more people who need to be reached. When TSW is recognised by medical professionals worldwide as a real medical condition, we can be proud that we had a part in telling the world about this terrible affliction.

Thursday, 8 October 2015

Guest Blog Post: Visit to Dr Sato

The following post has been copied directly from the Itsan forum with kind permission of the author. I thought it would help a lot of people so have reproduced the post in its entirety here for you all to read. Many thanks to the author for sharing this valuable information with us:

Hello everyone, 

I've been waiting to make this post, I don't know if it'll be helpful but I decided, every information and experience counts. 

A month and a half ago, I visited Dr.Sato in Osaka, Japan. 
I was 17 months into starting TSW, and was flaring almost as bad (about 90%) as my first flare since TSW started. I needed some answers to see if I was on the right path. I only found out about itsan a month before the visit and I was not getting enough understanding or support from my family that I was going through steroid withdrawal. I understand that they were as confused as I am and didn't want to see me suffer anymore, so they wanted me to go back on steroids and that's what led me to Japan.

I initially inquired Dr. Fukaya about visiting his clinic, but he had referred me to Dr.Sato with compliments that he is Japan's number 1 leading expert in TSW. I understood this as Dr. Fukaya is not a practicing dermatologist anymore. I called the Hannan Chuo Hospital in Osaka to book an appointment and it was not that difficult to get through to speak with Dr.Sato. I was booked for seeing him two weeks later. I had my father accompany me to see him, hoping he can also get a check up with the doctor (as he is also a dermatitis sufferer).

The staff's at the Hannan Chuo Hospital were amazing. They were very kind and polite and even with their limited use of english, we were guided through our administrative procedures very well. Dr. Sato speaks good english so I had no problem communicating with him. I was the first international patient to visit him, and I found out later that he made extra time to speak with me to answer all my questions. I did not know that he had seen all the Japanese patients first in the morning and left the afternoon time available to our consultation.
He is a kind man, and he knows how to listen and speak his thoughts carefully. I could tell this because he would always pause in thought before answering my questions. 

After blood test and urine test, I waited in the waiting room and I saw quite a few amount of men and women who looked like they were obviously going through a steroid withdrawal. Some were severe, some looked liked typical eczema cases. It was heart wrenching to see a baby and a boy going through the most severe withdrawal, their entire body was red, bloody and full of scabs. The dermatology department of the hospital admits patients who are specifically going through steroid withdrawal.

When he saw me I was already at a 80% healed state from the outside. I showed him the steroid history he had initially requested and some photos documented in a timeline. 

The first thing he said to me was "You have no skin lesions, you are not eczema". 
Ofcourse my father was dumbfounded. He observed my face and arms and said that my symptoms were not the traditional eczema patches. I knew this as well as my symptoms arose in a different form - as nummular eczema patches. They clear up with no dry patches, but they come back fast. Month before, I still had red skin syndrome on my face though, that was typical- oozing, red overall or as if a map is drawn on my face and burning. 
He said he has seen some of his Japanese patients with the same symptoms, however one thing clear was that it was due to too much steroid usage. 
After looking at my blood test and urine test, he said I was very very healthy. All my blood test and urine test came out normal. I accredit it to all the healthy diet and exercise I have been doing and a very stress free life (not working). He also had asked me if I had eczema as child hood and I said never until 27. He then asked my father if he had applied any steroids on me as young child, but he and my mother confirmed that there were no steroid usage as child . 

He said I will get better, but did not say how long it will take to heal. "It will take a long, time. The skin will heal surely but (for some) slowly, getting better with time!"

I don't know how helpful it will be but I will write down the question list I have asked (I was rushed to finishing the questions quick as we were concerned that we were holding back a lot of other patients). I wished that I asked him more scientific details of the effects steroid does to our skin and why it takes so much time to recover but I figured that this whole thing is still in preliminary stages of research and hard to pinpoint so I did not ask any further. 

TSW and Symptoms

1. How do you define end of TSW? 
- After 5 years of normal skin after the last rebound. 

2. Should I use mositurizers? 
- No moisturizers, no shampoo and no body wash. Shower only 3 times a week as water acts as a moisturizer. Exercising is recommended as sweat keeps your skin moist. Females should wear make up only when needed, once a month (eyebrows, and lips only).

3. Would it be okay to go on immunosuppressants or allergy shots? 
- No, immunosuppressant is dangerous and allergy shots would not help as it does not prevent rebound reactions from steroid withdrawal.

4. I feel like our body remembers the worst its been during a rebound and always has a potential to relapse. Is this true?
- Yes, using steroids on a 3 month old for a few days can cause the skin to remember what it was like whilst using it, it can remember for rest of life. 

5. I have taken traditional chinese medicine and I feel like it worsened my symptoms. What do you think?
- I tell my Japanese patients not to use tcm as some practitioners use ingredients that imitate steroids. It only delays healing.  

6. I took antifungal medicine for toe nail fungus called sporanox, does this interfere with steroid withdrawal? 
- It is ok. (He prescribed me antifungal liquid, which I did not use)

7. I have been eating all vegan diet and no gluten for over a year. Does diet matter? and how about detoxing through sweating / exercising?
- Diet does not matter. You must eat some fats and proteins as they are necessary for forming new skin cells, a balanced diet should be good, however junk food would obviously not be good. I always tell my Japanese patients to exercise as it will help the skin to retain moisture. Sweating excessively does not help heal faster. 

8. I have a list of substances I am allergic to- found by contact dermatitis and blood test. Do these contribute to my rebounds? (I found that I have allergies to emulsifying agents and solubilizing agents found in topical steroids and antibiotics, and vaccine preservatives)
- If you did have reaction to these you would have papules and bumps right now, but by observing your skin patterns and its clear periods, you do not have severe allergies to these substances. 

9. This condition is so hard to bear with and hard to keep a working life. When do you think the skin is stable enough to deal with certain stress levels at work?
-Once The severe steroid withdrawal symptoms are over you should continue to do easy work. It is better for psychological health as some people become depressed or over-stressed with skin if they are not distracted by work. 

10. How do you deal with the oozing? 
- Leave the ooze to dry and crust over. The ooze contains elements needed to help underlying skin recover faster. Do not pick on scabs.

11. How do you know the steroid withdrawal is officially ended? 
- There is no way to know until you die. It is also the same with not knowing you were on the path to addiction in the beginning. 
Small portion of the large population will not get addicted to steroids to the amount you have used and they will be okay to continue using them, but you have been addicted which is why you are going through irregular skin symptoms. 

Additional questions I really wanted to ask was:

1. After a year of steroid withdrawal, if the patient decides to use steroid again for few days to a week, does this bring back the steroid withdrawal process back to the beginning?

2. Is it better that for people who were not as strongly addicted to steroids to keep using them sparingly until the symptoms diminish over the years?

If anyone has any information on these questions please let me know :)

He prescribed me some antihistamines, I guess it's the best he could do. But I have not taken them since. I still am trying to go drug free through out the rest of my steroid withdrawal! 

Dr. Sato believes that the fastest way to healing is to leave the skin untouched (unless it is severely infected). No additional baths, oils / moisturizers, sweating or even diet to recover. 

He also showed me photos of people who went through extreme withdrawals- huge bloody scabs on face to the point it was hard to recognize the appearance, but all of them recovered back to normal skin conditions. He calls such reactions a good sign, that the body is trying to recover. 

I know I have used steroids more than my body can handle even if other doctors say its not enough to be addicted. The amount of antibiotic courses I have taken and other mixed medicines have made my immune system low and made my body susceptible to addiction so I am now paying the price. If only we could gauge the steroid bucket inside us, it is true and a fact that this addiction must be closely monitored by a professional who will prescribe the drug!

As for now I suppose I will keep my routines, keeping a constant diet and intake supplements that would hopefully give my body the boost it needs to keep recovering. 

Stay strong everyone, you will spring forward, much further than you imagine.  :thumb up: