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.

6 comments:

  1. Hey Dan I've looked through so much of your blog during my journey through tsw. First off let me thank you for providing the much needed guidance while going through this. If it wasn't for the information contained in your blog I would have thought several times that this condition is getting worse. Everyone is so unique that its truly hard to form any baselines. I have begun to use raw shea butter and something in this stuff heals the skin fast. Just wanted to share that with you.

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    1. Hi Jason, thank you so much. Hearing that makes it all worth it. I certainly agree about baselines being hard to form. This is a very unpredictable disease. Shea butter was a favorite of mine when I moisturized, and I loved the way it felt. It's one of the very few natural moisturizers that are safe to use on the skin, for most people, as long as it isn't used 24/7 continuously. That would disrupt the ability for the skin to function properly, and also possibly cause further damage to the skin barrier. This is just my opinion based on my own research and experience with using it. Best to you in your healing!

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    2. Dear Dan ,
      Thank you so much for sharing your experiences . It's giving us hope .
      To answer your question . My son started itching when he was 17 . He never had any skin issues before that , apart from pimples during puberty .Hes had allergic sniffles and sneezing though.
      A couple of his first cousins and a couple of second cousins have skin issues . Also a couple of his uncle's have allergic reactions to food that subsides when they take Allegra .
      My son's skin is better on most of his body . It is his face that is still breaking . An intense itch attacks him every night , which makes him scratch the skin that had dried on his face and break it again .A never ending vicious cycle . Parts of his chest and stomach that has hair is also not really healed . He is also getting tiny boils / pimples on his torso .
      How can one stop this night itch ?
      I fully sympathise with your experience with your doctor . In 9 years I have yet to find a doctor who will look beyond TS and oral steroids .

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    3. Hi Lisa, I wish I had a good answer. It does subside and should completely go away over time. How much time? Usually about a 3rd of the time one used TS based on my observations. The way I deal with symptoms like your son's is Dead Sea salt baths when appropriate, and I take Hydroxyzine (atarax) before bed. I imagine your doctors has said he has chronic eczema and/or allergies. That seems to be the go to answer. Maybe try a holistic doctor. I don't really know how anyone can help since it is something that simply takes time and abstinence away from steroids for the body to recover.

      I'm not a doctor and can't give advice or diagnose, but can share what I've been through and what I've learned from watching others go through tsw. Right now I'm near the end of a "7th month" flare in my second tsw, and my right palm is badly cracked and broken open. The way I am dealing with it is what I described above, dss baths and atarax for sleep. Nothing else works for me. Once my skin scabs over from a dss bath and a couple days time, it then becomes a matter of not scratching it open again. Very difficult during the initial rebound, and during flares, but after they subside it works for me and my skin begins to heal steadily again.

      I like most others, will get an itch attack in my sleep every night, and during the day if I nap, so I take enough atarax to keep me asleep at night. Not for the itching, since it doesn't seem to do shit for itching. It puts me into a deep sleep and I usually don't scratch like I would in lighter sleep. As for naps, I just stay as conscious of it as possible and the moment I begin to scratch I catch myself and get up. Sometimes will run cold water over my skin if the itching is intense. Now that I think about it, I used to do the same at night in my 1st few months of my 1st tsw rebound. I would jump out of bed at first sign of an itch attack and run for ice from the freezer in an effort to not scratch. It works but I found taking atarax a better way for me.

      And, sometimes one simply succumbs to the itching. When that happens I usually take another bath if I open my skin up too much. If I had a dss bath yesterday, and felt a need to bathe again today due to scratching my skin open, I would do a acv bath for some relief. Then if still badly open and sore the next day I would do another dss bath. I found that daily dss baths are fine for a few weeks in initial rebound if skin is badly broken, but after things settle down I needed to cut back to every other day, then every 3 days, and so forth. Eventually getting to maybe one bath a month with no showers either.

      I learned doing dss baths at the wrong times, or doing them too frequently can be counter productive. I also found that allowing the skin to stay free of all moisturizers makes for a very comfortable journey, as opposed to using moisturizers. The only times I really struggle are during the initial rebound, and during flares. The rest is a breeze.

      Check out the pictures I posted in my last post. The right thumb and forefinger was as bad as I have even seen. It became deformed for all practical purposes. Today they are 100% healed. That was from doing a dss every 2-3 days after a few months of not doing anything, and "time" of course. You see, I had done so many dss baths in my first year of tsw 4 years ago, that I had grown so sick of them, I refused to do any until I couldn't handle the pain anymore. I had grown used to bathing about once every month. I've always avoided taking baths most my life as I am an impatient person. Urge your son to do a blog to document his experience so others can benefit. It might be therapeutic for him. It was for me. This madness will never stop until enough people speak out.

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  2. Hey Dan I wanted to ask a few questions about my situation here. I started TSW January 1, 2017. The first few months I wasnt able to work at all I developed rashes on arms and legs and dairy aire. These were rashes conducive of steroid addiction bright red itched like hell and I scratched them until they bled. As they say I tried to peel my skin from its bones. I started looking through your blog at about this time and you mentioned moisturizers withdrawl so I began doing salt baths and found instant relief coupled with limited sunshine made my healing fast. Fast forward to March I had to return to work, I do general contracting remodel work. My skin seemed much stronger and other than small irritation things went well for about a month. I then ended up with another major flare on the same areas that healed the first time. Before, every time I began to get itchy I'd take a salt bath and find relief, but being back at work, its hard to manage the skin situation, so I began carrying a homemade salt spray with me. What I am truly trying to figure out here is what in dead sea salts stops the rash. I am pretty sure Im done with the tsw. I now have flexural exzema behind knees, elbows etc. The salt spray burns like crazy but after a few days the skin is strong enough that the burn is no where near as bad as the first day. I did steroid creams for more than twenty years, but thankfully never used strong prescription creams for long. I did take prednisone a few times and some cream triamin something. Before I began tsw I was using over the counter hydrocortizone but lathering it on lol. This really is some bullshit how damaged my skin barrier is from the roids. Anyways I have tried to research dead sea salt but was wondering if you could point me to some concrete information so I could kind of make sense of all of this. I never had exzema as a child and developed it at age 19 when I received a cortizone shot in my elbow three times. Weeks later after having the elbow drained and the three shots I developed a body rash that wouldnt go away and was diagnosed with exzema. Fast forward twenty some years and I still am trying to piece this puzzle together. Thanks for your time.

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    1. Hi Jason, interesting comments. I based my ideas of optimal management of my tsw symptoms partly on what I had learned about the Dead Sea salts from the https://www.sfsalt.com/ website, and another website I can't remember now. I did as much research on it as I could. There wasn't much info or studies at the time. But, people were going to the Dead Sea every year for good reason.

      Having a very basic understanding of how the skin functions is a must. I'm no expert but I would presume the skin benefits from the minerals in the Dead Sea salts. I had never thought of a spray like you are doing, and am glad to hear about it. I'm sure others can benefit from your experience! I'm a strong believer in the fact that "time" is the biggest factor in recovering from this, especially after my experience with taking oral prednisone in very late stage tsw and seeing what it did. However, how we manage our skin during tsw can make a huge difference in how much we suffer. I "know" I will recover fully in time. Thanks for sharing!

      Healing Properties of Dead Sea Salts
      The following list details some healing properties of the minerals found in Dead Sea Salt:
      Magnesium: Aids sleep and relaxation, promotes quick healing of skin tissue and provides the skin’s surface with anti-allergic elements, essential for cell metabolism.
      Bromide: Soothes skin, relaxes body muscles, and calms nerves.
      Iodine: Important for the correct functioning of the thyroid gland and aids in the body's metabolic exchanges.
      Sulfur: A natural disinfectant (constituent of certain vitamins). Known as a powerful detoxifying agent, as it works closely with the liver to rid the body of toxins.
      Potassium: Helps balance moisture in the skin and body, aiding in the reduction of water retention and in the nourishment of cells. Potassium also regulates the nervous system.
      Calcium: An essential mineral, known to strengthen bones and teeth. Also strengthens cell membranes and cleanses pores.
      Sodium: Relieves stiffness and muscle cramps. Sodium is also a powerful detoxifying agent, helping cells retain nourishment and expel waste.
      Zinc: When applied topically zinc is known to boost the immune system. Internally, it is a key factor in enzymatic regulation of cell proliferation.

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