COPD?? Pulmonary Fibrosis?? Wegener's?? What the 'ell??? Can anyone help?

Just been to see consultant for the second time (diagnosed 3 months ago with possible COPD). 60% FEV1/FVC but really struggling, particularly with chest discomfort and mild breathlessness - nothing seems to help - put on Spiriva, Fostair and Seretide 125 and Salbutamol. Now told to come off all of these because investigations need to take place re: possible ankylosing spondylitis (that I was diagnosed with over 20 years ago) and the consequential effects on lung function (fibrosis), or indeed a possible diagnosis of something like Wegener's. He didn't seem very positive - any suggestions anyone?

Have also just received a letter regarding possible referral to ENT surgeon and Rheumatology consultant, to assess whether or not the symptoms I am exhibiting are suggesting that maybe I need some form of treatment such as monoclonal antibody therapy.

Does anyone know about this therapy?

What do I do next? Very croaky voice - unlikely to have been caused by use of steroids as the voice had been deteriorating for some time prior to commencement of inhaler therapy. I'm only 48 and may well have to RETIRE from teaching! Smoked 5-10 cigs a day for 10 years. Stopped 7 years ago after 20 years, then had occasional cigars (no more though!!). Also have very dark urine (can't even see the bottom of the pan!!),


7 Replies

  • Hi DaleyWaley nice to meet you and welcome to the site. I'm afraid I can't really help but am sure others will be in soon who can. We are a very knowledgeable bunch between us all but obviously can't take the place of a proper medical diagnosis. The only thing I do know is dark urine is not right. It should be straw coloured. Do you drink enough? Do you have a medical problem which could affect it apart from those mentioned? eg I know people who have had an ilectomy (not sure about spelling) who find it a problem to retain water as it affects their colon. Other than that I can't offer anything, just wanted to say hi. x

  • Thanks for the welcome and yes, I do drink plenty, and not of the alcoholic variety either!

  • Hi thats quite a list you have there .. Chest pain and lung diease go hand in hand am sorry to say and with ya bone diease i assume it will be worse am sorry to say most doc's say its muscial pain but what i found out its not .. Its more than likly lungs over inflating thus puting pressure on ya ribs .. list go's on as could be pleurisy Yep

    As far as your dark pee if its green and burns its infection .. If its deep yellow could be dehydrated but like you told coughalot you not as you drink plenty could be your pre diabetic have you been getting thristy ?

    If you pee as good head on it LIKE a beer thats a good sign but not 100%

    Even could be hot weather why pees that colour .. As long as its not red or black sure be fine.

    Doc's took you of striods as can affect bone mass

    Hope thats help .. cheers wishing you well

  • O yer forgot as far as voice try hayfeaver pills i to sufferd with voice problems but thay did improve it .. why they did a dont know

    Must be part of lifes trade offs

  • I have Wegener's and got it back in 2001. Its been quite a battle and the way it started is a cough that wouldn't go away and kept getting worse. My joints started getting stiff and I felt like I was dieing (Think my body was talking to me) anyway my doc didn't know what was going on and sent me to a rheumatologist friend of hers as she thought I might have arthritis. Her friend (the rheumatologist) said it sounds more like something else and did some extensive blood tests and found it was Wegener's. That was 4months and two weeks after the first symptoms (coughing) and I was in bad shape. If you think this could be wegener's THEN GET A SPECIALIST and do it SOON. Wegener's is nothing to play around with and can be gotten under control if caught soon enough. 5 months undiagnosed is usually fatal, it was a close call for me. Most doctors don't know what to look for unless you tell them to do tests for Wegener's as its rare. Well I hope this helps

  • Thanks GloryDaze. April is when it started to get bad, and has got progressively worse. I'm still alive and it's more than 6 months. The impression I'm getting now is that it is Ankylosing Spondylitis which I was diagnosed with over 20 years ago, but just left it and got on with my life. Unfortunately, it is probably that which is killing me now as my lungs are distending and I am starting to get irregular readings of gas transfer in the alveoli. My X-rays are interesting (a cloudy mess where my lungs are supposed be!) Thanks for your help though.

    Daley Waley

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