Rheumatoid Lung fears

Posted , 6 users are following.

Dear friends, I’ve been frightened of asking  about this for fears of what I might learn but here goes. I’ve mentioned before that my lungs have been affected by methotrexate and also by some severe chest infections. I’ve never smoked or worked with any known pollutants.  

I now take Benepali and prednisolone but every time I get my steroids down to about 10 mg I can feel the difference in my lungs and increased breathlessness.  I’ve been referred to a respiratory centre with a special interest in rheumatoid disease and I see them on 5th September. Does anyone have any experience of this?  I hope I don’t regret asking this question!  Carol

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  • Posted

    Bless you Carol, i'm sure everything will be ok and someone here will give you some reassurance. Sending my love and fingers crossed for the 5th xx

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  • Posted

    I have had something similar. I’m on plaquinel, remicade, and prednisone (dosage varies but never below 5mg). I’ve had breathing difficulties and coughing off and on for the last year or so. I’ve seen a pulmonologist 6 times and had all kinds of tests. Each time my lungs have been clear and the tests fine. We have finally determined that each time the breathing issues start when my remicade is wearing off we have been working with the dosage and frequency. So the more I move into a flare the worse my breathing becomes. It’s never been to the point where I have to go to the ER. He pulmonologist thinks my body takes more shallow breaths as the inflammation increases around my chest and ribs. I can take deep breaths if I concentrate on it. I’ve tried benedryl, and inhaler, and Pepcid when it happens. They help a little but not much so I’ve quit taking them. He rheumatologist thinks this just may be a a thing for me, he hasn’t seen it before. I really hope this doesn’t mean I will have lung issues in the future. 

    I hop you find and answer and feel better. I just wanted to share my experience as it seems unique. 

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    • Posted

      Thanks jbjb for sharing your experience. When I first noticed a problem it was just a sort of silly persistent cough but they kept saying my X-rays and chest were clear but I knew there was something wrong. I am fortunate enough though to have a friend who is specialist respiratory  nurse who helped me. A CT scan showed some fibrosis which they couldn’t decide whether it was due to the methotrexate or a recent severe chest infection or both. 6 months later it showed ‘significant deterioration ‘. I’ve been on steroids most of the time since.  

      I always thought I’d never take part in any drugs trials but I think there are some going on. I’ll just go with an open mind and listen to what they have to say.  It’s not much fun when you can’t get your breath. It’s very good being able to give vent to my feelings on here though. I’m not sure my family are ready for my fears yet! 

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