Lungs

[julie49]

Found out last week that I have rheumatoid arthritis in both my lungs,I’ve never heard of it before.i have to go for some breathing tests and a ct scan,I’ve already got my appointments through.....

[Shalf]

What a shock to you Julie.

How did they test you for this? I see your waiting further tests

[julie49 in reply to Shalf]

I had pneumonia over Christmas and I had to stop taking my injections,I couldn’t go back on them until I had had another chest X-ray,I was called back in to discuss my X-ray,my pneumatic was in my right lung and that was clear,but they found the other problem in both my lungs,my consultant told me I can go back on my injections....xx

[Eiram50]

I’m sorry to hear this. You must have been really horrified by this news. Can I ask what other tests they’re doing?

I know that rheumatoid arthritis can affect the lungs but I hadn’t heard of the disease being present ‘in’ the lungs, so to speak. That in itself, is shocking to hear.

I do wish you well, for the future.

[wishbone in reply to Eiram50]

I've heard it called rheumatoid lung before...it's probably just a term of phrase that particular doctor uses.

[Eiram50 in reply to wishbone]

Wishing you the very best x

[wishbone in reply to Eiram50]

The same to you.

[julie49 in reply to Eiram50]

I know I hadn’t heard of it before,my mam had rheumatoid arthritis and my brother too,and none of us had heard of it....I looked it up on the net...xx

[Mmrr]

What a worry for you, do let us know how things go for you ?

[springcross]

Hi julie49. I'm really sorry to hear that, what a nasty shock that must have been. I wish you well and please let us know how you get on. x

[KittyJ]

That doesn’t sound good, I’m sorry you’ve found this out. Did you have symptoms ? Let us know how you get on 🤗

[peejay74]

I have this too. Since diagnosed around 2 years ago it has not worsened and I have no symptoms. Hope you're similar and this is a comfort Julie.

[Eiram50 in reply to peejay74]

What exactly is it peejay? The reason I ask is I have seen a lung specialist and have a CT scan next week as she said that I have ground glass in lungs, due to MTX.

[Lizard28 in reply to Eiram50]

Hi, I had problems breathing a few years ago, the X-ray also showed ground glass. I was admitted for 11 long days. They eventually after many antibiotics for what they thought was pneumonia again decided to do a high resolution ct scan which clearly showed I had pneumonitis which is inflammation in lungs. My bloods had also showed a very high rheumatoid factor and was referred to rheumatologist. They thought it was caused by an allergy but had all the tests and nothing showed. This was another of my mystery illnesses. I hope they find out what is causing your ground glass. Steroids were only thing that helped me unfortunately.

[Eiram50 in reply to Lizard28]

Thank you for your response, it is very helpful. I’ve had RD AND AS for five years and the lung specialist was very clear that the ground glass was attributed to the methotrexate I’d been taken. As for treatment / management, I don’t know but she told me to stop the methotrexate immediately. I’ll know more about the state of things after the CT scan.

[Lizard28 in reply to Eiram50]

Best wishes and hope you find out some answers. I wasn’t on any meds at this time so they couldn’t attribute it to meds. It was a mystery . Please let us know how you get on.

[Eiram50 in reply to Lizard28]

I will. Thank you.

Did they treat yours at all?

[Lizard28 in reply to Eiram50]

I was on 40mg steroids for around six months before tapering, I couldn’t walk anywhere because of it. On a follow up a year later he discovered a small nodule on X-ray and did another high resolution one which I was glad he did as I went on to have a rare type of lymphoma a few years later and they compared the nodules with those scans and indeed I had lymphoma at each side of my lungs.

[Eiram50 in reply to Lizard28]

God, I’m sorry to hear that. I hope that things have improved for you.

I have to admit, I have a quiet worry about it myself.

[wishbone in reply to Eiram50]

I prefer to keep my head partially buried in the sand regarding my lung condition so my knowledge is limited and I may be wrong, but I think ground glass is non specific and shows up as opacity and leisions on an x-ray. Further invesigtigation via CT scans and lung function tests are usually needed to identify the problem. Future monitoring may be required as is the case with me. I do have symptoms and go for annual lung function tests. Thankfully little if any deterioration has occured in the 4 years since diagnosis.

Good luck next week

[Eiram50 in reply to wishbone]

That’s good to hear. Thank you

[Rosekerr29]

Yes had nodules on my lungs ... I'm ok to. All the best

[Bailybiscuit]

I had to go for the lung function test and then for a CT scan last year. I was wheezing and my go thought it could be damage from Methotrexate. The lungs were fine though and the CT scan of them . What was found on the scan though was a cyst on my pancreas and polyps in my stomach. I have to have regular CT scans now to monitor the cyst and had a gastroscopy to look at the polyps. Fortunately they are harmless. I hope you get on ok

[fossil321]

Hi there, I have a condition called Bronchiexstasis. This is another lung condition which comes free with Rheumatoid Arthritis. It just means I am prone to chest infections and to be fair is a bloody nuisance!! It appears that RA is a gift that keeps on giving!!!!!

[julie49 in reply to fossil321]

That’s so true

[Mumcon]

So sorry to hear this I hope that after you have your CT scan they will be able to get it sorted I always have a cough which is chesty I’ve had a lung test and it was clear and I’m still on Methrotrexate Reall hope you feel better soon xx

[Iluvgardening]

I too have bronchiectasis, which is from psoriatic arthritis and RA, it is not fun! One more thing to deal with! I am sorry you are having problems with your lungs, I have never heard the term rheumatoid arthritis lung,sounds like scary stuff! Prayers they sort it out with testing and find the perfect treatment to bring you relief.

[Gjkas]

Oh crikey. I've never heard of Rheumatoid in the lungs. It must have come as a shock to you.

Hope things work out the best for you..

Just wondering. Have you been on

Methotrexate ???

Let us know how things go.

All the best. Gjkas.

[julie49 in reply to Gjkas]

Yes a couple of years but my consultant doesn’t think it was that that’s caused it,waiting now for breathing test and ct scan on my lungs....

[Gjkas in reply to julie49]

Okay julie.

Good Luck Sweetie. xx

[wishbone in reply to julie49]

Good luck julie.

[thelmar]

I have pulmonary fibrosis in my lungs which is thought to be caused by my RD. It was first discovered 2 years ago and I have to have lung function tests every year. So far it doesn’t give me any problems and it hasn’t got any worse.

[julie49]

Thanks.

[Maddon]

That is a harsh diagnosis julie, I get sent for regular tests but I thought that was due to being on methotrexate, I hope the drugs can get on top of this

[julie49]

Me too

[Dilly2]

I've got COPD and R.A year's ago I had yellow fluid on the lungs they said it was caused through the R,A they drain over a litre off my lungs

But they insist theirs no connection.