Friday, October 20, 2017

Topical Steroid Withdrawal - A Message From A fellow Sufferer

The following story is a common one. Below is a copy & paste from a friend (with permission) whom I've communicated with via private email and on my blog for 2-3 years. If you can relate to this story you will understand the dangers of misuse/overuse of topical steroids and the consequences, as well as the consequences of doing oral steroids in late withdrawal. I know for me at least, based on my own use of topical steroids, and based on my experiences with doctors and Dermatologists since I began TSW, that the steroids have caused a massive autoimmune problem in my body, which doctors either don't understand, or simply don't care to understand. Hopefully one day they, the NEA, and others, will finally acknowledge the true problem and begin to look (embrace) for a cure for it instead of more drugs to treat the symptoms, rather than the cause. Which, by the way, they always attribute to atopic dermatitis, chronic eczema, psoriasis, etc. But never damage to the immune system.

"I think in my own situation, I had small patches of eczema off and on
for years. I had very itchy feet and hands when I was a kid, but
everything was called an allergy back then. No one had ever heard of an
autoimmune disease. So, at best, my condition was pretty much
undiagnosable and certainly untreatable. About 17 years or so ago, I had
a weird patch on one palm, was given a tiny tube of steroidal cream (not
precisely sure it had steroids in it), but it went away.

About 8 years ago, I got a patch on one elbow, and my palms were getting
little patches. I attributed it all to the stuff that comes with aging.
About 3 years ago, I noticed strange little pock marks on a couple of
finger tips that persisted. Throughout my life (maybe every 5-6 years)
I’d have outbreaks on my hands and feet that itched pathologically. When
cool weather came, it would mostly clear up.

Now I realize these were little mini flares. A portent. I went to a
dermatologist 5 years ago because I was having a particularly little
kind of flare. She prescribed a big tube of steroidal cream and said to
use it all up. I obeyed.

I rebounded from it when I used it up, but not badly. Five years ago I
went to another dermatologist, who, of course gave me more and stronger
steroid cream. It took me a while to connect steroids with flares and
rebounds. This is where I think the trouble started. 3 years ago he gave
me an oral round of steroids, and a few months later, almost overnight,
my body went haywire. My hands (I was 8 months into withdrawal) my hands
went crazy bad. Like the pictures you saw.

I’m in a flare right now. My left eye near the inner tear duct is dry
and crusty. Some in my nose. I have a bit in my bottom, some on my
scalp, as well as the usual hands, fingers, feet, and toes. But nothing
like it was. I also have the arthritis that will settle where I’ve had
old injuries. Sometimes it will attack just a wrist, or a thumb, or a
knee. The pain is very deep and sharp, but I take Aleve, and it will go
away. I’m lucky in that sense. I hate meds.

I think steroids set my body on fire and did create a massive autoimmune
reaction. I’m still having it, even though it is somewhat controlled
with Otezla. I encourage you to consider a biologic."

Sunday, August 6, 2017

What I've Learned From 4 Years Of Topical Steroid Withdrawal

Wow! That's a big title to live up to! Where do I start? I guess I will start with some of the most important things I've learned after experiencing this for 4 long years.

1) Not moisturizing during topical steroid withdrawal is the most effective way to go. As compared to moisturizing, I'd make a rough estimate that not moisturizing makes the recovery 100 times easier. That means 100 times less suffering and itching. Don't believe me? Look at those who have blogs that don't moisturize, and compare how they feel to those who do moisturize. Significant difference.

2) Dead Sea baths. I cannot express enough how these baths are the most effective way for managing most tsw symptoms. They immediately alleviate severe itching in the areas where one used the least amount of ts, and also tend to heal those areas for good in a matter of a few weeks. As for the areas of your skin that received the brunt of the ts, these baths have the same effects, just not as noticeable due to how severe the symptoms are. But, even though the baths don't heal those really bad areas in a few weeks, they do help immensely in early tsw rebound.

3) Diets have practically zero effect for topical steroid withdrawal. TSW is a powerful rebound reaction in the body, and simply too powerful for something as insignificant as a better diet to have any effects on the process of healing.

4) TIME! Time is key. The body needs plenty of time to heal itself from ts damage caused by overuse, or improper use of ts. For heavy users expect this process to take 1/3 the time you used for the body to resolve itself and heal fully. People who used lower potency ts for months, or say a year or so, often heal much faster. And, in many cases, in just months instead of years.

5) Finding an open minded doctor for support in tsw is a must. Look for a holistic doctor.

6) Never take a strong course of oral steroids like Prednisone in late stage tsw. It will nearly undo your entire healing and cause you to have to start over. It can cause one to rebound as bad as the rebound was when one first stopped using ts.

7) Read, read, read. Educate yourself on how the skin functions. This is extremely important. Once you do that you will understand why moisturizing is so damaging to your skin during the tsw process.

8) Read everything you can find on Dr. Rapaport's red skin syndrome website and blog. You can find all this info in links I have provided on the right hand side of my blog.

9) Understand that no one individual's opinions on the subject of tsa/tsw/rss are 100% right. That is why you must educate yourself! Read everyone's opinions you can, all research, etc., and make your own opinions derived from what YOU learn. Example: I feel Dr. Rapaport is one of the best sources of information on tsa/rss/tsw out of anyone other than myself, and unlike myself, he has the most experience in helping thousands of people heal from tsa/rss for well over 35 years. However, I highly doubt he has ever experienced tsw himself. That surely must limit his knowledge in understanding how the various symptoms feel, how various things like DSS baths effect the skin, how moisturizing affects the skin, etc. I would imagine if he hasn't experienced tsa/tsw himself, he can only draw on what he has witnessed in helping these patients. If he has never used my DSS bath method with his patients, then I don't see how he can possibly make the statement that they don't have any effects. I have personally offered my experience to him and he was not at all open to it what-so-ever. I find that disturbing, but again, no one is perfect. If it weren't for his video explaining how childhood eczema typically burns itself out when one reaches adulthood, and my own experience in that very thing some 40+ years ago, I may not have had the information I needed to understand what was happening to me. So, he is my hero despite my disagreements with his methods of managing tsw symptoms. And managing the symptoms effectively can mean the difference between wanting to end your life and not wanting to, believe me.

With that all said, Dr. Rapaport has done more in exposing the medical establishment's lies than everyone else combined. He has stuck his neck out and put his reputation on the line for decades and he deserves nothing but respect. He has confirmed what we all suspected. That using topical steroids eventually leads to using stronger and stronger ones, and they are causing what most all doctors call eczema, which most times is actually nothing more steroid induced rash that looks just like eczema. The cause is the ts just like he says.

Add to that, we have been brainwashed since birth by corporate interests to use moisturizers to have smooth skin, protect the skin, etc etc etc etc etc etc. This is all pure unadulterated bullshit. Women need to wake up and realize this. How many men do you know that moisturize their skin? Not many. Although, constant advertising is so effective there are many younger men using moisturizers now. I find this rather amusing, even though it's sickening to see. You have been preyed upon with fear mongering and that is hard to overcome. This is why I especially urge YOU to read how the skin functions. Once you do that you will understand everything I say about how to mange your tsw symptoms the most effect ways and why. It would take you a whopping 5 minutes of your time to do this. After 4 years I am amazed at how many people don't take a little time to read this most important info. We all tend to look for answers in the wrong places.

Dr. Fukaya's blog is also a must read for anyone who wants to learn from his experiences in treating people with tsa/rss/tsw over many years. He has also done tons of research. Again, he is mostly correct in all his opinions and research, but does have a couple of beliefs that I feel are simply incorrect. One such belief being people can safely use ts in very limited amounts for a very short period of time in late stage tsw. He is simply wrong about that. I know I tried with both ts and oral. To be fair, I may have misunderstood. Lots of water under this bridge in 4 years, so take what I say with skepticism and do the research. 

I could go on but am tiring so will close by talking a little about my current condition and what improvements/setbacks I've had recently. See my last post for lots of pictures. Since that post I have recently experienced the typical 7th month flare in my second tsw. It has sucked, but my fingers and thumbs are 100% healed! My heels are nearly healed! This is amazing considering how bad they were a couple months ago (see pictures on previous post). However, the flare has caused my right palm to open up again and it got pretty bad. I got a very itchy red scrotum as well, something I didn't have in my first tsw. But, every time I take a dss bath this constant itching on my scrotum goes away for a few days each time. And, the redness disappears as well. I did a dss bath yesterday after waiting about 3-4 days and have much relief today on all symptoms. Again, I cannot stress enough the value of doing dss baths while in tsw.

One last thing. I find it rather sickening and highly immoral my doctor refuses to read the info on tsa/rss/tsw I give to her. After 4 years my she has taken the position that I must have serious allergies and have chronic eczema because I surely would have healed by now. She refuses to read Dr. Rapaport's website, or even talk with him on the phone about my condition. says she doesn't have the time. Four freaking years and couldn't find the time? I paid Dr. Rap to talk to her and he had a hell of a time getting her on the phone, but when he finally did, she said she "was slammed and didn't have time". I'd really like to know how a PA (physicians assistant) thinks they know more than a professor at UCLA, who is also an MD, and who has treated over 4,000 patients over a 40 year period. Yet, through my extremely brief conversations with her I can clearly see she doesn't want to know about tsa/rss/tsw, and is only interested in not making waves for the clinic she works for. They apparently don't want to know the truth so she has to tow the line.

I had talked to the director of this clinic and expressed my feelings about how I felt I wasn't getting very good quality healthcare from my doctor because she is so heavily loaded with way too many back to back patient appointments every time I see her. I asked the director of this clinic if she would read Dr. Rapaport's "White Paper" and she said she would. I then asked if she would have my doctor read it and she said "what if she doesn't agree with it?" Also, during the course of the conversation she said "keep in mind we are a business too!" Just sickening. Again, what happened to the Hippocratic Oath? Has greed and desire to "fit in" taken over actual caring?

Why is it insurance companies and the government are involved in my relationship between myself and my doctor? Why isn't my doctor working for me since it is I who actually pays their salary? I'll tell you why. It's because of all you snowflake retards out there who think government knows what's best for you. How is that doing for you so far? I long for the days when I could go to a doctor and have his full attention for a good hour, all for $40. No insurance or government involvement. Now, my co-payment alone is almost that much, and a typical office visit is billed to my insurance to the tune of $175- $500, of which I pay most of it via a co-payments, deductibles, insurance premiums, and 10% of the cost. And that is for 20 minutes with a doctor that is so rushed that she/he can't give even the resemblance of decent healthcare.

Mostly the time is spent with the doctor watching them typing notes on a computer. Information required by government and insurance companies. And, information designed to protect themselves from lawsuits from the patient! Like it's easy to successfully sue a doctor right? I can't help but laugh while I write this. You'd have to lose your life or have the wrong limb cut off in surgery by mistake in order for most attorneys to even consider taking on a medical malpractice lawsuit. So why the fear among doctors? I don't get it. Must be pressure from their clinic masters. Zero successful lawsuits means more to the bottom line right? Too bad because I'd love not having to pay my doctor to do this and would much rather they give their full attention to what I am there for during that brief moment in time.

I have been mis-diagnosed nearly every time I've been to a doctor in the past 25 years. And so have nearly every person I know. I attribute that to the involvement of both government and the cozy relationships health insurance companies have with said government. I'm not a doctor basher, just a bad doctor basher. If you made it this far I congratulate you. Now, please go to the right hand side of this blog and click on some of the various links provided. Especially the one on how the skin functions, as this is the most important information for tsw's to understand.

UPDATE: I forgot to mention that this journey is all about managing tsw symptoms, and the most effective tool in my toolbox is dss baths. Even more so than sunshine. It took me years to figure that out. I have found that no matter how much sun I get I see little change, although I know it definitely helps the skin. When I do DSS baths, I see immediate improvement nearly every time. People don't travel from all over the world to the Dead Sea for the sunshine! They go for the water which is jammed packed full of minerals one simply can't find anywhere else. Duplicating this process at home is the best thing I've done in managing my symptoms.

UPDATE AGAIN: I have discovered that applying organic Bragg's apple cider vinegar to affected areas works better than Tea Tree oil in some cases. It seems acv works well, and has no side effects like the tto can cause. I've struggled with the question of why I haven't figured this out a long time ago and I think the reason is it just never crossed my mind that acv could have the similar benefits I was getting with the tto. I knew it helps balance the pH on the skin, but had no idea at how well it takes away inflammation and speeds the scabbing process up on small bothersome skin wounds until I tried it. Also works well with weeping wounds. When I say wounds, I am referring tsw symptoms of the skin. I'd love to hear from anyone else who has tried using acv in this way!

Thursday, June 15, 2017

Oral Steroids In Late Stage Topical Steroid Withdrawal

Warning! Look at the pictures below. This experience needs to be shared, so those who decide to do, or are already in, "topical steroid withdrawal", understand what can happen if they choose to do what I did.

I did a course of oral Prednisone after being in TSW for 3 1/2 years. Doing a course of oral Prednisone in year 3 of my topical steroid withdrawal undid nearly 3 1/2 years of healing! I would have never believed it possible if I hadn't experienced it myself. I had spoken to another person who tried Prednisone with no good results, but they didn't have the same setback as I did. I can only conclude that my major setback may be attributed to me doing a much stronger and longer course than that person. I'm pretty sure Dr. Rap has posted about this danger on his site, but didn't come across his info until it was too late.

Over the past couple years, up until last fall, my skin has been near normal for the most part. Still had residual spots in places that would come and go, itching only once or twice a day when sleeping. But, due to working way too much with my hands over the summer, spilling gasoline, heating oil, and other nasty stuff on them etc., by Fall they took a turn for the worse. I had also experienced an enormous amount of stress due to a personal problem about that same time period. Since my problem came from topical steroids, and I was in very late stage of healing, I felt that doing a short course of oral steroids would be worth trying. I didn't think it would do any harm. 

So, I did a course of Prednisone to try to knock this shit out of my system for good. I figured the worst that would happen would be a temporary relief followed by a reversion to the way my skin was before the course. Well, I got the relief I wanted, clear skin for a couple weeks. However, when I tapered off the Prednisone my skin not only reverted back to the way it was before taking it, but it didn't stop there. It kept going. And going. And going. My skin continued to deteriorate way beyond where it was, and within a few weeks my skin was having the same symptoms as it did when I first began TSW nearly 4 years ago. Symptoms that had cleared in the first 4 months of my TSW, like huge rashes all over the body in odd places, intense itching, sleepless nights, etc. But the worst one was the skin on my palms thinned so badly from the Prednisone that I experienced level 10 pain 24/7 for 4 straight months this winter. The only symptom that didn't come back was the very deep bone itching I had experienced my first time. I was so grateful for that because that was worse than any pain I can imagine.

This time around I had rashes break out in areas that never have before. The most problematic one being on both heels. By the time my hands healed up, my heels started cracking open and I found myself unable to stand or walk without pain. Geez! And I thought the hands was the worst place to get TSW symptoms! Uh uh. The heels are just as bad. The two parts of our bodies we put pressure on numerous times a day, the hands and the feet. This shit is manageable anywhere else on my body for me. But not the hands and feet!

Fast forward to today and my skin is about 80% better than a couple months ago, the pain in my hands finally completely disappeared a couple weeks ago, and my heels are healed enough where they aren't cracked open and give me little problem other than itching around my ankles. They don't appear to have healed as much as my hands in these pictures, but no pain, itching almost gone, and on their way to healing up.

I truly feel that the healing is mostly from "time". However, as I've said many times, do we want to spend that "time" in serious pain, or in relative comfort? For some, like myself who has used a super potent topical steroid in excess for years, complete healing via TSW can take up to 7 years. But, I've seen many people heal in a few months to a year or two. These are usually people who used less potent TS, and not as much, or as long. Of course there are many other variables.

Since my last post I have learned much. Way too much to relate in one post. I'll cover some of it in my next post. I just wanted to get this warning out to anyone who is considering doing what I did, as I am sure most do consider it. See pictures below (especially see right thumb and forefinger - compare top pics dated 2/21/17 to bottom pics dated 6/15/17).

Why so much healing in just a month and a half? Mainly "time" I think. I probably prolonged some pain by not doing DSS baths sooner than I did. I got so damn sick of doing Dead Sea salt baths that first year that I didn't start actively managing my symptoms until early May. What a difference dss baths and sun exposure, combined with "time" makes! I should have started back on the baths in January ugh! I did try a couple different moisturizers on & off on both the feet and the thumbs and forefingers where the skin was extremely layered and built up. However, once again I found that all they do is keep my skin moist, which causes pain. And, they also cause me a hell of a lot of itching that I can certainly do without.

NOTE: I accidentally deleted all past images on my blog a couple months ago. I still have them on my desktop files, so if anyone feels a need to see old images to match old posts, just let me know and I'll try and dig them up. I'll try not to delete new images I post going forward.

UPDATE: I took a couple of photos of my thumb and forefinger to show how much improvement to date. See dates on left side of pictures. The two new pictures are at the bottom dated 7/2/17. Feet, hands, arms, are all drastically improved as well but just don't feel like taking a full set of pictures today. Will update those at a later date. Once I got everything straightened out I stopped doing dss baths and am only getting sun exposure daily. No moisturizers or anything else. I did take one quick shower, but no soap. Haven't touched a bar of soap in 3 years now. Don't intend to for at least two full years AFTER I'm 100% healed.


2/21/17









3/11/17











 4/29/17




























5/1/17








5/10/17









6/15/17



















7/2/17