RA & Lung Damage

[Whiskers64]

Just had a CT scan & it shows a large Pulmonary Fibrosis which has nodes attached. I was told by the Respiratory Specialist at Hospital it was caused by my RA attacking my Lungs more than my joints & will now have to be monitored. Now have inhalers as well as pills. Be warned fellow sufferers.

[Jemmel]

Yes unfortunately after having RA for 22 years,it is now attacking my heart and my lungs.

Recently this last month also been diagnosed with Overactive thyroid! Which is another gift from RA apparently!

Luckily I have a fantastic RA Team and these have all been caught and dealt with quickly.

My advise is get in touch as early as possible to your team for advice if you have any symptoms.

[Whiskers64 in reply to Jemmel]

Thanks Jemmel for your reply after this last episode I certainly will take more notice of any changes that occur other than my joint problems now I know that RA can effect any part of the body. Hope your problems do not get any worse.

[KittyJ]

Thanks for warning us Whiskers, I’m sorry that you have been diagnosed with pulmonary fibrosis 😔

[Whiskers64 in reply to KittyJ]

Thanks Kitty J, stay safe & hopefully pain free.

[Balletmum71 in reply to Whiskers64]

I'm really sorry to hear this Whiskers . I hope that you will come through this and that the meds will help and that you are given good advice on how to manage it .

I'm interested in this becaise I have recurrent chest infections that turn to pneumonia

I'm constantly on steroids for breathing as well as RA and I'm not improving .im only sero negative although the immunology team I'm under have picked up I don't what they call sero convert . So I'm wondering if I could be sero positive but don't show it due to things not showing in my blood even though I show good evidence of a disease ?

Can I ask how you were diagnosed and who sent you for the tests e.g. GP or Rheumy?

[Whiskers64 in reply to Balletmum71]

Hi, also sorry to hear of your Lung problems the resent CT scan I had picked up the Fibrosis which was arranged by my GP due to a previous scan 3 years earlier & my breathing had deteriorated so as the latest scan showed the Fibrosis had got worse. I was fast tracked to see a Respiritory/Chest specialist at the local Hospital as the nasty C word was mentioned, anyway I was examined shown my scan & he was 99% sure no Cancer just the Fibrosis had nodes attached. So I had a lung function test & on Tuesday this week I have got to have a Lung Volumn test but as it's all due to my RA I have got to go back & see my Rheumy for different medication on my Lungs. So after all that it was instigated by my GP. Hope you get some answers soon & relief from this rotten condition.

[wishbone in reply to Whiskers64]

Sorry to hear that your PF has got worse and wishing you all the best.

[wishbone in reply to Balletmum71]

Hi, my pulmonary fibrosis was discovered by rheumy via an chest x-ray to see if my lungs were ok to start methotrexate. I have a full lung function test every year and thankfully there has been little change since I was diagnosed 4 years ago...all fingers xxxx that any deterioration continues at a snail's pace..............................................

So far my GP has had nothing to do with my PF, rheumy refferred me to a respiratory consultant who arranged CT scan etc.

Can't be 100% certain of course, but I think my PF started, or possibly became physically noticeable, during a horrendous prolonged flare when I developed a nasty persistant cough. I am seropositive and have a difficult to control aggresive form of RA. Although females outnumber males with RA, apparently it's males who are at more risk of getting PF...typical of us poor blokes getting the rough end of the stick innit! Not sure if being seropositive makes someone more prone to PF than seronegative, but I'd be surprised if any existing stats did not show that the former outnumbers the latter for PF and lung nodules.

Hope this helps and you remain clear of this horrible condition.

[Whiskers64 in reply to wishbone]

Thanks for your reply it made interesting reading I didn’t know about the male female thing. I thought my PF started after having Methotrexate prescribed for my RA but after my 1st scan they found the PF so they stopped the Methotrexate but according to my recent visit to the Lung specialist he assured me that it wasn’t but definitely due to my RA. Stay safe.

[wishbone in reply to Whiskers64]

From what I can gather, which ain't much, some rheumatologists think PF is caused by methotrexate while others think it's due to RA. My chest consultant is in the latter camp, at least I think he is as that's what he told me when I first saw him 4 years ago. The last and hopefully the final time l saw him was several weeks back when my CRP markers were very high so I asked him if RA inflammation can exacerbate my PF, to which he replied no as they work off a different mechanism to each other...his words not mine. Must say that confused me more than a bit as I've been told by more than one rheumy nurse that it did! If it's not inflammation getting into the lungs then how the hell does RA cause PF?...the mind boggles! I'm not sure I want to know anyway! He, my consultant, doesn't want to see me again and has handed over monitoring my lungs to rheumy at a more local hospital I'm glad to say . Can't say I'm sorry to see the back of him as he wasn't very tactful with things he said and contradicted himself on more than one occasion.

Sorry for the rant, I hope your consultants are better.

Take care and good luck.

[wishbone in reply to wishbone]

Forgot to say that I read somewhere that men with RA are at more risk of getting PF. I clearly remember thinking at the time why the hell wasn't I born a woman!...then again!

[crashdoll in reply to wishbone]

wishbone , hi! I was just thinking about you yesterday that I hadn’t seen your name pop up for a while. Good to “see” you and hope you’re as well as can be.

[wishbone in reply to crashdoll]

Hi crashdoll, I'm not feeling too bad thanks. I have the usual aches and pains but thankfully no additional issues to be concerned about, which certainly makes for a nice change. The last of my ulcers has more or less healed so I'm back on baricitinib again. I could do with a good long uninterupted run with it now.

Hope you're not feeling too bad. Reading your reply to Balletmum, I take it that your lungs showed no signs of fibrosis after? Don't know much about bronchiectasis, but that sounds like a bundle of fun as well! Glad to hear you improving though. Do you know if it's methotrexate that instigates the condition? How are them ulcers of yours doing?

[crashdoll in reply to wishbone]

Oh that’s good news about back on barcinitib. I’ve got around 10 horrible ulcers and a few of them are infected. I’m in a lot of pain but receiving really good care.

They’ve not yet firmed up the diagnosis. They believe there may be some issues with my smaller airways. We shall see. I live in hope they may find a name for it.

[wishbone in reply to crashdoll]

Ten ulcers! ...and there was me thinking three was a lot! Hope the infections clear soon and the small airways issues are not too serious.

[Evaibrahim60]

I had to deal with my lungs conditions before even starting rheumatoid meds. Last May they removed some nods and water as well as part of my left lung!

[Whiskers64 in reply to Evaibrahim60]

Sorry to hear that your Lung condition has deteriorated hopefully you have meds now & getting some relief & I do hope I don’t follow your pattern with my Lungs.

[Evaibrahim60 in reply to Whiskers64]

Off course not I pray for you not to get there I just mentioned that so all of us be careful as we receive our RA diagnosis to submit to the treatment as early as possible. It’s not something that’s going to go away if it’s ignored long enough! Thanks for kind words.

[wishbone in reply to Evaibrahim60]

Sorry to hear that. Looks like all we can do is keep our fingers crossed...................

[Balletmum71]

I had my rheumatology apt yesterday and I've been referred to the respiratory consultant as my rheumy is concerned I have bronchoetasis? Spelling or some other Lung condition..

I bring up lots of phlegm every morning and throughout the day , have SOB on light exertion or prolonged standing, Frequent chest infections , I also have a dull ache in my lung/ rib and that's not going away and it feels like it's full of water - it's not but it feel " full " and achy.

He said that it is unusual for a sero neg to have a Rheumatoid lung but not unheard of however whatever it is he's concerned and that I need to see someone .

So thank you for replying and it's been really informative and interesting. .

I hope that all of you that suffer will be able to manage your conditions well and live a good quality of life .

[crashdoll in reply to Balletmum71]

Hi balletmum,

I, too, have Bronchiectasis and I’m seronegative. Apparently it is more uncommon in young, female seronegative patients but I like to break the mould. I’ve been on a complicated and very time consuming regimen of daily chest physio therapy and nebulisers but it’s improved my quality of life and it’s worth it. Make sure you get a really good consultant and don’t be afraid to ask questions.

Good luck x

[Balletmum71 in reply to crashdoll]

Thank you crashdoll, I too break mounds . I've been called " unique" I like that .

It's good to hear that you have things under control and I feel that although I don't want another label this has been underpin of getting me sorted out . So I'm cautiously optimistic despite being told I've another dental abscess and feeling worn out .

But we will get there and move forward positively.

Thanks again for replying.

Kind regards ,

Balletmum71.

[Balletmum71 in reply to crashdoll]

Hi Crashdoll, had to go back to gp this morning and the pleurisy is recurring or not actually gone from last time. Very very frustrating.

Doesnpleurisy and frequent chest infections happen with bronchiectasis? I'm just curious .

Balletmum71

[crashdoll in reply to Balletmum71]

I think it’s quite common. I’m prone to pleurisy and it’s so painful. Some days, I can barely roll over in bed, can’t wear a bra, can’t bend over or lift my arms up etc. It’s been much better since I’ve been back on long term prednisolone. Is this an option for you?

[Balletmum71 in reply to crashdoll]

I've been on prednisolone for three years thus far and everyone I taper down my lungs get bad and up I go again

I've been no lower than 20 mgs since 20th September .

Then I got pneumonia and pleurisy ( I've lost count the number of times I have it- the pleurisy that is ) , .

Currently just dropped to 20'mg .

GP put me on gaberpentin bit I read the side effects - pneumonia is one of them !!!! And respiratory illness eg wheezines , so I'm weighing up v carefully before I decide what to do.

Tramadol that I'm on I have to be careful with because that depressess my breathing too so I take it sparingly which is why she chose gaberpentin.i asked about amiltriptyline but she didn't want me sedated with it. Which is fair enough.

Ho hum. All fun isn't it.

How are you ? And thank you for replying I do appreciate it.

I was relieved in one way to hear that someone else has the same type of arthritis to me and has lung probs as well .

But also very sorry too .

[crashdoll]

Hello Whiskers, sorry to hear your news. It must be a shock. Hopefully you’ll get on track with the treatments and I’m glad you’re being monitored. Take care.