Lung Disease

I have Organizing Pneumonia and RA just wondering after having a lung biopsy and on steroids, results of cancer was negative but just don't feel right. I am very bloated and actually look like I am 8 months preg. And my stomach actually feels like it's going to bust open. What is the deal here? Is his the steroids making me feel like this or could there be something wrong? I have no energy, fatigue, nervous, tired, pain and just need answers about my health. I guess I'm just wondering how long does this take before your are actually in the stage of fibrosis??

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  • Hello Patti1962 .

    I have RA and Bronchiolitis Obliterans. Just so that I'm clear, were you diagnosed with BOOP , Bronchiolitis Obliterans Organizing Pneumonia ? BOOP and BO share half the same name yet prognosis is quite different. BOOP is it seems is treatable and most patients recover with corticosteroid therapy. BO is not and often requires lung transplantation. May I ask what kind of cancer you were screened for?

    The bloating could well be from the steroids. I too am bloating and gained eight pounds over the couple of years I have been on steroids. My pulmonologist has assured me once I go off them I should be able to lose the weight. Do you know exactly how much weight you have gained? If you have gained a significant amount this should be taken up with your doctor. And any underlying causes other than the steroids should be ruled out, just to play it safe. I understand how uncomfortable this extra weight is. I absolutely hate it and try and keep as active as possible. Yesterday I went out and bought a rather shapeless loose dress because my tight jeans are no longer practical. They just make it harder for me to breathe.

    As for your last question I am sorry I don't quite understand. If you have had a lung biopsy the doctor should know if you have fibrosis or not.

    I'm sorry I'm not more helpful. But I'd like to be supportive. I know how awful the pain, fatigue, swelling and breathlessness is.

    Thinking of you.

    Cas xx 🍀

  • Good Morning Patients. Sorry to hear your having a rough time. I can't advise as I've no knowledge of your condition. Try the hp line or your GP. Hope things improve soon Nan

  • Sorry about that Patti must check before I send

  • Caspiana has replied brilliantly. I can't add any more to what she has said. I too understand that BOOP (now known as Cryptogenic Organising Pneumonia COP) does usually respond to treatment but I think it can take time. Is there any evidence that there is fibrosis? I am sorry that you feel so rough. Be gentle with yourself and give it time. Come on here and have good moan.

    All the best

  • Hello Katinka46 . 😄😘

  • Hi Patti, I also have idiopathic interstitial pneumanitis, likely cryptogenic organising pneumonia with bronchiolitis and type 1 respiratory failure requiring oxygen. I gained 7 stone in weight with all the steroids and other medication. I was diagnosed over 4 years ago and have just managed to lose my weight. I have responded to my treatment but it does take a while. Try and be patient things will get better. I'm finally able to go abroad again this year it's been a long fight and I'm still fighting. Try and stay positive. Good luck x

  • Hi Hun I have rheumatoid arthritis and asthma/emphysema/organising pneumonia/ bronchiolitis and interstitial lung disease with ground glass opacities in all lobes :/ I'm not oxygen dependent yet tho I sure feel I need it! It seems to come in plateaus and nosedives, I feel myself going downhill for a few months before I hit respiratory crisis and end up admitted to hospital. I have a Facebook page called rheumatoid arthritis interstitial lung disease if you would like to join, we have members with many different connective tissue diseases and different lung diseases too! Feel free to follow me on social media, links are on my homepage i believe. I discuss my health issues on YouTube too x

  • Hi Patti1962, I've been on steroids for 6 weeks now and my stomach is rebelling big time and I feel as though I have a baby lodged somewhere just under the bottom of my left rib cage and my tummy and my face are both slightly bloated. I'm sure this will improve once I come off the steroids. Hope your symptoms improve soon.

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