Lung fibrosis

Have just been diagnosed with fibrosis of the lungs probably caused by 30 plus years of methotrexate and radiotherapy 20 years ago, etanercept and nitrofurantoin!! Any ideas what to do for breathlessness

[Dilly2]

I find your post interesting I was diagnosed with R.A 20 years ago not long after COPD

My R.A specialist said they are not connected

I also took Methetrexate by the by bucket load. Wasn't giving me the injection form still think there was a connection but they say not.

[Biofreak]

When I was given methotrexate when I was first diagnosed I very quickly developed a persistent cough followed by repeated chest infections. I was taken off it after 4 months because I couldn't tolerate it. The coughing stopped in a relatively short time. I have 2 friends who were on methotrexate and both have chest problems. My brother has been given methotrexate which he has been taking for 12 months for RA and he now has a persistent cough. In the guidance on methotrexate I believe it says there is a possibility of lung lesions with long term use. There must be some stats on this somewhere but methotrexate is always one of the first line treatments for RA. I now have to use inhalers ever day and I think it was the methotrexate use that caused the damage. I doubt health professionals would agree though.

[wishbone]

Sorry to hear this Rheumajoy. I was diagnosed with it just over 3 years ago. My chest consultant reckons my RA was the cause and not methotrexate, which I understand can cause another lung condition. He still advised me not to take it anymore. I believe it's the RA inflammation getting into the lungs that does the damage, though I think there can be other causes such as chest infections, which can also exacerbate the condition. Indeed, not long before diagnosis I had a prolonged flare from hell during which time I developed a nasty persistent cough, so it does seem likely that was related to the fibrosis.

I

[helixhelix]

RA does lay you open to lung disease, sadly. It is one of the features of this disease. Have you been referred for a lung rehabilitation programme? I gather this can help quite a bit

Methotrexate brings other risks with it, so probably not helped. But it’s not necessarily the cause. Here's what I found from a 2018 research paper:

“In a systematic literature review of 3463 patients with rheumatoid arthritis who were receiving methotrexate, 84 patients (2 percent) had some type of lung toxicity, but only 15 were felt to be definitive cases of pneumonitis attributable to methotrexate (0.43 percent).”

And lung fibrosis is far more common that RA. 1.2 million people in the UK as against 400,000 with RA.

Anyway, look after yourself and hope it progresses very, very slowly.

[Whiskers64]

Hi sorry to hear this as I too have lung Fibrosis also as my GP told me most probably caused by taking Methotrexate for my RA early on for about 14 months but as I started getting chest infections they took me off Methotrexate 6 years ago & now just 6 months ago diagnosed with COPD & I have an Inhaler to ease my breathing & having another Spirometer test on 7/08/2019 to see if the inhaler has helped or whether I will need to have a different one. After results of Spirometer test depends on a CT scan happening. Strange because when I was first diagnosed with RA & my Rheumy said they would put me on Methotrexate I questioned it saying I had heard not good reports of this & he said don’t worry more people have benefited by taking it than haven’t. Well I suppose the likes of you & me & others here have not been so lucky.

[wishbone in reply to Whiskers64]

Hiya, your GP may be right saying methotrexate probably caused your fibrosis. My chest consultant thinks differently though. He said it was highly likely that RA caused my fibrosis and also advised me to stop taking methotrexate, not because it could make the fibrosis worse, but because it can cause another lung condition (I know not what one) that can mask the progress of my fibrosis. He, my consultant, was going to discharge me following my last lung function test a year ago June just gone, but he changed his mind when I told him I was hoping to start taking baricitinib in the not too distant future. He now wants to see me again because according to him..there is/was some signs that baricitinib can help people with COPD and hopefully pulmonary fibrosis too. I have an appointment at the chest clinic next month.

[Whiskers64 in reply to wishbone]

Hi wishbone, thanks for your reply. It seems that whatever the causes of our complaints that we suffer it is as you say a result of RA whether through taking medication or of the complaint itself whatever the reasons it’s good to be able to come onto a forum like this & compare & discuss our various problems, great to talk about it.

[wishbone in reply to Whiskers64]

Until now I've steered clear of posts about pulmonary fibrosis...it's been the old head stuck in sand syndrome, which until joining this forum a few years ago I've tended to do regarding my other health conditions as well. But as you say, it can be good to discuss our problems and hopefully learn something useful in the process.

Wishing you positive results with your Spirometer test, and the same goes for my test as well!

[Matilda_1922]

I was diagnosed with bronchiectasis 2 years after RA diagnosis

I'm not sure if they are connected but the literature says they are.

[JFlay in reply to Matilda_1922]

I'm concerned about bronchiectasis as my mum has it and psoriasis ☹️ she doesn't have RA or PSA but I doubt she's ever been tested for them (she's 82) even though she gets similar aches & pains to me. I'm sure my RA has some sort of genetic link to my mum 🙄

[Matilda_1922]

There is not a family link for me. I'm the only one with diagnosed RA. I'm one of 10.

My mum is 97 and no signs of RA just OA.