Methotrexate & Intersatitial Pulmonary Fibrosis

Rheumy is pretty sure it's the methotrexate that has caused the lung disease, but is unable to tell how bad it is. I have to go for a CT scan and a lung function test - he marked it all as Very Urgent - I'm scared now! He said that I should get the test within 3-5 weeks!!

just have to wait now - 3rd Oct for lung specialist, lets hope he has a bit more info!!

Anybody with a history of this or knows someone who's had it, I would love to hear from you.

I have been treated for last year on Sulphasalazine tabs but I also got a diagnosis for COPD in the lungs. I think there is a connection with the illness and it attacking the lungs from what I have read and indeed other organs causing inflammation in various organs including the Heart / Aorta. I often used to find if I caught a cold and it went to my chest that it would run on much longer than ordinary folks colds. Also I have stopped using [b:35675e0954]TALCUM POWDER [/b:35675e0954]after reading concerns about it on the internet where it is suggested to cause problems similar to asbestos !!!!! It is also thought to cause cancer in the ovaries of women. I used Talc since late 1970s till recent and based on what I read I will never use it again! However the reports I read on PA suggest it does attack the lungs in some people causing inflammation and damage. Hope you are not too bad.

my husband has just been diagnosed with PA. We ase still in shock. would love to know how things have worked out for you

I had something very similar occur to me, but it didn't take 5 years to come down with it. I was started on Methotrexate (MTX) in Aug of 2010 and slowly titrated to 25mg once per week. The last week of December 2010, I went to my GP on 29 December, because I was experiencing a burning sensation in my lungs along with breathlessness. My GP took x-rays and put me on a strong antibiotic because the x-rays showed nothing wrong. I spoke to my rheumatologist later the same day as well who advised me to watch myself very closely as things could change rapidly. By Sat. 1 Jan. 2011, I felt like a load of bricks had hit me. So, my roommate rushed me to hospital and when they took my O2 sats they were 57% and should be in the 90% range and when the x-rays came back I had double pneumonitis with 2/3 of one lung being affected and 1/2 of the other lung. By day 4 in hospital I went into resipiratory failure and then respiratory arrest which led me to being intubated and put on high dose steroids. My final diagnosis was MTX interstitial pneumonitis. It took about 13 months for me to totally recover. I was lucky that there was very little scarring or damage to my lungs. In fact the docs in hospital expected me to lose 50% of my lung function and as of February of this year my pulmonolgist released me and advised my lungs were functioning within normal parameters. However, I still occasionally loose my breath quite easily. Therefore, I am sorry to hear your troubles and hope that you can regain a good portion of your lung capacity. Its no fun not being able to breathe.

Didn't realise that anyone had replied to this thread!

I am doing really well, thank you.

Thankfully the pulmonary fibrosis caused very little scarring on my lungs, and coming off the methotrexate and leading a healthy lifestyle, is not causing me any problems.

I was discharge from the lung specialist in January. He doesn't for see any lasting effects...except I now have asthma...I can handle that! I was in such a bad state when I was first diagnosed, the thought of not watching my children grow up was terrifying!

I have since had Hip Resurfacing done on my right hip...metal on metal, which is causing me a few problems...it has been on the news recently with regards the dangers of metal toxicity...which I have...so they are looking at replacing the hip completely. I am going in for a complete hip replacement on my left hip in 3 weeks and can't wait! I expect to be running the marathon in a years time lol.

Life is good, PA is managed with Anti-TNF injections (Humira), I am watching my gorgeous girls grow into beautiful young ladies...the eldest took her first driving lesson last week, was fab to see. We have just come back from a fantastic 3 week holiday to Australia.

Onwards and upwards as they say

I hope you are all doing well and your drugs are under control.

Hi Lisa

It's. It's been a while since you write about your MTX lung problem. I hope you are fine. I was also diagnosed with IPF as my lung scan shows some scars. I m so scared and even thought my consultant like me to reduce the methotrexate from 10 tablet weekly to 8 , but I just can't out even one more tablet in my mouth. I wonder how you managed your condition. Thanks.

Hi Lisa...how are you going now?

I've just started methotrexate for Lupus and Rheumatoid arthritis. My dad has pulmonary fibrosis from Lupus - without being on methotrexate. So I'm worried being on the drug given that dad has PF without ever having taken it.

Hi Lisa,

You have my sympathy. I am also a victim of methotrexate as are 8 out of 10 who use it. I am unfortunate in that I ended up with fibrosis within 3 months of going on it. My specialist at the time convinced me that I had Rheumatoid arthritis and insisted that I go on methotrexate.

I dont have rheumatoid arthritis but thanks to modern money making meds I am in the late stages of fibrosis.

I have tried many paths in my serch for a cure or something to delay the enevatable but so far to no avail. I am trying out something at the moment but it will take weeks to see results ( if any ) fingers crossed.

The only advise I can offer is stay posative and keep going and tell as many people as you can about your situation then some where along the line some one will challange the drug companys about this Highly Dangerous drug and force the Dr's to tell patients the facts about this and other drugs.