lung conditions and RA

[chavaudret]

Hi I have had RA for a long time , I have just found out I have a small patch of fibrosis on my lung, Im devastated, anyone else in a similar position ?

im not sure I can cope with this, looking for support

[DelicateInput]

Hi

You must be devastated because fibrosis on the lung is very serious.

I've read your other recent post re the quandary on whether to go on biologics in view of various infections.

If the fibrosis has been caused by RA, then I would definitely try the biologic baricitnib recommended by wishbone in an earlier post. I find it best to try out drugs in the summer months to avoid the risk of chest infections so I think I would hurry if I were you.

If it is not caused by RA, then there would not be such a great need to take it.

However, fibrosis of the lung is extremely serious and I would ask for a scan if you have not had one and a second opinion. Do you have breathlessness at all because it is a sure fire symptom of lung fibrosis? Especially if not, I wonder if there is a possibility it could be a less serious lung condition, eg bronchial thickening, COPD, bronchiectasis because it seems to have been said very casually as if it is just another consequence like joint damage. Sometimes these medical terms get very mixed up.

As regards the liver, Milk Thistle (Sylimarin) is now being used in conventional medicine as it has been found to extend the life of those with liver cancer. It is a liver detox which I have used over the years as I drink quite a lot. It is very helpful in losing weight. You can only take it for a maximum of three months at a time. It is quite cheap from the health shop.

I recently found that I had bronchial thickening in the right lung, which has been caused by an infection. The symptoms (breathlessness, crackly cough) get worse every time I get a bad cold. I am not taking anything conventional for RA because of resulting chest infections (coughing up blood) which makes the condition worse. However, if it were caused by RA (as yours is said to be) and especially if it were fibrosis caused by RA then I would not hesitate.

I hope this helps and my deepest sympathy. I am surprised nobody has answered your post. I think RA affecting the lungs is not well known or common.

[chavaudret in reply to DelicateInput]

Thanks I'm having a long function test on Tuesday and a ct scan on the 12 th,I'm not breathless went for a long walk today , my gp got a copy of the X Ray from the hospital and said it looked like scaring , I feel well apart from the constant fear , I'm seeing my rheumatology team we'd to go through everything thanks for your reply maybe everyone else is fearful which is why no replies

Thanks again x

[DelicateInput in reply to chavaudret]

I was just on the Health Unlocked website when your reply popped up. Lung fibrosis causes scarring but I'm not sure if other lung conditions do eg COPD, bronchiectasis.

A bronchoscopy which should be the next step after the scan. It is hard to get this done (at least where I live) if you have never smoked. Smokers qualify because the NHS thinks nobody else is a risk for lung cancer. They are wrong about that though - plenty of non-smokers get cancer and it is not the only serious lung condition.

It is good that you are not breathless which indicates it may be very minor because that is a primary symptom.

I certainly am. I've had lung function tests which put my lung age as much older than I am - but still nothing is done. I am due another but I am going to have another try taking Ashwagandha, an African herb which boosts the immune system. I took it two years ago and nearly got rid of the cough etc but the RA flared up. It might have been coincidence but at the time I thought it had brought the RA on.

Best of luck. Let us know how you get on though I think most people on here think RA is confined to the joints and thought your post off topic. They don't even realise it affects the tendons as much as the joints.

PS I've just looked it up and bronchiectasis causes scarring as well - and probably so do other lung conditions so that will be a relief to you. These doctors bandy these medical names about as if they are all the same. I was told 17 years ago by my GP that he thought it was bronchiectasis but at the time nothing showed on the x-ray.

[chavaudret in reply to DelicateInput]

Hi just a quick thought as I'm off for a lung function test in a moment , my main complaint with all these docs is that they don't connect up

I have a very good Chinese doctor who has put me on medicinal mushrooms gandoderma and something for my mood and emotions , I have been seeing him once a week and already I feel calmer and have more energy and oddly no RA pain

Will keep you updated , I am a smoker and now on a no smoking program with my go

[DelicateInput in reply to chavaudret]

You need to ascertain whether the lung fibrosis is caused by RA or not. I would press for a bronchoscopy if they can't tell you. You do qualify for one on the NHS if you have smoked.

On the balance of probabilities, the fibrosis would be more likely caused by smoking - pre-menopause, oestrogen has a protective effect against the ravages of smoking but after the menopause smoking is dangerous.

If it is caused by RA, I would take the RA drugs. If not, personally, I agree that I would not want to be susceptible to chest infections if I have a lung condition. I would not take methotrexate anyway.

Good luck. I could not get a bronchoscopy done on the NHS as I was told that as a lifetime non-smoker I was not entitled to one. At the same time, a lady I knew got one done at the same hospital because - wait for it - kiwi fruit tickled her throat. This is because she smoked and and qualified for that reason on the NHS.

[Chrissylhall in reply to chavaudret]

I've had a similar diagnosis, and my pulmonary doctor blames it on methotrexate! He took me off it as well as 600mg Ibuprophen. I was taking 10, 2.5mg tablets of methotrexate once a week. I haven't been able to get in to see my rheumatologist yet.

[chavaudret in reply to Chrissylhall]

thanks Chrissy, please push hard to see you rheumatologist soon, mine was on holiday , but I phoned up the medical secretary and got to see the registrar who made all the appointments for me, I don't really want to take methotrexate , feel like a guinea pig , good luck xxxx

[chavaudret in reply to Chrissylhall]

are you ok now?x

[Debb721 in reply to DelicateInput]

Please follow you doctor’s advice, ask HIM these questions, Do lots of research then talk to MD at length about problems, diagnosis and uncomfortable issues .I am an old RN BSN; I believe in talking with the doctor and his nurse/also second opinion.

You can be your BEST advocate but you must do research on your issues!

Any questions, please ask

[mbd208]

Hi I found out 2 months ago that I do too. In addition there are 3 spots that are too small to identify right now. Pulmonologist has me on oxygen for sleep & when running around. I have another CT scan in Oct.

I have RA, Lupus & Sjögren’s.

Best wishes,

Mary Beth

[chavaudret in reply to mbd208]

my lung function was said to be better than my rheumatologists, not sure what that means maybe the results were good, I have had the ct scan but no results yet , had my blood test my cp has dropped from 45 to 10 which is good although my white cell count is very high will keep you updated

[chavaudret]

Hello

just a recap on the fibrosis , it turns out to be lung cancer which is fully operable, however they have also discovered a rare heart condition ao they can't operate for another 3 months whilst Im on blood thinners

I can't take any anti inflammatories because they don't want to make my blood too thin

I have found that my ra is actually getting better on the blood thinners, Im not sure why none of this has been picked up anyone else in this situation with their lungs?

Im researching more chinese medicine to try to stop it metastasising whilst the blood thinner work

any tips greatly appreciated

[Norma_Back]

Three years ago I went into complete respiratory failure,stayed on ventilater for 9 days. Was told the RA had caused fibrosis in my lungs,after several tests. Was put on oxygen,inhalers,etc. I was actually planning my funeral! Now,I rarely use oxygen! So I really don't know what to think,but am beyond grateful! Was told recently that I had several spots on my lungs that were very worrisome, but was just gave an app to come back in 3 months... I am also taking remicade infusions n methotrexate.

[Luci22]

Hi, just read this post now, much later than originally posted. How are things going with your condition? Were you able to have the surgery? I hope it went very well if so. It worried me to read this and to think such things can result from RA. Can I ask what types of symptoms you had to bring this to your attention in the first place? I get the odd pain in my upper back - pokes, sharp, sometimes dull ache, and just last week I felt a heavier feeling in my chest and as though it was harder to breathe and take in air. I was still ok to breathe but it was almost feeling "heavy" if that makes sense. I had been contemplating asking my gp for an xray to check things over in my lungs - then I read this post so now I'm extra alerted to the idea.

Wishing you well.

[chavaudret]

hello

I had an operation in november for non small cell lung cancer and have recovered from that well, unfortunately there are a few cells left around the stump and 1 spot in my chest so I have to have chemo, I also have endo myocardial fibrosis , and perhaps pulmonary fibrosis in the back ground ,I have a clot in my lungs , I can't take NSAIDS as Im now on blood thinners, I think a lot of this has been caused by the RA medication

I will let you know how I get on

[2DOAon510]

How are you doing now ? I see this was 8 months ago already ! I hope all has gone well for you .

[mbd208 in reply to 2DOAon510]

Yes I also hope you are doing much better. I have rheumatoid nodules in my lungs and the pulmonologist called it rheumatic lungs. So I am on oxygen at night for sleeping and you know inhalants for during the day. It’s just so much fun isn’t it LOL

[DeeDee223]

Hope you are doing better!!

Please tell me how you found a good Chinese Herbalist?

I am desperate to find one!!