What can I do?
Lung function tests 65% FEV1/FVC carried out last October after speculative appointment re: possible sleep apnoea.
Results "lost" in system for 5 1/2 months.
Met Respiratory Consultant in April who was not aware of my previous discussion with one of his team re: current medication that I was on in October (namely occasional use of diclofenac for ankylosing spondylitis). Mentioned it to him again, and he asked why I had not mentioned it before. I said that I had mentioned it in passing. It was on this occasion that my October results were relayed to me and the possible consequences long-term. I was surprised that I had not been called back in in October.
Within a week of this appointment, however, purely coincidentally, I started to experience chest pain and some SOB for the first time. within a couple of weeks, I was on Spiriva and Fostair. The hope was that this would improve my Peak Flow readings. Alas, no improvement. In fact they went down from around 500-550 to being consistently below 400. Meanwhile the bronchospasms have got much worse also.
The chest pain has got worse, so much so that the lungs are distended and pushing on the front and side of my ribs continually. I returned to the Respiratory Consultant in July, only to be told that I should wean myself off the bronchodilator and the anti-inflammatory. I was then referred to a Rheumatologist. This appointment took place last week, and he wanted to know why I hadn't been referred to him much earlier. Within a couple of minutes, he was already recommending monoclonal antibody treatment (anti-TNF cell treatment) and had invited others into the room to confirm the urgent need for this treatment to try and "defrost" the spinal column so that the ribs might move slightly. However, my ribs haven't moved since I was in my early 20s ( I was diagnosed with AS in my late 20s, but in those days, not much was known about the disease.
What I don't know is the prognosis, but when I asked one of the people in the room about the possible effects of the treatment on longevity of life, she made it very clear that this treatment could only help the quality of my life. It does not work in all cases, and I got the impression that my case was probably already past the point of no return. Even though it is supposedly of the greatest urgency, why then, despite some of the shortcomings in the quality of service I have received, do I still have to go through the rigmarole of filling in a BASDAI self evaluation of my own estimation of my pain level, and wait at least another THREE months before filling it in again to say that I am still in pain (which seems to be getting markedly worse week by week)?
WHAT SHOULD I DO?
I FEEL LOST.
Thank you for listening, and I frequently read posts on here, but I don't recall seeing anyone with COPD and the added complication of AS also.