Pulmonary Fibrosis - methotrexate

[Roai]

My mum has just been diagnosed with pulmonary fibrosis. To start with we were very oblivious to the disease but after a lot of reading I now understand what it is and it has filled me with fear. More so than her. I am 24 and can’t imagine being with out her.

She has suffered from rheumatoid arthritis for many years and this past 8 years had been taking a drug called methotrexate - they think this is what has caused the PF. She has been taken straight of the drug and will be under going a lot of tests etc this next few weeks. I was given this page to help find support from others who suffer or who have relatives/friends who suffer. Is there anyone else there that has been diagnosed with PF due to a medication? I would really appreciate to hear from anyone it is a hugely upsetting time and the uncertainty is really taking its toll.

Thank you

[sassy59]

Welcome to HU Roai and I’m so sorry to hear about your dear mum’s diagnosis. I hope you get some replies soon and just want to wish you well and hope your mum will do as well as she possibly can.

Thinking of you both. Xxxx

[Roai in reply to sassy59]

Thank you for your kind message x

[Hidden]

My RA came on nearly overnight. Joints so sore I had to lift my legs to get into my car. My GP referred me to a rheumatologist & he promptly put me on methotrexate. Within four weeks I was getting short of breath I was told to immediately stop the med & see a pulmonologist. That is how I found out I had inherited alpha one antitrypsin deficiency genetic disease. So the methotrexate made my lungs worse rather rapidly.

[Roai in reply to Hidden]

Thank you for replying - i'm sorry to hear but glad they took you off it and have found the underlying problem. I hope you are coping ok!

I find it so strange after 8 years of it letting her be almost pain free that this has happened so suddenly!

[Ergendl in reply to Roai]

These things can happen with medication. I took the NSAID Naproxen for several years without a problem. Then I went on holiday to Greece with a friend, and the first day in the pool, she told me I was so covered in bruises I looked like someone on a respite break. I stopped the tablets immediately, and the problem went away.

[Tiaposy]

Hi Roai. My husband has RA but stopped methotrexate over a year ago. He was on Benipali injections for RA (had a lung x-ray a year ago which was clear) but last week was told (via hospital discharge notes) that he had this awful disease. My once fit husband can now hardly breath and he thinks he will be better soon.

I see your post was 5 months ago & hope you have had some answers & help in this time.

[Caspiana]

Hello Roai . 👋

I totally understand your fear. I have had Rheumatoid Arthritis for over fifteen years. I was on Methotrexate for all those years. I was diagnosed with the lung disease Bronchiolitis Obliterans almost six years ago. Initially they did mull over the possibility that Methotrexate caused my lung disease, but in the end they came to the conclusion that it was in fact the RA that had caused it , not the medication. As you already know, RA is an autoimmune disease. It is known to ravage the joints , highly inflammatory causing erosion to the joints and severe pain and fatigue. But that's not all it does, it can also attack our other organs and lungs seem to be a favourite. According to the John Hopkins arthritis centre "A number of pulmonary manifestations are associated with RA. The most common is interstitial lung disease (ILD) which leads to pulmonary fibrosis (PF) during which the lung parenchyma is involved".

In fact when I was first diagnosed with RA one of the first things the Rhuematologist told me was, the possibility of lung disease down the line caused by RA.

To be very honest, I think there is an extremely fine line between Methotrexate being the cause of lung disease and RA being a manifestation of lung disease. Now the important thing is for your mum's RA to be well controlled to try and minimise more damage to her lungs and for her to be under a Rhuematologist and lung consultant. She needs to be as mobile as possible to keep her lungs as healthy as possible not to mention her joints. And she needs to be a healthy weight. Do you know her current lung function? It is wonderful that they are doing testing. Hopefully she will get a contentious doctor who can come up with a good management plan.

Don't be afraid. Us mums are tough 💪 birds. You just need to keep supporting her.

Sending very best wishes,

Cas xx 🙋🐕💕