Pulmonary Fibrosis: I’ve been reading your posts for a... - NRAS

NRAS

29,374 members35,010 posts

Pulmonary Fibrosis

Anonymousgal
Anonymousgal

I’ve been reading your posts for a few months. No one has mentioned Pulmonary Fibrosis as a result of RA. I have been diagnosed first part of July. I know it is rare but I sure would like to know if there is anyone else out ther

22 Replies
oldestnewest

I’m sorry to hear that and hope that you are managing to cope with it. I see from your previous post that you have been battling RA for a long time and that in itself may be the cause although some of the drugs you may have had can also cause it.

I have to say all the different names used to describe lung diseases and problems confuse me and I’m not sure what the difference is between them.

I was told I had Interstitial Lung Disease and Pneumonitis which resulted in scarring and a partially collapsed left lung in early 2019 when I had been on MTX. Is that PF? I don’t know. I’m about to be referred to a Respiratory consultant (again) as I have a blood clot in each lung and so will ask for an explanation of all the different terms.

wishbone
wishbone in reply to Lolabridge

Sorry to hear that Lola, hope you can get it looked at soon.

Lolabridge
Lolabridge in reply to wishbone

Thanks Wish. I’m on a blood thinner now and am already breathing more easily.

Biofreak
Biofreak in reply to Lolabridge

So sorry to hear this Lola. I can sympathize. I have recently discovered that the term Interstitial lung disease is like an umbrella term used to describe problems with the lungs and it's important to get the relevant tests to determine the type of ILD eg COPD or bronchiectasis or fibrosis etc etc Apparently there can be lots of variations. I've only found out these things in recent months because my husband has been told he has interstitial lung disease after a CT scan and he is having real problems with breathing difficulty and cough but he has been waiting months already to see a consultant and get the tests he needs to find a way forward. I hope you get a quick appointment Lola.

Lolabridge
Lolabridge in reply to Biofreak

That’s very useful to know . I have an appointment with my GP tomorrow so will ask if there’s more information available or if I will need to wait to see the Respiratory consultant.

Thank you.

Push to see Respirologist. That’s who can figure this out for you. I hope I don’t sound pushy but I’ve learned over time that you have to stand up and take care of your health.

Thank you I certainly will.

Sorry to learn you’ve had/have some lung issues, Lola and hope they are resolved/controlled ASAP. x

Thank you x

💗

I hope you get in soon. I’m on oxygen 24/7. Two months ago I didn’t even know I had it. Yes ask for an explanation. You are the patient and it’s your body. Be strong. I live in Canada and am lucky to have docs who are straight up with me. Best wishes for good results. Thanks for replying.

Interesting you mention the interstitial lung disease; I was diagnosed with this 6 years (2012) before my RA diagnosis; lots of lung scarring, failed biopsy to attempt to rule out lung cancer. It's been years since and my lungs still have all this scarring way before MTX. Anonymousgal --- is it possible you had unveiled lung issues before the MTX?

Sorry to hear that, I can empathise as I was diagnosed with PF approx 5 years ago. My respiratory consultant believes it RA related and I've no reason to doubt him as I'm as sure as I can be that my lungs were damaged during a prolonged RA flare from hell. There are a few more people here with PF.

😑😢

What meds are you taking?

A low dose of Baracitinib for my RA. Apparently some rheumatologists don't like prescribing baricitinib to people with lung conditions but I've been taking it for approx 2 years without any detrimental effect on my lungs so far. My respiratory consultant advised me to stop taking methotrexate which I was on when diagnosed. Rheumy have stopped me taking all other DMARDs too, which I think is because of my PF but could be because I'm prone to infections.

Hi I’m having breathing troubles at the moment and had various tests they took me off methotrexate as my ALT readings were high for months and have a fatty liver as result plus it was affecting my lungs so hopefully they’ll get to the bottom off it but been very breathless for months now xxx

Anonymousgal
Anonymousgal in reply to rab1874

That’s how I was referred to Pulmonologist. I hope you get proper treatment soon.

Yes there are a few people on here with lung issues and various arthritis conditions. I do recall PF has been mentioned but there are so many posts here that it’s easy to miss! I think they will read your post and answer too. I would also do a search here on the site and type in R.A. and Pulmonary Fibrosis and it will take you to those posts. Our meds and just having RA can sometimes predispose us to the lung issues. I have a reaction to Rtx for the last couple of years which means I have episodes of wheeze and have excessive catahhr and it is managed by abx every couple of months. I was CT scanned for PF and other conditions and tested for asthma and I’m seeing a respiratory consultant every three months and nothing found, but there are these bronchial episodes/reactions which won’t go without abx.

There is a British Lung Foundation forum on Health Unlocked which should be able to overlap with here for you for advice. I was helped there With some sound advice by a couple of good people last year. I know my consultant refers his patients to a respiratory physio and I saw her too and she’s been amazing teaching me breathing techniques. I hope you can get all you need to manage your PF and that you are not on too much discomfort. x

I’m on oxygen and high doses of Prednisone until they decide what drug will be best for both conditions. Glad you are getting physio. With COVID I have to find programs on line. I also do 30 Minutes on treadmill everyday. I hope it helps. Feel so isolated.

I hope they can soon decide on the med(s) that will bring you relief and alleviate the symptoms. 🙏 x

Thanks everyone for replying to me. Good news today my lungs were 1.4 litres and now are 1.8 so they have gotten a bit better. She is hopeful with the Prednisone that they will improve more. Happy day.

You may also like...