ra/ild

[philvaughan]

hi people is there anybody else on here with ra/ild caused by meds ?

[helixhelix]

If you put ILD in the search box top right you'll get previous posts on the subject.

But RA can cause ILD, so not sure how precise doctors can be about whether caused by the disease or the drugs.

If yiu have it I hope it is well managed.

[philvaughan in reply to helixhelix]

thanks for replying I have ra/ild diagnosed by the royal Brompton ive had all the usual meds for ra which all went badly wrong eventually having rtx infusions which worked well for the ra but unfortunately made my lungs worse now not taking anything other than steroids. was hoping some one else may have had similar problems to exchange thoughts

[Simba1992]

Hello,

I am sorry to hear about your difficult situation and I am sure this may be a worry among many taking mtx, especially those with lung issues. I am not one of them but wanted to share my thoughts with you after reading your post.

The toxic effect of Mtx on lungs is still a question of contraversy. If you look at research sponsored by Pharma or Rheumatology the effect is very much downplayed whereas there is a worry among doctors that specialize in pulmonary disease that the effect of mtx are perhaps not taken seriously enough by rheumatologysts and the followup is often not as efficient as it should be.

Like with all RA meds there are side effects. Mtx affects many of our organs and we all have a individual history what organs are working well and what may have issues. When Mtx is persribed the rheumies are aware of the meds pulmonary and hepatic effects and the patient is tested to see what the situation is with these organs. If you have a history of lung problems the risk for pulmonary complications is higher and the risk of developing ILD is higher even without mtx. So you need as a patient to be aware of the risk you are taking and always insist on close followup. I do not know your history and your docs may have done everything right and you still had bad luck. I do hope you are getting good help..Simba

[Gigi71]

Hi, I am currently being tested for ILD, had a high resolution CT scan in November and breathing tests. I saw the chest consultant in October and the chronic cough I have he believes is related to my HH, had this for 2 1/2 years now. Get breathless on excersion. My 2016 CT scan shows lung scaring on the left lobe, various X-ray show white opacity and a nodule.

I do know from my physio I saw in late December that I have some fibroses, but didn't elaborate, I have crackles in my lower lobes. Had RD for 33 Years. Been on MTX for two and half years. My rheumy believes my chest problems are RD related. My chest consultant is currently away and my appointment for Monday was changed last year till Feb 25th. So await results then. Never smoked. Seems very low key to me, when what you read is serious. X

[Gnarli in reply to Gigi71]

Ok heck, Gigi. That's a nasty situation. I'll keep everything crossed for you

[Gigi71 in reply to Gnarli]

Dear Jan, thanks for your good wishes, just another add on! I'm hoping only mild at present. Hoping you are feeling a little better. Wishing you a better New Year. Take care. Xx

[Mmrr in reply to Gigi71]

Best wishes Giggi71 I hope all turns out to be well.

[Gigi71 in reply to Mmrr]

Thank you Mmrr. X

[hawker955]

What is ILD? IL-disease presumably but what do the I-L stand for please?

Interstitial lung disease is my best guess but I haven't seen this referred to before.

Thanks.

[Gigi71 in reply to hawker955]

You are right. It's an umbrella term for a large group of disorders that cause lung scarring (fibrosis) . X

[hawker955 in reply to Gigi71]

Thanks Gigi, if you see my background you'll see why I understand the pathology-terms but had just never come across it as an complication of RA, other than lung fibrosis being a potential side-effect of methotrexate-treatment. Not nice! Thank you for the clarification all the same. Best wishes.

[Gigi71 in reply to hawker955]

The start of my lung changes pre-dates MTX, whether this has made matters worse, I still don't really know. Because of the long wait to see the respiratory consultant, it was hoped I may have had results at my last rheumy appointment. I only saw a registrar this time and he said RD can attact the lungs and he felt this was the problem. Humira has worked well for me in terms of my general RD. I am also on the British Lung Foundation site and RD can be one of the causes fibrosis. So I still continue to wait. X

[sheels6726]

Crackling in my right lung breathless I had tests at hospital and was advised to replace methotrexate. Could be the cause. I do not take it now but the damage is done. Wish I had taken more notice of side effects of the lungs.

[TheBoys in reply to sheels6726]

Hi,

I hope this is sorted for you.

Can the effecrs of the lung damage be reversed?

I am seeing my Rheumatologist this week and he wants me on methotryxate.

But i am reluctant. I had sepsis /pneumonia two years ago. Twice a year I end up on antibiotics for lung infections. I had my chext xray before Christmas and it showed another infection in the left lung

When I hear stories like yours, and read lots of posts - i defo dont want methotryxate.

Paul

[Simba1992 in reply to TheBoys]

I think you are very right in being apprehensive. Have you thought about consulting a lungspecialist before talking to to your rheumy? At least this way you would get more facts. Good luck. Simba

[philvaughan]

before taking mtx you must have lungs checked to make sure they are up to it its normally the first med offered