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Sarcoidosis Crunch Time

sarcoidosis tests

Sometimes you just have to face up to reality.

And today is going to be one of those days.

My sarcoidosis symptoms have returned since I’ve stopped taking the steroids – the incessant cough, the tickle at the top of my lungs and the shortness of breath are plaguing my every waking moment.

I decided to hold off on restarting steroids until I had my regular appointment at the Sarcoidosis Clinic at the Royal Brompton Hospital, to see exactly how I perform drug free. What you might call my true state.

I normally have a barrage of lung function tests and then a consultation with a sarcoidosis specialist. Sometimes I also have a blood test, chest X-ray and a variety of scans too. But not today.

Lung Function Test

lung function tests

Lung function tests

I can’t say I enjoy the lung function tests. A respiratory assault course, my chest and lungs are stretched to their very limits. Today, I am taking three tests:

  • Spirometry: which tests how well I breathe in and out
  • Lung Volume: which measures the total size of my lungs
  • Gas Transfer: which measures the amount of oxygen that passes from my lungs into my blood

All of these involve blowing into a tube in a variety of patterns – holding your breathe with your lungs full, pushing out as much air as you can etc. Typically, I will complete at least 3 runs for each test so that we can produce an average score  and minimise the impact of subtle changes in technique. Firstly, though, they measured my weight and height (I now have a BMI of 22) and my haemoglobin and made any adjustments to the computer programme that collated my results. Variants like your weight, height, ethnicity and gender all affect what your predicted average results will be.

As I started the first test, I instantly knew my results were going to be worse than the last load of lung function tests I took in June 2014. I could feel how much more of a struggle it was to complete each test. Each test was painful and I found it hard to complete them as well as I know I can on steroids. I even had to cough directly into the tube part way through one test which I never do normally.

So I was prepared for some bad news.

Sarcoidosis Specialist

After a long wait to see my sarcoidosis specialist (I never see the same doctor twice in a row), I was finally seated in front of him. And, for some peculiar reason, I felt angry.

I recounted the recent history of my cancer diagnosis and treatment and the likelihood that the immuno-suppressant Azathioprine, that they had prescribed, was definitely implicated in me developing skin cancer if not the direct cause. First, he stated that it was unlikely that that was the cause, even though my cancer consultant had strongly alluded to that very fact. Then he wanted to take a whole load of tests from blood tests to CT scans just to be sure there wasn’t any “adverse affects” on my lungs (however rare). That’s code for potential cancer on my lungs. And “rare” seems to be unnervingly common for me.

At the prospect of this, I suddenly felt a surge of defiance flow through me from out of nowhere. I point blank declined his offer. I’d had enough “prodding and poking” recently…

A good idea? I’m not sure but I don’t think I have lung cancer – it is just the lack of steroids causing my current breathing difficulties.

Lung Function Results

lung volume down by 1 litre

Lung volume down by almost 1 litre

He was more than a little annoyed at my lack of cooperation, but there was also little that he could do.

So we moved abruptly on to the crucial part of the day. My lung function test results. As expected, they were disastrous.

On all of the vital measurements, I am significantly down on my past tests. I have lost almost 1 full litre of lung capacity  (about 20%) and I feel like I have. My general breathing, spirometry and gas transfer have also declined by similar amounts.

It’s a real blow. I had expected my tests to be down, but not by such a large amount.

Steroid Addiction

You can guess what happened next.

Yep, he wanted me to resume my steroid addiction. He recommended that I start with 20 mg per day for 2 weeks, dropping to 15 mg per day for 2 weeks after that and then, eventually, dropping to 10 mg per day after a final 2 weeks. Then stay on 10 mg until my next appointment. I said I would consider going back on the steroids.

He also strongly recommended that I consider taking an immuno-suppressant. Either Azathioprine or Methotrexate. Both have serious side effects. Here, I was much more obdurate. There is no way I am taking any immuno-suppressant ever again given what has happened to me. He said he understood and didn’t press me further.

He wrote out a prescription for steroids and my next appointment and wished me good luck. He wasn’t particularly interested in my radical change of diet as a means of at least modifying my sarcoidosis – keeping it in check and limiting how many steroids I would pump daily into my body – but he wasn’t dismissive either.

As I ambled distractedly down to the hospital pharmacy, I felt utterly deflated.

I had failed. Totally. Miserably. Going drug free plainly did NOT work.

Which summed up my mood entirely – miserable. Like speeding 10 steps backwards when you are so desperate to move one tiny step forwards.

As I headed for South Kensington tube station, I felt the dark clouds of depression swarm over me at what it all meant. I knew I didn’t really have many options open to me – I have to start taking the bloody steroids again. After all, I don’t want to cause myself any more damage – I was fucked enough already. But despite this, I felt a renewed determination to stick to my new diet and alternative therapies.

I have to give it a good shot and over many months if not years to see if it will work. Obviously, dramatically stopping the steroids doesn’t work. But steadily, incrementally, weaning myself off of them over the long term just might…


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