Ankylosing Spondylitis and COPD and constant pain in the ribs

[DaleyWaley]

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.

[Hidden]

Hi daleywaley, I'm sorry I don't know much about AS only wot I have just read on the nhs website, I'm sorry U are in so much pain and hope they can decide how they can help u sooner rather than later. Take care x Sonia x

[Suzy6]

Oh I so feel for you. I have Emphysema and ankylosing spondylitis but I find what works for one person doesn't work for another. I try to stay away from diclofenac if I can and only use it when I want to bang my had against a wall in pain. I changed my Doctor when I was first diagnosed with spondylitis and I have managed the pain quite well. There is another member called Jimmy who has both he may see your message and have some advise. Have you had physio? I did for 6 months. A lovely young lady taught me exercises I should do and things I should never do. Stay here more advise may be given.

[Dragonmum]

Hi daley - send a pm to Jimmy123 - he knows all there is about Ank Spond and a lot of other things too. He's not all that chipper at the moment but he's a lovely guy and I know he'll help you all he can once he's over his rough spot. Your experience sounds very similar to what he's gone through with the "suits" so you'll have a lot in common. Wish you well.

[jimmyw123]

i have pm,d you waley daley, hopefully can help,,, thanks to the members for putting you through to me,,,,,jimmy

[jimmyw123 in reply to jimmyw123]

can i just add, anyone with anylosing spondulitis,,,,[which is quite rare, more common in men than in woman,]

join the NASS [national ank, spond, society],,, its just like the blf ,, where you can phone up if in any difficulty or have any questions.,, its run by bath hospital,,, jimmy

[jimmyw123]

pm,d jenns,,, jimmy xxx