Bronchiectasis Dx Adding to GCA

[Moaningxcat]

Hello, I have complained previously about a deep cough, sometimes productive/sometimes not, and chest heaviness. My rheumatologist ordered a CT scan and found infiltrates, opacities, and cylindrical bronchiectasis. Looks like I have a nontuberculous mycobacterial infection.

I plan on asking my rheumatologist about antibiotics and whether I should stay on methotrexate. I remember PMRPro saying methotrexate may cause lung damage. I’m wondering how lung infections are treated if taking an immune suppressant like prednisone?

I’m also having difficulty tapering down from 30 mg of prednisone. I tapered to 27.5 mg and went back up to 30mg 17 days later due to ache on the right side temple to back of my ear. Rheumatologist wants me to try the taper again, but I’m a bit fearful Rheumatologist also suggested a pet scan to see where the inflammation is coming from.

If anyone has thoughts, advice, experiences, please pass them along! All will be greatly appreciated. Thank you for being there.

[Bridge31]

I have bronchiectasis, diagnosed 12 years ago after an unrelenting chest infection and endless antibiotics. I had Psittacosis in 1989 and that had caused the scarring on my lungs. I had no idea until it was all over (that was the only time in my life that I said please do not let me lose any more weight 😀) that I had been standing next to a parrot’s cage but there was photographic proof.

The consultant said “ if it’s any consolation the parrot is dead now “

However, apart from a permanent cough the condition doesn’t really affect me except perhaps it explains why hills and inclines have always been difficult and now PMR making them even more so.

I hope your Rheumatologist can sort everything out for you soon.

[Moaningxcat in reply to Bridge31]

Thank you for sharing. Glad to hear the bronchiectasis doesn’t affect you too much.

[Temeraire]

My husband has had Bronchiectasis base of one lung since childhood. It dosen’t stop him doing anything really. He does cough a bit (productive) and does daily breathing exercises (which really has reduced the amount of infections he was getting). He has an emergency pack of antibiotics - has not needed to use it for some years now. I highly recommend daily breathing exercises (physio taught him). Walking when you can is good too. Hope you feel better soon.

[Moaningxcat in reply to Temeraire]

I have begun some breathing exercises and that does seem to help getting a productive cough. Nice to hear the exercises helped your husband. Thanks for sharing.

[PMRpro Ambassador]

I don't think I would be asking my RHEUMY about treatment for a lung infection - that is the province of the chest physicians, However, if you have an infections and especially if it requires antibiotics, then the standard procedure is to pause the methotrexate until you are recovered. Usually lung infections are managed in exactly the same way, pred or not. Antibiotics and an increased dose short course of pred to reduce the lung swelling.

[Moaningxcat in reply to PMRpro]

Thanks PMRpro. I don’t have an appointment with a pulmonologist until next month so that’s why I thought of asking my rheumatologist. I don’t have much faith in my current GP and am switching to another GP next month. I have been telling GP about my chest/cough symptoms since April and she would order an x-ray and say it’s not pneumonia and would not respond when I asked her, if not pneumonia what is it…. So, it’s been a bit frustrating.

[PMRpro Ambassador in reply to Moaningxcat]

I'd have a word with the practice manager. There are a LOT of lung things besides pneumonia!!

[whisperit]

I have a small area of bronchiectasis on one lung, detected some 25 years ago when I picked up a chest infection that took an unusually long time to clear. Its origin remains mysterious.

I was briefed always to start antibiotics immediately if I had a URTI, but in fact, I've only needed to do so once in all that time. When I later developed autoimmune insterstitial lung disease, the resp. consultant started me on 50mg of pred and the ILD died down. The bronchiectasis remained "silent" throughout.

So I may have been lucky or atypical, but hopefully it wont be a big issue for you either. x

[Moaningxcat in reply to whisperit]

Happy to hear your bronchiectasis has remained silent! Maybe I can silence mine too

[Pixix]

it’s on my notes, yes…but it just affects me if I try to run, if I walk up steep inclines etc. my treatment is antibiotics. I am on them permanently now, after one winter when I had five chest infections…each lasted about six weeks as it rolled from autumn to winter to spring! You say you are wondering how lung infections are treated…if taking pred’. Well, in my case the answer is just like anybody else…infections are treated with antibiotics. I’m allergic to penicillin but there are plenty of alternatives! But I’m not on methotrexate & know little about it. I think I will be in antibiotics forever now. I was lucky & was referred from my local hospital lung specialist to a Professor in charge of a large lung unit at a larger hospital, as they seemed unable to stop me being so sick. I avoid further infections by shielding through each winter, as over a 3 year period very little worked. So now it’s two of us only for Christmas, no pubs, parties, restaurant meals, relatives, gatherings etc. have relatives gathering in October! All shopping done online. It’s not jolly. It’s quite depressing at times. I dread winter. But my lungs have improved a lot.

[Moaningxcat in reply to Pixix]

It’s worth isolating if it means no lung infections! Thanks for sharing.

[Pixix in reply to Moaningxcat]

Bugs, viruses etc are mostly airborne, so if you’re not breathing in somebody else’s exhaled breath, then you stay healthy! It’s why pubs & restaurants…oh, & places where people sing..are the worst, & indoor much worse than outdoor!

[Grammy80]

You certainly know how to load up a plate...so glad you are seeing a pulmonologist. My best💞

[Moaningxcat in reply to Grammy80]

Thank you, Grammy! I hope you are doing well🎃

[Grammy80]

Everything is a process~! At this time I feel like a jetliner in a holding pattern over an international airport; round and round and......💞

[Moaningxcat in reply to Grammy80]

I wish you a safe landing, Grammy!