Interstitial lung disease/pulmonary fibrosis - new diagnosis advice needed

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I'm in the UK and was admitted to hospital recently with a suspected gallbladder infection and was kept in on oxygen after scans and tests revealed low sats and lung disease! One consultant told me that blood tests had revealed a rare immune disorder which can also affect the muscles. At home now and on 40 mg Prednisolone per day till I see a consultant again re evaluation and introduction of a new drug - presumably something to suppress the immune system?

I was asked how long I had been breathless or coughing and the answer was never! Ditto re muscle problems. Was just a bit tired when dog walking last summer. The consultant was positive and said they should be able to stop progression and maintain quality of life. Not holding my breath (or maybe I should).

While in hospital I missed my gallbladder consultation at another hospital. This was to arrange surgery as we do know it needs to come out. The problem is I am now in constant pain . My chest hurts and I have pain below the breastbone. Plus I have had neuropathic 'burns' with 'pin pricking' and itchy, sore skin. I think some of it is due to the gallbladderand some down to chest/nerve inflammation but for the moment, the doctors can't get a handle on it and I'm on Gabapentin, Amitriptyline, codeine and paracetamol to cover all bases. So far only the burning has stopped.

Has anyone had either neuropathic or ordinary pain along with a lung condition? If so I'm hoping the steroids will help when they kick in - but it's difficult knowing what symptom is down to what condition.. I hate being on steroids and other drugs and I just wondered if anyone had found any particular drug/therapy/lifestyle/diet helpful (or not). Trying to be informed. Not helped though by the discharging consultant who refused to give me the name again of the immune condition saying that all I needed to know (patronising much?) was that I had fibrosis/interstitial lung disease. It wasn't in the GP letter either.

All advice appreciated. Thanks.

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  • Posted

    Hi you sound just like me, sorry to say. I have several lung conditions, Emphysema, Pulmonary Fibrosis, (Idopathic Pulmonary Fibrosis is also an auto Immune disease, I don't have that, mine is from a known cause) Bronchiectasis plus Systemic Scleroderma (auto immune disease) and oh boy do I itch, could tear my skin off at times, also seems to affect my gall bladder, eating certain foods causes hell, so now I avoid them, these same foods also cause fairly bad acid reflux. and yes I have a point in between my breast bone where it feel some times like some one has stuck a knife in me, much better when infection is under control. I am on Prednisolone, doctor initially put me on 40mgs like you, lung specialist took me right down to 10 after the infection had died down as he said it was counter productive at high doses, I have got my self down to 5mg a day and rarely cough, was coughing day and night before. personally I have refused to go on Esbriet or Orfev because I really don't believe they can help me and I don't feel that bad considering, don't want the known side effects of the fibrosis suppressant drugs, but that is my choice, every one is entitled to their own opinions.will probably be on oxygen I'm told in six months.

    I walk my dogs every day as i believe in making my lungs work as best they can without damaging other orgens, I have a personal pulse oximeter so that I know when I am pushing myself too hard, so far i have defied their predictions and intend to continue in that vein, lol. So for me lifestyle and diet have been good and a positive frame of mind, I will not let these diseases get me down. I live on my own (widowed) in the mini mountains of France so have to bring in and stack the logs, mow 2,000m2 garden, walk dogs and things like that. all I can say is keep away from smoky atmospheres, dust, cold wind, put a scarf over your mouth to warm the cold air and nothing made with flour, no fried or greasy food and keep away from take aways, no problem here there aren't any lol.

    Chin up, think positive. All the best. Sue

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    • Posted

      Thanks Sue, that was useful. So it could well be that all or most of my my symptoms are down to the lung condition rather than the gallstone.

      You are an inspiration. I gave my last dog another 3-4 years of quality life after vets said she would be dead in 3 months from a liver condition and I will adopt the same attitude for myself. It was scary while in hospital how different doctors had different opinions about what was going on and how to treat it. They aren't infallible and ultimately it's your body and you have to do the research and be proactive re your own health.

      Good luck to you.

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    • Posted

      Hi Chris

      Thanks for the compliments, there are a lot of people that would just say I am pigheaded lol.

      Gallstones are incredibly painful and the pain can radiate a fair way into unexpected areas and all round the chest.

      Does really depend on what conditions you have as to how the symptoms vary, I cannot say that this or that is down to that disease and not another one,. Have you had CT scans?, I was having them every three months, now only every 6 months. Seems my Scleroderma (internal) is the worst one at the moment but that can calm down and seemingly even stop for a good while after about three years of being very active, so hoping that is the case.

      I now take nothing at all bar the 2 1/2 or 5 mgs of Prednisolone, depending on how I feel, and that is to mostly control the severe coughing I have, painkiller if really necessary, each of us seems to be different, no one script fits all. I abhor the idea of putting more chemicals into my body and that is why I wont take them and from what I have researched they have not been tested on someone with my diseases combined and the other research doesn't say much about Pulmonary Fibrosis and Emphysema combined (CPFE) only for Idiopathic Pulmonary Fibrosis, everything seems to be very contradictory. So for me thanks but no thanks, I will take my chances.

      For me being proactive seems to be working, I have a Pulse Oximeter and have worked out what makes things better or worse, blood gas wise, and am getting my self as fit as possible, for my age, do have the advantage of pure clean air here but the mountains are a real challenge, can't find anywhere really flat to exercise the dogs.

      Hope things get sorted and that you can find out what you have so as to be informed on helping yourself. One of those doctors WILL get to the bottom of it, and you will then get the specialist care you need, I was severely mis-diagnosed for years.

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    • Posted

      Hi Sue

      Yes I have had a CT scan of the entire area along with specialist blood tests. Anyway, having said I have no symptoms, I got up in the night to use the toilet and developed very shallow breathing and a fast heartbeat. The first time anything like this has happened. After resting most of yesterday, today there is less pain but my chest feels tight/constricted. I'm wondering if I have developed pleurisy and/or have some fluid on the lungs. Keeping a hospital bag on standby and back to being scared again. This is not the way I want to go. Fortunately I have both a GP and a Consultant appointment in a couple of days. The original consultant said they would be able to stop progression but Google says otherwise. I'll be asking a lot of hard questions.

      Meanwhile I got myself an oximeter but I'm afraid to use it as I suspect my sats are low and I'll panic!

      No infection was found during my stay in hospital - the steroids are simply to reduce inflammation. Not sure how they will know if they are working other than re-scan.

      Working on an anti inflammatory diet.


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    • Posted

      Your stats are probably better than you think, mine are !! I can go down to 79 blood oxygen if I push myself too hard, like trying to walk up steep hills, running upstairs or like the other day getting in two full wheel barrows of wood, I take a 10 minute 1/2 hour rest and am back up to 92, occasionally I can get up to 96 which is REALLY good for me. I yoyo like this through out the day, now know what too low a number feels like. So don't use oximeter much now. Anxiety can make things 10 times worse you know, I am not one to panic luckily for me, otherwise I wouldn't dare move, my phylosophy is to make my lungs work as hard as possible without getting too far into the danger zone for too long. My chest feels like my bra is three sizes too tight and yes I do get a nasty pain on my right side that radiates all round my back, gall bladder problems as that is where the gall bladder is, serves me right for not sticking to a healthy eating plan and giving in to temptation.

      Ease up on the panic stations, exercise, eat right, worrying never gets you anywhere except ill. Que sera sera as they say. No amount of fretting will make it any difference. Sincerely hope you can let go of the anxiety and let the doctors find out what is what, you fretting about this or that could send them off in the wrong direction.

      All the best Sue

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