Here I chart my TSW progress week by week since ceasing all topical and oral steroid use on November 15, 2016.
Week 1 – Body and forehead began flaring up. Began seeing a new traditional Chinese medicine (TCM) doctor who also does acupuncture. Commenced wheat-free diet. Began waking up between 1am-3am every night.
Week 2 – Full body flare became severe, heavy flaking. Itching was intense and bone-deep. Second week of seeing TCM doctor — seems he does not know about TSW and thinks it’s just regular eczema. Conducted a three-day bone-broth fast and cut out grains thereafter.
Week 3 – Flaring and itching still severe, but stabilizing. Began taking new TCM from a recommended practitioner who could tell I had a very inflamed gut just from looking at my tongue. Began taking TCM powder for skin and stomach.
Week 4 – Began seeing new acupuncturist. Commenced moisturizer withdrawal. Intense peeling of forehead and eye area.
Week 5 – Saw acupuncturist again who said my condition had improved. In addition to existing TCM, also began to take an additional powder for the liver and kidneys in case the detox load was too heavy and was causing the insomnia (still waking up between 1am-3am every night).
Week 6 – Right elbow suddenly became inflamed and swollen. Took non-steroidal anti-inflammatories and stuck on a patch. Commenced two-week family trip to Japan.
Weeks 7 & 8 – Relaxing time in Japan appeared to have helped with progress. Forehead flaking significantly improved as body redness reduced. Elbow mostly recovered.
Week 9 – Decided to try La Roche Lipikar Baume moisturizer upon return from Japan — big mistake — causing possible adverse reaction. Entire body flared up with an intense itch; scratching set back progress by at least two weeks. Sleep still poor, only get 2-5 hours a night. Also began feeling nerve pain in torso and arms. Began taking L-Glutamine for potential leaky gut and MSM for skin.
Week 10 – Still not recovered from Week 9 flare. Nerve pain slightly improved. Sleep as bad as ever and could be affecting recovery. Swollen gums near left molar on two separate occasions.
Weeks 11 to 14 – Went to hospital to have blood work done — did not show anything abnormal except for elevated eosinophil count. Saw functional doctor/naturopath and had comprehensive blood, urine and allergy (IgE/IgG) tests. Still sleeping very poorly with nerve pain, night sweats and stagnant recovery. Acupuncturist tried letting blood out of shoulder area with cupping to release heat — felt effective. Elephant skin developing on back of knees and elbows. Bought red light lamp for red light therapy. Bought mini-trampoline for rebounding exercise.
Week 15 – Results of naturopath blood and urine test show small intestinal bacterial overgrowth (SIBO) and insufficiency in vitamin B6. Began taking supplements to address these issues but began cutting out other random supplements. Began taking prescription sleeping tablets and slept better, but still waking up for hours without fail every night.
Week 16 – Completed three-month course of TCM and began seeing new TCM doctor who knows about TSW. New TCM is supposed to make me worse before I get better as all past steroid use needs to “get out” of my system. Stopped all other herbal supplements. Severe facial flare toward the end of the first week of new TCM.
Week 17 – Continued with new TCM and suffered worst facial flare to date after second week. Entire face and neck covered in thick skin, almost like scabs.
Week 18 – Saw functional doctor for allergy test results — strong IgG allergy to dairy and eggs, moderate IgG allergy to wheat, beef and cauliflower. Ordered and received Dr. Fukuya’s hyaluronic acid in the mail as well as Catrix 10 ointment. Began taking diatomaceous earth, Face and neck still in recovery as hands also flare. Stopped taking sleep medicine as still waking up anyway. Nerve pain and raw back of neck from sweating; ears weeping/oozing at night.
Week 19 – Massive flare to entire face, neck, jawline — covered again in thick, scabby skin; even collarbone and shoulders covered in rough, scaly skin.
Week 20 – More of the same — face peeling and flaking would reach a certain stage before flaring back up and covering the entire face, neck and jawline in thick skin. Began taking garlic baths with essential oils and also bentonite clay to try and kill what I believe could be serious staph colonization. Also started taking propolis and manuka honey and using a topical antibacterial ointment. Began taking Atarax for itch and sleep.
Week 21 – Again, more of the same. Face still peeling, but the skin growing back is not soft and flaky but rather in bigger, scalier pieces. However, the total thickness of the layer of skin appears to be thinner all around the face and neck with each round of shedding. Continuing with garlic/bentonite clay/essential oil baths every 2-3 days and bentonite clay masks periodically. Stopped taking Atarax after TCM doctor recommended against it.
Weeks 22 to 24 – More of the same. Face flaring and peeling week by week, seemingly getting a little better before getting worse again, but with nothing resembling a break in between. Full red sleeves by this stage, back of hands and wrists particularly red, with cracks on the fingers. Sleep still basically non-existent from around 1-2am to 6-7am every night. If I can, I still sleep in, otherwise I have to to find time during the day for naps when I get too exhausted.
Week 25 – Breakthrough at last. I purchased a tub of Safe Soda online after hearing many good things about it. I also bought a TCM “herbal” cream called E Cream from Ying Herbal Cream International, run by Dr. Li. The combination of the Safe Soda baths and E Cream produced immediate results. The redness and flaking reduced immediately, probably by more than 50% in that first week alone.
Week 26 – Quickly realised that the Safe Soda was not going to last long, so ordered more tubs from a reseller online. Improvements continued with daily baths, to the point where I was finally able to leave the house without covering up my face. Just a cap to cover up the drier parts of my forehead and long sleeves to cover the red sleeves, which have reduced significantly in colour but still noticeable at the wrist areas. Hands and forearms remain itchy and problematic.
Weeks 27-28 – Improvement continuing but slowed through Safe Soda baths and E Cream. Still flaking on the body (though down probably 70% from peak), the little oozing I occasionally got on my ears were gone completely, and my face looked just about normal except with a bit of dried skin when I don’t moisturise for too long. Wrist, forearms and fingers still not great.
Week 29 – Devastating news with the shocking discovery that E Cream contained steroids. Ceased immediate use and hoped for the best. There was a rebound, but not quite as bad as I expected. This is possible because I was using it along with Dr Fukuya’s hyaluronic acid, which is supposed to reduce the skin atrophy caused by steroids. Either way, it was a very sad and demoralising week. The lesson learned: Anything cream that is miraculously effective probably has steroids in it.
Week 30 – Decided to get proactive again to recover from E Cream. Safe Soda baths seem to be either still working or doing enough to maintain my skin at its current rate (redness down 90% except for shoulders, hands, wrists and forearms, flaking down 70%, no oozing). Elephant skin prevalent in areas with skin folds (knees, elbows), and skin atrophy (a lot of lines and wrinkly like an older person) in certain areas. Luckily, only a little bit of lines on the forehead and the rest of face is generally fine. Went to see a new TCM doctor at a major hospital recommended by a friend. This doctor provides 100% herbal topical solutions and ointments — this time I was sure there were no steroids. I had to rub this yellowish solution on my skin once or twice a day, and then apply a purplish ointment over it 2-5 times a day. I liked it as it generally kept the skin moisturised. I applied moisturiser on top anyway.
Week 31 – Continuing with this new routine, which seems to work well. I’d wake up extremely stiff and uncomfortable in my own skin, and would have to use a body brush to brush off some dead flakes before sinking into a Safe Soda bath. Afterward, I would use the TCM solution and ointment, before slathering on some thick moisturiser (the days of moisturiser withdrawal are long in the rearview mirror). It would be a little uncomfortable for a while because I was so oiled up, but it was preferable to the uncomfortable tightness and dryness. I would be mostly functional for the entire day and would apply more purple ointment for itch or dryness.
Weeks 32 to 33 – Saw a psychiatrist this week for sleep, which remained by biggest problem. The doctor prescribed Ativan for relaxation and a Stilnox every night for sleep, which turned out to be a huge breakthrough and is finally starting to turn my sleep patterns around. I’d still wake up once or twice a night, but generally I would be able to fall back asleep and get a solid 6-8 hours every night. And when you get enough sleep, your body recovers better. Still going ahead with Safe Soda baths and the TCM solution and ointment. My problem areas (forehead, forearms, wrists, fingers, shoulders) after stopping E Cream are finally starting to recover.
Weeks 34 to 35 – Improvement has continued. I went back to taking the oral TCM prescribed by my previous doctor as he seems to understand what TSW is all about in terms of expelling the years of built-up toxins and rebalancing the immune system, compared to regular TCM dermatologists who treat it like regular eczema. However, I’ve accumulated enough of the TCM solution and ointment from the hospital to last me at least another month, so I am combining the two. My face is basically normal now with almost no dryness or flaking, just a few wrinkles on the forehead. My skin shedding is down to about 10% of what it once was. No oozing. Itching down at least 60%-70%. The skin atrophy will take time to recover, but the only places where I have a bit of visible redness now are on the back of the wrists and my shoulders. Everywhere else is essentially smooth. I still wake up with a bit of dryness and tightness, but it’s nowhere near what it used to be (discomfort down at least 80%). I don’t need baths every day now and try to keep it to once every 2 or 3 days, with quick cold/lukewarm showers or just rub downs with a wet towel on other days. As long as I apply the solution, ointment and moisturiser twice a day I’m almost fully functional. I’m sleeping 8 hours a night with Stilnox, and most nights sleeping through. The only difference is I still get some mild tightness in the shoulders for some exercises (like jumping jacks) and my skin doesn’t love sweat (gets a little itchy and uncomfortable, but doesn’t break out in rash). After nearly 8 months, I feel like I am finally getting there! It’s slow and it’s agonising, but it’s starting to look like it’s worth it.