In amongst the negative, there’s often a positive…
For me, I’ve decided to stop taking all the drugs I’ve been taking for my sarcoidosis.
I’ve already stopped taking azathioprine as I think that it helped cause my cancer. Now I’m ready to stop taking my steroids: prednisolone. I currently take 10mg per day, every day, but it has varied from 20 mg to just 4 mg lately depending on how well my breathing and lung capacity are doing. This is all done under the guidance of my consultants at the Royal Brompton Hospital.
I believe I contracted, if that’s the right word, sarcoidosis in Xmas 1998. I remember catching a vicious virus that left me coughing violently, just like a dog barking.
I did recover from the cough, but not entirely. I noticed that I had a constant, niggling tickle at the back of my throat. If I filled my lungs with air it felt like someone was ever-so-gently stroking my lungs with a feather. So I’d cough to clear my throat. And spit out small amounts of white sputum regularly.
Eventually I went to see my GP who prescribed a course of antibiotics. Standard course of action. But it didn’t work – still had that tickling sensation. But I did find out that I’m allergic to penicillin as I came out in a deep red rash on my torso.
So, I went back to my GP who sent me to my local hospital for a chest X-ray. And this is when my life changed forever.
The chest consultant rang me and said I had to come in ASAP. It was urgent. She showed me my X-ray, which looked like loads of very large lumps going down my spine and my lungs covered in thick fog. She explained that I either had:
- Lung cancer. Great, I don’t even smoke
- Tuberculosis. How the hell did I get that? I’d had the BCG vaccination at school so surely I should be immune?
- Sarcoidosis: which I’d never heard of. Incurable, can be lifelong, potentially deadly. Just what I needed…
I was then given a quick test to see if I had TB – nope, I’m immune. In hindsight, I sometimes wish I had had TB, because, by now, it would be gone, assuming that I survived it of course.
Next, they asked me if I had any red areas – skin lesions – on my body. And I did, right in the small of my back. I never new I had it – my partner asked me what it was a couple of days previously. That was lucky, they said! They could take a quick biopsy of the lesion and see whether or not it was sarcoidosis, rather than a much more intrusive and painful lymph node biopsy in my neck.
And sarcoidosis it was.
The first treatment: do NOTHING. That’s right, nothing. Apparently, sarcoidosis often ‘burns itself out‘ after a year or so.
So I waited a year and there was no change. In fact, it might be a little worse.
So in June 2000, I began my treatment. This consisted of a heavy dose of steroids. I think it was 100mg per day, progressively reducing to 20mg per day in three months time. I was prescribed prednisolone, a very common steroid that they know a lot about. The theory is that by blasting your body with high doses of steroids, it can kick start your immune system and so help the sarcoidosis go into remission.
As you can imagine, I piled on the weight, became bloated, moody and had trouble sleeping.
The theory didn’t come true for me and I’ve been on varying doses of steroids ever since. They work alright. The skin lesions have gone thanks to another drug called hydroxychloroquine. The steroids keep me going from day-to-day…
My Theory: Go Drug Free
Well, while in hospital, I developed a theory. If blasting your body with steroids could work; then removing them completely and instantly might also have the same effect. There’s no scientific evidence for this of course, but, then again, there’s no evidence for a cornucopia of things.
I’ve resolved to try it and I’ve stopped taking the effing prednisolone.
It’s a leap into the dark. But I hope that my theory works cos I’m sick of it.
Now I’m drug free for the first time in nearly 15 years.