And my continuing fight with addiction
I’m an addict. There. I’ve said it.
I’ve been addicted pretty much all my life.
My parents got me my first hit and it was amazing. I couldn’t believe the high. Suddenly my skin was smooth, no eczema and I could enjoy life again. But over the years (probably 40+ years), it got to the point where I was so hooked I couldn’t go a week without using.
I tried to clean up my act a few times and did manage a few years without using. But eventually I’d flare up, my skin would get so bad I’d need them again.
And my dealer was always so happy to oblige. Of course he was. That’s how the system works.
Get you into it gently, and then before you know what’s happened there’s no going back.
You are addicted to topical steroids and there is nothing you can do about it.
But with topical steroids it seems the body is addicted, not the mind. My brain doesn’t want to me to use them but my skin is craving it like nothing else.
Protopic withdrawal is worse!
I was also prescribed Protopic, which I used mostly on my face and neck. It’s an immunosuppressant, not a steroid and I’ve read that withdrawal from Protopic is worse than from topical steroids… brilliant! A double whammy for me then!
It’s not really a drug though right?
And it got me thinking. Yes I was addicted to topical steroids but it wasn’t like other addictions. With drugs, alcohol, gambling, sex etc. you use the drug to escape, you get pleasure from it and you enjoy it.
With topical steroids that part of the addiction is missing. We never craved or wanted this drug. We just wanted a normal life, and for a while topical steroids worked.
But they should never be prescribed long term.
What’s addicted is the body, not the mind. Which actually makes them easier to quit in many ways. There are no mental cravings. Not for me anyway. Once I’d faced the beast in the eyes and decided to quit, there was no going back. No matter how much it hurt or burned or disrupted my life, I wasn’t going back. I’m never using topical or oral steroids again.
But how does TSW compare to other addictions?
Typical alcohol addiction facts
If you were addicted to alcohol you could join Alcoholics Anonymous (AA) and get help from recovering addicts using the 12 step process. Typically withdrawal takes 30-90 days and programs are available across the country.
The huge difference here being that alcohol addiction is recognised and there is treatment. And withdrawal takes anything up to six months. You can get your head around that. It’s a long time but it’s a doable goal, it’s achievable.
You will have to deal with cravings, temptations, tricky situations but your appearance will not change. You will not be in constant pain, unable to sleep and embarrassed to leave your home due to how your skin looks.
Typical heroine addiction facts
Withdrawal begins about 6-12 hours after your last hit. Usually people get through withdrawal in about 7 days but it can take weeks or months in serious cases. If you can afford it you can check into any number of clinics for rehab. Not so for topical steroids. We are just left to get on with it.
And again, cravings and the pull to use again can be powerful at times of anxiety, hardship and depression. The mental aspect is probably the hardest to overcome, from admitting you were addicted, getting help and sticking to the abstinence.
Typical TSW addiction facts
Symptoms begin after days or weeks of stopping. They vary in severity but most people experience a break down in their skin, splitting, oozing, burning, crusting and flaking for anything from 6 months to 5+ years and counting. There is no medical support. The only support available is provided voluntarily by people who have got through addiction and share help on social media channels. There is a charity called ITSAN which offers online guidance.
But basically. You’re on your own
Your doctor will likely think you are crazy and constantly encourage you to use again and again.
And I think that’s the hardest part of this. Having NO real medical acceptance that this is even a thing.
Add that to the fact that these drugs don’t come with any warning that they might be addictive. And whilst the small print on the medicine guidelines does advise limited short term use, medical professionals are giving us the opposite advice. So who do we trust? We trust our doctors and we keep using.
Other treatements are available such as oral immo suppressants such as Methotrexate and Cyclosporine and Biologics like Dupilomab… but what happens with these drugs over long term use? What happens when the patient stops using them? For me, coming off Methotrexate after getting shingles threw me straight back into TSW again.
So please bear with me. I’m an steroid-aholic. I’ve been clean from topical steroids since February 2019 (ten months) and have no plans to use ever again.
I might seem OK but I do not sleep for more than about 3 hours a night, sometime less. My skin hurts most of the time and itches constantly. I am exhausted and just trying my best to get through this with a smile on my face. Just give me a hug and big of slack and understand if i cancel on you, I don’t want to but sometimes I just crumble under the relentless withdrawal side effects.
Are you a drug addict? Have you quit using any addictive medication? What was it like? Do yo agree that cutting out topical steroids is the most barbaric and brutal withdrawal out there? It takes a strong person to even embark on this journey…
Please comment below…