Scientific articles & TSW related videos

Here is a list with links to some of the best scientific literature and videos I have found on TSW.

It’s good to have some evidence when talking to doctors and it’s also a wise to know how to communicate in their language.

This may also be helpful to convince skeptical friends or family members, if you have any.

(Personally the only people I’ve had a hard time selling the idea that I’m suffering from TSW have been doctors and derms.)

ITSAN Overview on TSA/TSW/RSS

This was the video that made me realize what I was dealing with. Short video that pretty much gives you the broad strokes of this condition.

Current hypothesis in atopic dermatitis and red skin syndrome

This one is a little dry but does a great job of outlining the current hypothesis behind what causes rss and why. It’s made by a guy that has a Ph.D in immunology of allergies at McGill University. He also has a gofundme which could use some support.

Topical steroid addiction in atopic dermatitis

This paper is one of the most complete medical papers I have found on TSW/RSS. There are also a lot of great links in the reference section.

White Paper on Steroid Addiction by Dr. Marvin Rapaport

Dr. Rapaport has been one of, if not the, biggest dermatological proponents of RSS. He has a lot of great blog posts on his website relating to TSW/RSS.

Improvement of Atopic Dermatitis After Discontinuation of Topical Corticosteroid Treatment

This one is behind a pay wall but there is a  brief overview of the study and a preview of the first few pages of paper.

DermNet New Zealand

A great resource for all things skin related. Here is their write up on TSW.

A prospective study of atopic dermatitis managed without topical corticosteroids for a 6-month period

This study included over 350 people and it showed that allowing atopic dermatitis to heal on it’s own over a six month period actually had better results than using TCS over the same amount of time.

Histological and Immunohistological Findings Using Anti-Cortisol Antibody in Atopic Dermatitis with Topical Steroid Addiction

This is also a great paper that has a lot of pictures of skin samples that highlight, pretty clearly, what a weakened skin barrier looks like.

BONUS

Every doctor appointment ever

This video pretty much sums up every consult I’ve had with dermatologists over the 2 year period that I’ve been battling this condition. Maybe you can avoid this meeting by showing your doctor some of these resources.

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Month 24 – December

 

This month I made a pretty great discovery. I started using jojoba oil and it has really alleviated a good portion of the cracks on my hands and wrists. My brother also got me some products from Living Libations: BeDew Dab and Best Skin Ever™ – Frankincense. Pretty bold claim but it seems to be helping quite a bit on my face. I also emailed the company and they recommended I stop using almond oil and witch hazel so I have omitted those from the beeswax balm I usually use and replaced them with just jojoba oil.

Another big thing I am about to try is the keto diet. My girlfriend and I have been researching all the potential health benefits from it and we have decided that it’s worth trying to see if it helps with my skin since it’s supposed to be an anti-inflammatory diet. I also have a history of diabetes in my family as well as dementia so those are also possibly remedied by the keto diet. Since beginning TSW I have noticed a difference in how strong my skin is related to how clean I am keeping my diet. It seems that the more vegetables and meat I eat, the less my symptoms bother me. When I have a lot of sugar I notice I am much itchier and the days following I have a lot more dead, flaking skin. I’m sure I’ve mentioned that several times over the course of the last 2 years but it bears repeating.

I’ve also taken up jumping rope since it’s reportedly good for the lymphatic system as well as a great form of cardio. I also have scrawny chicken legs so I’m hoping I get some sext calves out of the deal too.

Month 23 – November

 

Not much change from last month. Still struggling to keep my hands and face intact, there’s also some pretty intense itching that happens around my ankles and feet from time to time. The skin on my hands looks like it’s thickening up and my face only has couple spots that are still oozing but I’m still dealing with pretty much full body redness. It’s a very slow process that makes me doubt whether or not this will ever go away since the progress I have made is somewhat minimal, physically. Mentally I feel a lot more clear headed than I can ever remember feeling. Part of that might be from cleaning my diet up, but I suspect a large portion of it is because I’m not rubbing stress hormone on my body twice a day.

It’s weird because when I talk to people about what I’m going through, they have been very understanding and think my diagnosis is the correct one. The only people I have gotten negative feedback from are dermatologists and doctors. They seem to think that this is all in my head and that I just have really bad eczema, despite the fact that I incorrectly used TCS for a very long time and have had over 25 different symptoms related to overuse of TCS and adrenal insufficiency that began shortly after cessation of use. I know that prescription topical steroids are a billion dollar industry but I had more faith in medical officials to do right by their patients than what I have received. I’m not sure if it’s ignorance or greed or a combination of the two but it’s been a real eye opening experience to the dangers of what seemed like benign pharmaceuticals.

How to make your own beeswax moisturizer

 

 

I’ve tried pretty much every moisturizer that’s on the market: aquaphor, cetaphil, cera ve, coconut oil. They would all help for awhile but eventually my hands would start to ooze a lot and just be awful to deal with. I’ve attempted moisturizer withdrawal several times but that has always rendered my hands too sore to deal with anything.

This beeswax moisturizer is the only moisturizer that I have found that my skin can actually tolerate for any extended period of time. It’s also quite cost effective.

In a large pot place flat wire steamer rack into pot, boil enough water to cover an inch up from the bottom of a large jar. Heat beeswax, jojoba oil in the large jar until wax is melted in. Add vitamin e and lavender, stir together. Pour into smaller containers and refrigerate until solid.

Month 22 – October

The healing continues. Or at least, my symptoms don’t seem to be getting much worse. I’ve been sticking with the beeswax as a moisturizer along with Vitamin E and almond oil. Still get itch fits, but the severity of them has reduced immeasurably.

Something else that I’ve been trying this month is the Wim Hof breathing method. If you’re unfamiliar with Wim Hof, he holds 20+ world records for cold immersion, running a marathon in the desert without any water and hiking Mount Kilimanjaro in shorts. He has also been the subject of scientific experiments where he was shown to be able to modulate his own immune systems through breath work and he believes that this is a teachable skill. It’s all pretty unbelievable but it has me very interested in what he says and a lot of the science behind looks to be legitimate, at least to me so far.

His intro breathing method is pretty simple; just do 3 rounds of 30 deep breaths and on the last exhalation of each set, hold your exhale for as long possible. I’ve been trying to do this whenever I get an itch attack and so far I think it has been very beneficial, if only for the fact that it distracts me until the urge to scratch has subsided. More than that though, I find when I attempt this I get chills all over my body but especially in my arms and my lower legs (which also happen to be the places where my eczema is the most flared). Afterwards I’m left in a much more relaxed state. It will be interesting to see if there are any other long term benefits that can help me get this condition under control.

Month 21 – Septemeber

 

This month was pretty good. I’ve been using Vitamin E and almond oil for moisturizing and my skin seems to be tolerating it really well. I’m finding that I rely heavily on my daily epsom salt baths for the thinner parts of my skin to dry out and heal. I’ve also been taking circumin regularly as well as probiotics daily. Not sure how much of an effect those are having but they don’t seem to be hurting and I strongly suspect that my gut biome has been messed up from years of unhealthy eating and there’s a growing body of research to suggest that skin health is directly connected to gut health. Either way, I’m just trying to not rock the boat at this point, continue doing what appears to be working and avoid all of my triggers as much as possible. My skin seems to be getting stronger, it’s still very flaky but the oozing has diminished considerably.

I’ve also decided against going on prednisone. It seems too risky at this point in my recovery to supplement my body with cortisone, I strongly believe that it will only lead to a rebound flare when my course of prednisone is finished and then the dermatologist will most likely move on to prescribing me some kind of immunosuppressant that will weaken my immune system unnecessarily. I’m just not ready for that. If my skin hasn’t improved in 5 years maybe I will go down that rabbit hole but until then I think I can manage my symptoms and try to find some way to make money that doesn’t exacerbate my condition.

Month 20 – August

This month has been up and down. I’ve been battling a flare for pretty much the whole month. I can’t really work landscaping anymore for a few reasons, I can’t commit to a full time schedule, the nature of the job exposes me to way too many allergens and irritants and my boss’ sympathy for my situation is wearing thin.

I also had a dermatologist appointment today, my 4th one since I started TSW and most likely my last consultation with one. He was pretty understanding and agreed with me about the side effects of TCS and that I overused them. However, he still recommended that I take oral prednisone to get my skin under control. I don’t doubt that prednisone would clear up my skin but I really believe that this will end up being a band aid treatment and once the round of meds are done I’ll have a rebound flare and will having further delayed my healing. Honestly, when it comes to eczema treatments, dermatology is still very much in the dark ages and they seem to think that corticosteroids are the only treatment.

My current condition sucks to be sure, but I have more or less learned to manage it and I really couldn’t bear starting this ordeal over from the start just to get a few weeks of temporary relief. Some people will call me brave for this decision and others, I’m sure, will call me stupid for disregarding doctors orders. What I really am is scared. I’m scared that my current condition is going to be the status quo for the rest of my life and I’m scared of taking medication that will leave me off in a worse place than I am now. Both paths are terrifying and rife with uncertainty.