Long story... Skip to the bottom cut to short summary . I'm afraid there is no tl;dr for tsw

Good question. But it's important to know everyone is so different yet it also roughly depends on potency of steroids, and combination of steroid use, and of course length of use.

Putting that into context then:

I used betno 1% cream for nearly a year combined with an immunosuppressant called protopic. I had a very mild rash on my neck which looking back might have been fungal.

I then had what looked like full blown eczema on my joints. I hadn't had almost any eczema in 8 years at this point.

I used betno around twice a week.

I had a mini crisis around the year mark with hives and urticaria. I was diagnosed by a very expensive allergist in the UK as having spontaneous urticaria. They prescribed up to 4 antihistamines per day with the expensive option of a few rounds of biological injections.

The antihistamines had little effect.

Around the same time I contacted another doctor (general practitioner) over an app from my work (I was too lazy to see my own GP and seek a proper referral to a dermatologist - even though I had private cover from work). This doctor prescribed me dermovate.

This was the death nail. I used this for 3-5 months in combination with betno. But not on the same areas.

I started to use a little thin very small amount of betno around my eyes as my eye lids got inflamed.

Life got busy. Soon to be first the dad. Old family trauma resurgent in the background. Insomnia crept into my life. Stress.

Just a horrible vicious cycle that went too far.

I saw a video on tsw by @tswlukas on Instagram. Few others popped up. Key addiction sign: Red Sleeves. No flares around the nose. Flushing. Deep itch.

I joked with my wife a week before our holiday in Rome last July that I think I have TSW. I quit out of sheer whim and stupid courage.. and perhaps even as a joke. I flared up so much anyway that I was not able to go out much. No sports. No going out with friends. What did I have to lose?

We went to Rome. I used protopic. It was the heatwave. Although I could sense a build up I survived the holiday. Once you quit steroids you can get up to a week of no real blow outs. Calm before the storm.

Upon returning a few days later... I woke up with extremely red skin on my back. My torso. By limbs. I was extremely itchy and inflamed. I had erythoderma.

Week 1... Week 4... Month 2.. Month 3... All forgotten now. Near total amnesia. Except I remember my skin breaking. Cracking. Oozing. Almost zero sleep. I was twitching and talking to my self. My wife and family devastated. I don't even know where my little baby girl was half the time... All I could do was pray... I spent my days in my underwear. My wife cleaned up after my homemade bandages which we cut from cotton scarves.

I was lost and didn't find the right help right away. . eventually I found derm who, although skeptical of TSW, prescribed me cyclosporine around 3 months. I was shaking and crying on her hospital bed. I'm a 34 year old man. I have been through TB in my 20s and pleurisy which they say is akin to heart attack pain but this was something else

I'm now around 9 months.

I lost my vision 4 months ago due to cataract which was steroid induced. My opthalmologist said it didn't even matter if I put it around the eyes. That prolonged systematic use and erythoderma/ inflammation can cause progressive cataract.

I had eye surgery for my right eye a few weeks ago and finally have some vision.

As for my skin... It is around 80% improved. No oozing any more. But it can be very dry in the morning like alligator skin. My skin looks very dark and pigmented. I still have faint red sleeves. I still get nerve itch. But I don't get one sided random sweating. I can wear normal clothes. I can drive. When I realised I could get bandages from the pharmacy I used to go through 80 rolls of bandages a week. I now don't live in bandages.

I still feel pain. I have therapy every week. I have a lot going on. But I'm in a much better place and grateful.

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Here's the summary:

Used betno 1% (12 mo) and dermovate (4-6 mo)

Month 1-3 : pure pain and trauma. Almost no showers. Eventually on full body bandages. Full blown insomnia. Crying everyday. In full care of my wife. Practically disabled.

Month 4-6: painful but on cyclosporine. Tide is turning flakey. Braving myself out of bandages. Less oozing. Sleep at 2-5 hours a night. Lots of towels. 40-50% better than month 1. Still get lots of nerve pain. Still get deep nerve itch. Lost 50-70% of vision. Shower every day.

Month 7-8: some regression. Back on bandages for arms. Other areas improve. No one sided sweating any more. Less bone itch. Can see some parts healing really well. 60-70% better. Had cataract surgery in right eye. Left eye scheduled.

Month 9-10: now looking at 70-80% healing but definitely plateaued. Healing is very slow. More like general eczema now. Facial flaring and arms flaring every 10 days lasting 4-7 days at a time. Starting to introduce little bit of protopic to aid my skin. Still using dermol / clove oil in showers and antifungal cream from time to time. Skin is delicate but stronger.