Thursday, October 31, 2013

Moisturizers - Harmful or Helpful?

I want to talk a little about what I believe is a widespread misguided belief that moisturizers should be used on one's skin. For the purposes of keeping things simple, when I refer to moisturizers I am including emollients, humectants, etc. Here are just a few common things we have all heard many times and have even come to believe ourselves.

"Moisturizing is the protective layer between your skin & factors like pollution, over exposure to sun, harmful effects of sun & wind etc. it enables the skin to preserve its natural moisture & is a must for all skin types, especially for dry skin & aging skin. It is fundamental to all kinds of skin care. Lack of moisturizer increases dryness & speeds up the wrinkling process."

"Moisturizers are proven to help treat dry, damaged skin and improve skin texture. Maintaining a good moisturizing regimen will make you more comfortable, and it will also make you look better because, let's face it, nobody looks their best with skin that is dry and flaky."

"Another reason to use moisturizer is that it can be good for your health."

"If you think your skin is dry, moisturizer is the best thing you can do for it.”

"Wind, cold temperatures and heated houses in the winter can all dehydrate the skin, which can cause eczema to flare up and make the skin itchy and dry. “Prevention of this dryness by moisturizing is the single most important factor in protecting the skin from the elements."

The epidermis is a complicated organ. The epidermis forms the outer layer of skin, creating a tough, renewable, waterproof barrier against the environment. It is a type of epithelium, the tissue that makes up surfaces and linings in the body. Over most of the body the epidermis is relatively thin, while on areas such as the palms of the hands and soles of the feet it is much thicker and hairless. Depending on its location, the epidermis may contain hair follicles, nails, and sweat and sebaceous glands. The study of skin is known as dermatology. For years we've been told to moisturize our skin to keep it hydrated, but now some are calling to question whether this is actually harmful to the skin's natural process. To moisturize or not, that is the question.

Moisturizers work to prevent water loss by coating the skin with a substance to trap moisture - replicating what the healthy sebum balance does normally. Studies show that for dry skin syndromes like xerosis, moisturizers are effective. But some believe that topical hydrators should support the natural hydration process rather than simply supplementing moisture. The moisturizer may offer temporary relief, but the cell disruption must be isolated and corrected for dry skin to actually be alleviated.

Regardless, how then, would moisturizers themselves be harmful to the natural hydration process? Many now believe that when cells recognize that an outside source has already hydrated the skin, there's no need for natural hydration to take place. This means that the cells become inactive and stop the moisture production process, which leads to dry skin. They liken it to a moisturizer addiction.

Some advise against using a night cream because regular application interferes with the tasks your skin undergoes at night like regenerating, balancing oil production and expelling impurities. Based on this theory, regular application over time means that the skin becomes less able to care for itself.

Studies do show that over time, moisturizer use has an impact on the skin. A study from the University of Copenhagen confirmed that skin barrier function could be adversely affected by use of moisturizers. In the study, trans-epidermal water loss was significantly higher on the arm treated with moisturizer than on the control arm, which suggests that long-term treatment with moisturizers on normal skin may increase susceptibility to irritants. But, it isn't quite clear if the natural hydration process is quelled because of the moisturizers' regular hydration or if the other ingredients in them are simply damaging the cells and causing irritation.

A study in the American Journal of Clinical Dermatology suggests that certain types of emulsifiers may weaken the skin barrier.

Other studies pose questions as to whether moisturizers' inherent capacitance is a source of false positive results.

Moisturizers also block the skin's natural repair mechanism. If left to its own devices, your skin recovers most of its ability to moisturize itself after a few weeks of feeling dry and tight. So, using moisturizer traps your skin into a vicious cycle. Using too much moisturizer, or all the time makes skin cells lazy and in the presence of exogenous oil (i.e., moisturizers, etc.), they will not need to produce or work to produce the oil necessary. Your skin knows how much to produce and when. Your job is to keep skin clean (not sterile) of old and hardened oil. You don't want to create a 100% sterile surface for yourself. Some of these germs are beneficial for homeostasis of skin and our bodies. After all, we are composed of 70-80% bacteria (by number, not mass). Bio-flora in our bodies, including our skin, are necessary for proper maintenance of our system.

Most of this information pertains to the effects of moisturizers on normal skin. If using moisturizers can damage normal healthy skin, just think of how they can affect already damaged skin. However, it seems moisturizers can be beneficial for damaged skin if used for very short term time periods, depending on the situation. People attempting topical steroid withdrawal face a much longer timeline, so using moisturizers is probably not a good idea to do throughout the process because one must conclude, based on current knowledge and good old fashioned common sense, that moisturizing during tsw can prolong recovery.

There was a recent Japanse conference held this year called "The 24th Lecture Presentation on Atopic Dermatitis in Tokyo". The doctors on the event all agreed that moisturizer withdrawal was 'usually essential' rather than 'encouraged'. They explained that only about 10% of TSW patients healed without moisturiser withdrawal, and they were all mild case patients.  TSW patients who recover well are usually doing moisturiser withdrawal strictly, according to the doctors.

After hearing about this I exchanged a few emails with Dr. Fukaya. His comments on diet, moisturizer withdrawal, the adrenal glands, etc are very interesting. He says the adrenal glands function normally in most TSA cases, and diet has little effect. He also says he agrees with Dr. Sato in that moisturizer withdrawal speeds up TSW in certain cases. He is careful to point out that some people who try moisturizer withdrawal can’t handle it and go back to using TS, I assume due to the increased pain and suffering going moisturizer free causes in the early stages. He recommends moisturizer withdrawal if one feels strong enough to do it to shorten the TSW period. He also suggests using moisturizers at an older age after TSW is complete. Here is the link to those communications.

So should we moisturize? I say yes and no. Yes, very sparingly for short durations ONLY when absolutely needed. And, yes when we are in old age. But, NO for the most part, unless of course, you don't mind lengthening your withdrawal period considerably. I wish I could find statistics on how much longer it takes to recover tsw using moisturizers compared to not using them. I seem to recall reading somewhere that tsw lasted an average of 1-2 years, but can't remember if that was with using moisturizers or not using them.

Friday, October 25, 2013

October 24th - How To Speed Up Topical Steroid Withdrawal - Recovering From Betamethasone Dipropionate Ointment USP, 0.05%

People are often under the misguided impression that topical steroid withdrawal can not be sped up and the only cure is "time".  This false assumption is due mainly to the fact that most people who have completed topical steroid withdrawal used moisturizers during the course of their recovery, and few people have attempted TSW without moisturizing.  Unfortunately, most of these people likely prolonged their suffering and recovery period by using moisturizers during the recovery process.  Very few have attempted TSW without moisturizing due to the common belief that one should use moisturizers to make oneself as comfortable as possible during the recovery, since "time" is the only healer.  However, there is now much evidence that disproves this false assumption.

Early in my own topical steroid withdrawal I found that my broken skin wouldn't heal over due to being clogged and kept "wet" from the various moisturizers I tried.  After several weeks of my broken skin staying the same I concluded my slow healing was due to the pores being clogged and the moisturizers were not allowing the skin to breathe, dry, and naturally heal, so I quit moisturizing, exposed my skin to the sun as much as possible without risking sunburn, and my skin splits and fissures healed over quickly.   It took a couple weeks from start to finish and it was brutally painful because the skin on my hands dried up like the Sahara desert, my fingers and palms were red and swollen, and my skin felt hot like I had an infection.  The skin barrier on my palms was completely destroyed from my prior prolonged and increased topical steroid use.  The intense burning, itching and nerve pain along with tightness of the skin was nearly unbearable.  I had one finger dry halfway closed and couldn't fit a glove over my right hand in the second or third day, so I soaked in a bath to soften the skin and was able to straighten my finger out without breaking the skin open.  It dried in the sun extended and I then couldn't close it all the way ugh!  That was better than being stuck closed though, at least I could get a glove back on.  But, after a couple more days of  self induced torture my skin dried over, scabs formed and fell off, and new skin was in it's place.  The relief was unbelievable.  For once I didn't have to wear gloves to guard against infection!  Yay!!  Mind you, I only decided to stop moisturizing because I felt my pain and itching could not possibly get much worse, and so did it out of sheer desperation, and the realization that it should work.  It just made sense to me after thinking for countless hours about why my skin wouldn't heal.

After my first two days of nearly 90% healed skin I applied a moisturizer again (don't ask me why I don't know) and immediately went back into a flare within hours, good lord!  It took another 2-3 weeks to heal my skin again by stopping moisturizing and repeating the method I used the first time, mainly dead sea salt baths and sun exposure.  The second time around was almost as painful as the first, but not as bad since my hands were in better shape this time around.  It did take a little longer due to lack of sun after the first week, but I was once again much more comfortable.

I truly feel if I had never stopped moisturizing I would be a total mess right now.  Instead I am doing very well considering, and feel I'll complete my TSW sometime between month 6-12, if not sooner.  Today is my 4-1/2 month mark.  I may be totally off base and have a horrible rebound much later down the road but we'll see.  If I do, I'll treat it the same way by allowing my skin to breathe naturally which enables it to heal quicker than it would by smothering it.  My hands are currently in better condition then they were prior to TS usage, and are slowly improving like a turtle crossing a 100 mile wide road.  Each week they are slightly better and  I haven't had to wear a glove on my left hand in a couple months, but do still wear one on my right hand because there is a small spot on my palm where I first started applying the TS that has extremely thin skin and still continues to break open, heals over, and repeats again.  But, the skin is feeling noticeably stronger each and every week.  I can't imagine going through this hellish experience using moisturizers.  I still remember the uncontrollable scratching they caused me and how my skin would just kind of melt away when I went into an itchfest.  Not that I don't still have my episodes, but not the way it was when I used moisturizers!

It is now very apparent to me that most everyone who has completed TSW using moisturizers has taken a much longer time to heal and unnecessarily suffered far longer than necessary.  These same people also seem very resistant to the idea of not moisturizing since they themselves didn't take that route.  However, recent evidence has come out of a Japanese conference (The 24th Lecture Presentation on Atopic Dermatitis in Tokyo) showing that moisturizer withdrawal is practically essential for TSW recovery.  "Dr. Sato presented a rate of healing on TSW at his hospital during his presentation.  He collected data from 360 patients over the age of 3.  The doctors at the event all agreed that moisturizer withdrawal was 'usually essential' rather than 'encouraged'.  They explained that only about 10% of TSW patients healed without moisturizer withdrawal, and they were all mild case patients.  TSW patients who recover well are usually doing moisturizer withdrawal strictly, according to the doctors."  See the Skin of Rose Blog for more info on this.

I exchanged a few emails with Dr. Fukaya just last night and learned a great deal.  I am forever in his debt.  His comments on diet, moisturizer withdrawal, the adrenal glands, etc., are very interesting and informative.   He says the adrenal glands function normally in most TSA cases, and diet has little effect.  He also says he agrees with Dr. Sato in that moisturizer withdrawal speeds up TSW in certain cases.  He is careful to point out that some people who try moisturizer withdrawal can’t handle it and go back to using TS, I assume due to the increased pain and suffering going moisturizer free causes in the early stages.  He recommends moisturizer withdrawal if one feels strong enough to do it to shorten the TSW period.  He also suggests using moisturizers at an older age after TSW is complete. 

Monday, October 7, 2013

September - 3 Month Mark

I finally found a doctor willing to learn about topical steroid addiction and withdrawal and who wants to help me. What a relief to know you have someone to help identify an infection or other serious problem if one should arise.

My hands have flared and the skin has broken open again. They were actually about 85% healed but tsw has many unexpected twists and turns. I'm really not sure if my hands fell apart again because I scratched them too much one night, or because of the nature of the withdrawal process. It started when I applied a lotion on my hands to try it and then after experiencing severe itching I washed it off and soaked in the tub to try and get it all out. It's been slowly downhill since.

I've been taking daily dead sea salt baths to help the skin and relieve some of the symptoms. Also just started taking omega 3 fish oil, flax seed oil, vitamin D3, and probiotics daily, along with my low potency vitamins.

August - 2 months in

I saw my GP today for a follow up. A few weeks prior to this appointment I had emailed him several links to websites that explain the topical steroid addiction and withdrawal process and he said he would look at it. I had also left some info on the subject with him the last appointment so was expecting a good conversation on the subject with him. What a surprise when he is in and out in under 3 minutes and doesn't even mention the subject. He could see my hands were obviously better via NOT using topical steroids and even commented on how good they look. I was dumbfounded. Just several weeks earlier I told him in no uncertain terms that I had tsa and was going to go through tsw and needed his support. I gave him the info to learn about it, and still all he can do is say my hands look better and completely ignore the subject as well as not attend to my other health issues. What a freakin moron! This guy prescribed me 5 tubes of one of the most potent ts on the planet last year when all I wanted was to refill my one script for one tube!

I had to chase after him down the hall to ask for a script for an antihistamine. I have many stories of outright medical negligence to tell about with doctors I've seen, so will save those stories for later, because there are so many! There are some real doozies believe me.

My hands are slowly improving but I'm having lots of nerve pain in them and an extremely difficult time sleeping more than 3 hours a night. The itching is so intense I can't even describe it.

July - first month under my belt

It's been a horrible couple months. Every moisturizer I found seemed to irritate my skin. Things have stayed the same symptom wise other then a few weeks ago what appears to be real eczema popped up on my arms, legs and feet. It doesn't bother me at all.

 I recently and saw one of the top derms (supposedly) in the west coast. He was not very receptive at all to my self diagnosis of tsa and only wanted to prescribe more steroids. After I told him I wasn't ever going to use ts again he could only say "what do you want me to do"?. I said I wanted him to help me get through tsw, and possible UVB light treatment. He told me that "I HAVE A CHRONIC DISEASE!". Well, after I got home I received a survey via email and I told them how I felt, ending it with "you guys have your heads up your asses". So, I think I burned that bridge. Any derm that has hand sanitizer in every room for people to use freely that contains known skin irritants and cancer causing chemicals is not a good derm anyway in my opinion.

I decided to stop using moisturizers since I had a strong impression my skin splits weren't healing due to having the moisturizers on my skin all the time, and the stuff was just making my hands itch too much. Then all hell broke loose because my hands dried up so bad I couldn't bend some of the fingers without breaking my skin wide open. But I was determined to make those skin breaks dry and scab over so I stuck it out. For about 3 days the pain was extremely intense. I had to take a painkiller one day. I hate painkillers too. By the 4th day things were bearable and by about day 7 or 8 my skin breaks had all scabbed over and the scabs were starting to peel off day to day revealing new skin underneath. Whew! Now that's much better.

June 30th - My First Week Behind Me

Today the skin on my hands, mainly the palms, is burning hot, itching like crazy, swollen and just sore as hell. The blood vessels are wide open especially at night when the body's histamine levels are at their highest levels. I'm using a Calendula salve as an emollient to try and help heal my open skin splits and fissures.

I initially started using ts 20 years ago when I went to a doctor for a different issue. I mentioned this small patch of redness on a lower extremity, which seemed different from normal eczema and had been previously biopsied as psoriasis. I was just curious what she thought might make it go away. She was a doctor who had more of a natural approach to healing. She prescribed a super potent topical steroid, but didn't tell me it was a super potent steroid, or the correct way to use it. Recent research I've done on the net shows that this particular ts should never have been prescribed to me for my condition in the first place, and if prescribed a ts, it should have been one of the lessor potent corticosteroids. I didn't know the ointment was dangerous to use for longer than two weeks and on a follow up visit I complained that the patch would go away within a day or two but would keep coming back. She told me I needed to apply the ointment daily even when the rash isn't there to keep it away. I did that for a few weeks and then quit, probably because I just forgot about it. The rash came right back again so I would just treat it for a couple days and not use it for a couple days and so forth. This went on for about 17-18 years and then all of a sudden a rash that appeared to be eczema broke out in a small patch on the palm of my right hand. It was steroid induced eczema but I didn't know it at the time.

Well, I have never had eczema on the palms of my hands in my life! So, naturally I started applying the magic elixir on my hand every day or so. Gradually I had to apply it more often and by the end of the first year the rash was covering my whole palm and fingers and starting to show up on my other hand. I was also getting tiny spots of the same rash popping up in odd places like on my ear, side of my nose, one eyelid, chin, etc. I used the ts on those areas as well but in very small amounts compared to my hands.

By the end of two years my hands were a total mess. I got to the point where I was slathering the ts over both hands 2-3 times per day.   

May 21st 2013 - This Is Where I Start My Story

Well, today my hands are cracked, bleeding, itchy as hell, and swollen. Very inflamed. The last two years of applying topical steroids (ts) to my hands appear to be making things worse. Out of desperation I decide to take prednisone to see if I can get this eczema to ease up, or I'm going to have to go to the doctor, and I really distrust doctors. I had some left over prednisone from a neck surgery 3 years ago so I do a course over a 7 day period, and as I'm weaning myself down each day near the end, my steroid induced eczema starts getting worse after initially getting better I had hoped it would get better and the ts would control it from there but it was not to be. I made a doctors appointment the next day and when I went in he said I had first degree burns on my hands and told me to stop applying the ts (betamethasone ointment ) and apply Silver Sulfadiazine Cream USP 1%, a burn medication made for serious burns, for one week. I had to put it on my hands at night and wear gloves over it.

Right from the get go my hands start burning like crazy and feel very hot, like they are on fire. I thought this stuff was for burn victims! I faithfully did what he asked for 7 nights and by the last night I literally only got 1 hour sleep the pain was so intense. I spent most of the night with my hands in a large bowl of ice.

That was the last night before my follow-up visit. The next day I went in and he said my hands looked a little better (they didn't) and to continue applying the burn cream. I had already explained what I had just been through the previous night and was shocked he said to continue the treatment after what I had told him. I then said "NO WAY will I ever put this crap on my hands again"! He got a little miffed and told me " then you need to see a dermatologist today". I said "fine". I saw a dermatologist about 3 days later (the one he referred me to had very bad reviews on the net so I had to find a better one), and the derm said it looked like I was allergic to the Betamethasone ointment I had been using for so long. She gave me oral antibiotics and put me on a week long TS treatment of Fluocinonide 0.05% ointment and Mupirocin ointment 2%. After a week of the occlusive treatment with poor results, on my follow-up visit, I told my Derm that I felt the steroids were working (at night when I put them on with socks on my hands), but felt the moisturizer she gave me to use during the day was counteracting the positive effects of the steroids.

After some research I found out why. The ingredients in the moisturizer she gave me to use was inhibiting my skin's ability to breathe (the ingredient Dimethicone), and at the same time my skin was being irritated by other chemicals in it as well, including a couple types of alcohols and BHT. This is when I started losing faith in my fist Derm. I was immediately referred to another Derm, supposedly one of the top Derms around, but I think he was actually a clone.

So, before I even saw the next derm I had 6 weeks to research what the heck was wrong with me. That's when I discovered what was really going on! My body was addicted to topical steroids and there was only one cure, and that is to stop using any and all steroids forever. I discovered this information by stumbling across bloggers and websites where others are going through the same thing as myself and are doing their best to educate people about tsa/tsw. I was faced with a life changing decision. I had to quit using ts and suffer intense pain, itching, sleepless nights, loss of income, etc etc for up to possibly as long as 3 years.

After reading enough blogs about how others arrived to the same place as I did I knew I had no choice. The last day I used ts was June 12th 2013. I began the journey. Read on...

Topical Steroid Withdrawal

October 7th 2013

A little known side effect of prolonged topical steroid (TS) use called "topical steroid withdrawal" (TSW) comes after one's body becomes literally addicted to the drug. Once we reach the point where steroids no longer control the rash they create, we then basically have two choices. Strong oral steroids or injections, inviting some very serious health consequences and possibly a life long dependency on them, or simply quit using topical steroids completely. Actually we really have only one choice and that is to quit using them altogether so the body can heal and we can rid ourselves of this man made disease called "topical steroid addiction", or TSA for short. When you quit using ts the body reacts by breaking out even more as your blood vessels open wide looking for that next fix. Problem is by now the body's system is so damaged that we aren't producing the natural cortisol we normally would to control inflammation so the blood vessels stay open creating severe itching and nerve pain symptoms.

This recover is the journey through hell of which I speak. There is only one way to rid one's self of the hell that TS cause, and that is to go through a whole different kind of hell to recover from them. After you recover you will be steroid induced eczema free! Problem is, it can take anywhere from 6 months to several years. It seems the average is a year to two years. But, it's worth it!

You see, adult eczema is practically non existent. What doctors see today is steroid induced eczema and they usually mistakenly diagnose it as regular eczema because most doctors today are not old enough to have ever seen true eczema in an adult. Luckily for me I had childhood eczema and understand how eczema works it's course. Typically, childhood eczema goes away by your late teens and you only have small patches here and there throughout adult life, which normally don't bother people. But, if you are ever prescribed TS for anything, you end up getting steroid induced eczema which spreads over time until you are practically covered from head to toe eventually.

I'm currently 15 and a half weeks into topical steroid withdrawal (TSW) and just starting this blog now, so will have to do several posts to catch everyone up on what's happened with me up to this point. Here are some current pics taken of my hands just last night.

Follow My Journey Through Hell

October 7th 2013

I am not a doctor nor do I have anything to do with the medical field, so please do not taking anything I say as medical advice. My blog is about my experiences with topical steroids and topical steroid withdrawal and reflects my opinions only. Do not attempt what I have done without seeking proper medical advice.

Hi, my name is Dan and I have been unwittingly poisoned by numerous doctors with topical steroids over a span of  20 years. I have since learned that topical steroids (ts) should never be used longer than a two week period. Yet, somehow multiple doctors failed to tell me this information over a 20 year span of my life, all the while continuously renewing prescriptions for a super potent ts called betamethasone dipropionate ointment USP 0.05% right up until I finally diagnosed myself as being addicted to the drug in June 2013. I was able to figure it out due to information I found on the internet out of desperation. Mind you, when I say addicted, it may not be the type of addiction one might think. I'm talking about the body being addicted to topical steroids and the eventual hell one has to go through to stop the vicious cycle of ts use and it's damaging effects.

Topical steroid addiction is a little known hellish disease that the majority of the medical community so far has refused to accept even exists. There is such a huge amount of money involved it's no wonder they refuse to accept the truth. If dermatologists were to stop prescribing topical steroids they would likely be out of business. Or, perhaps they would have to resort to natural treatments for skin ailments. What a shame that would be. There probably isn't near as much money in that! I would think that most dermatologists know about topical steroid addiction (tsa), and they must be aware of what they are doing.How can they not know?

To summarize the process: Doctor prescribes a topical steroid (ts) to you or your baby for a rash. Any rash. TS seem to be the standard treatment for all skin problems. You start using it and the rash goes away. But, the rash comes right back so you keep on using the ts on it. Early on you develop what's called "topical steroid addiction" where your blood vessels get addicted to the steroids. The rash spreads, not only in the original spot you started treating, but in other areas on your body where you never used TS. The rash is now what's called topical steroid induced eczema. It looks just the same as normal eczema, but it's not real eczema. Because of this, most doctors mistake the rash for eczema. The rash starts spreading and continues to spread on the body over a period of months to years until no amount of TS will work any longer no matter what strength. At that point dermatologists will often then go to oral steroids or injections. These only mess you up more and severely compromise the immune system among other bad things. And, once you quit these, the rash rebounds even worse.

Betamethasone is a synthetic (man-made) corticosteroid that is used topically (on the skin). Betamethasone mimics the action of cortisol (hydrocortisone), the naturally-occurring steroid produced in the body by the adrenal glands. Corticosteroids have potent anti-inflammatory actions and also suppress the immune response. Corticosteroids have many effects on the body, but they most often are used for their potent anti-inflammatory effects, particularly in those conditions in which the immune system plays an important role. The FDA approved betamethasone in July 1983. Two of the ingredients in this drug are banned in both Canada and Europe. Yet the FDA says it safe for us here in the good ole USA! Those ingredients are a whole different story I will tell later.