Topical Steroid Withdrawal Symptoms

My name is Beryl Nielsen and I was born in 1953. Steroids came out in 1952, so I was on steroids as a baby for dermatitis. Over the years on and off I was prescribed Hydrocortisone, Dermovate, Aristocort, Diprosone, Synalar gel, Betnovate, Advantan fatty ointment, Advantan cream, Derm aid cream (over the counter), Celestone-M, Betamethasone,  and Hydrocortisone injection.

When the creams did not work anymore, I was prescribed Hydrocortisone tablets and Prednisone then Immunosuppressants –cyclosporine (used for heart transplant patients), Imuran (Chemotherapy) and Tacrolimus (Protopic).

Then I would be put back on the topicals and repeat this cycle over and over.

I went cold turkey for all steroids, drugs and creams in September 2015.

The symptoms of Topical Steroid Withdrawal are similar to any addiction, except that it takes much much longer to get through.

The skin goes bright red and burns like 3^rd degree sunburn, then it cracks like mud flats, then it peels off continuously and it itches for the entire time. It then goes pale for a time before starting the whole cycle again, with the red, burning skin….

Every person that becomes addicted to topical corticosteroids has these exact same symptoms.

The redness covers ever increasing areas of your body till the only places not bright red and burning, are the nose ( head light sign of TSW) soles of the feet and palms of the hands (red sleeves sign of TSW).

Next we get chills and are unable to regulate our temperature. So we are shivering while wearing a coat on hot sunny days.

Most moisturisers make the redness worse, our hair and eyebrows fall out.

We suffer from insomnia and if we do get to sleep, we wake every two hours sweaty and itchy. Anywhere that our bodies touch makes a hot spot that sweats. We melt ice packs in record time. Our hair, skin and nails grow at an increased speed than that of the average person.

We are bed-ridden and lose weight. We lose around half a cup of skin nightly in our bed because our skin just keeps peeling and flaking off.

Then when the sweating stops the ooze starts. We swell up from thighs to toes and plasma oozes from our skin, which has a disgusting smell.

Then we start splitting behind our ears, on our eyelids, corners of the mouth, on fingers, toes, back of knees, inside elbows, soles of the feet and palms and tops of our hands.

Then the bright red flares, no longer burn. We are able to have some movement, so we are no longer bed-ridden.

Our eyes, necks, arms, elbows, thighs, knees, backs and hands, all get elephant skin, which is rubbery feeling, puffy skin that concertinas around where the skin used to be smooth. We still have the constant insatiable itch that never stops. The itch feels like being stabbed by a pin, as well as zingers, which are like being hit with a cattle prod, or electric shock.

These photos are from my TSW journey. The bottom right photo with my son, was taken in March 2020, at Russell Brand’s show in Sydney.