The thug unplugged: TSW early days

The last post ended with the dilemma, to withdraw from TS or not. I wasn't expecting Grace to decide so quickly, but since she had run out of TS and was already more than a week into withdrawal it made sense to carry on.

I think I'll be doing most of the posting because I'm a writer and that's how I deal with things whereas Grace deals by internalising. I do think it's important that so many people are documenting their journeys because it helps others who are desperately seeking information and it will provide data for researchers when someone gets round to it.

Day 16

Redness but not extreme, flaking, itching and insomnia. The sleeplessness isn't just down to itching it seems to be biochemical. Some pus-filled eruptions on body.

The worse thing about the early weeks seems to be the fear of what's to come. It's like seeing a forest fire coming towards you and knowing that you have to stand and burn. BUT there are new cells under the charring and new leaves will form and while the forest floor is smoking, a bird comes back and begins to sing.

It's shit that I can't walk in her shoes I can only walk with her and buy stuff. Today it's extra sheets, long sleeved cotton tops with mitts, jojoba oil and dead sea salts.

A lot of this will be down to mental strength, staying positive and using all the techniques out there for dealing with stress. More about this later.

Anti-inflammatories part 1: Hydrocortisone, the Thug

The Thug

Hydrocortisone is prescribed to most eczema sufferers. The box says 'Effective relief for inflammation, irritation and itching.' True enough. The leaflet inside warns of two possible side effects: allergic reactions and stretch marks. Mmm, not quite the whole story.

Hydrocortisone (cortisol) is a glucocorticoid. Raised levels lead to:

Weight gain and obesity. Cortisol provides a potent fat storage signal especially in the abdominal region. An enzyme in belly fat converts inactive cortisol back to active cortisol. Not good.

Immune system suppression: susceptibility to colds and infections, slow wound healing, food allergies, cancer and autoimmune diseases.

Gastrointestinal problems

Cardiovascular disease. Constricts blood vessels and raises blood pressure.

Fertility problems. Disrupted sex hormones.

Reduce collagen synthesis.

Calcium store depletion. Inhibits bone healing.

Fluid retention.

Insomnia and mood disorders.

Now the doctors will very likely tell you that the levels of hydrocortisone in the creams are low and safe for long term use, but a number of the conditions above lead to the production of yet more cortisol in a positive feedback loop. And is it just coincidence that after 20 + years of topical steroid use Grace has at least seven of the above? In particular she has become more susceptible to skin infections, and also experienced some autoimmune blistering.

And now the shocker: steroid addiction.

The creams that initially suppressed the problem can become the cause of the problem. Localised rashes become widespread. Steroid resistance develops. Higher strengths are used. The problem escalates till there is nowhere left to go but withdrawal.

Withdrawal is a protracted and highly intense process. Steroid rebound is often described as hellish. It lasts for months to years. The ITSAN site advocates complete withdrawal and gives advice and support to sufferers. Everyone using or prescribing steroids should take account of this, but much more research needs to be done. When there is insufficient data doctors can become invested in a particular position and it is difficult to see the true picture. Looking at the evidence of bloggers gives a mixed picture with some achieving remarkable healing and others struggling with frequent flares.

Grace ran out of TS two weeks ago and is already in the early stages of withdrawal. So what to do?

Questions

Is it possible to achieve a softer landing by tapering TS?

Does TS cause a significant increase in circulating cortisol? To what extent does it suppress adrenal function?