I am a 45 y.o. male, who has had Ankylosing Spondylitis (Rheumatoid arthritis of the spine/rib cage) for 20 years. Two years ago, I started getting a very faint wheeze from my right lung when inhaling hard. After inhaling hard 2 or 3 times, it would disappear. Being a typical male, I ignored it as it would come and go and seemed so trivial.
A month ago, the wheezing started getting worse, quite often happening with normal breathing, and occasionally happens in the left lung too. I also get mucus in my throat, especially if I make myself breathe in and out hard. When in bed, the wheezing seems to disappear. Sometimes my throat seems slightly sore, like a very mild throat infection. Occasionally I get a dry cough, coughing once or twice stops it. This happens once every 2 or 3 days, so infrequently it doesn't bother me.
I don't have shortness of breath, unless I walk fast up hills. Normal walking or other activities don't cause shortness of breath. Sometimes, my fingertips seem a bit blue. I have lost weight, but this may be down to the fact that I started a starch free diet 3 months ago to help ease the AS symptoms.
My doctor sent me for a chest xray last week, which came back normal. I'm seeing the doc again on Monday, presumably he will refer me to a lung specialist.
I am going through hell thinking I have pulmpnary fibrosis. Does anyone have experience of this? Is it possible I have PF? What else could it be?
I'm scared, as PF is a death sentence. Any advice much appreciated.
Need more answers....who follows your AS (Rheumy, GP), what meds are you on? Who suggested PF? Your symptoms could be from any number of things! Please don't get fixated on PF without a further work-up. Chest x-rays are frequently normal for many conditions. I hope your doc does refer you to a good pulmonologist who will start with a complete PFT including lung volumes. Lastly, PF is not a death sentence.
Many thanks for your reply. I am in the UK, so I'm afraid treatments are a bit more basic than the US. I have never had any real treatment for my AS, apart from a spell on NSAIDs, which didn't suit my stomach. I have eye drops once a year for Iritis caused by the AS. My AS isn't as severe as some other's, so apart from the odd flare, I learned to live with the pain more or less in the background.
The fact I have rheumatoid arthritis, and some of the lung symptoms I am getting, lead me to suspect Pulmponary fibrosis. Maybe I'm wrong, but when it starts taking a hold, progress is rapid, and a lung tranplant is your only hope of a few years of life.
My mom passed away from PF. She was perfectly healthy one day and then she started to get a small cold. Within a week of her cold not going away, I took her to the hospital. The doctors put her on a respirator after 2 days. About a month later she was diagnosed with Hamman-Rich Syndrome. This took her life in a year and 4 months. If you are having trouble with your lungs at all, seek a pulmonologist asap. I am not trying to frighten you, but the sooner you are under the care of an expert the better. Tell them your concerns and make them CLEAR. Some doctors will not listen to your real issues, if that happens find a new doctor that will find a diagnosis. Do your own research also. Chances are if you are not getting shortness of breath then it may be something less severe, but do not put it off. There are so many things I wish I would have done differently for my mom, but now it is to late.