Methotrexate

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I have Lupus and Rheumatoid arthritis. My rheumy recently started me on Methotrexate. Here is my concern...

My dad has pulmonary fibrosis caused by Lupus and has never been on methotrexate. He is 58yo and doesn't have long to live. Watching his demise is heartbreaking.

Methotrexate can cause PF and other lung issues. My concern is that given my family history of dad having PF without being on this drug, that may make my chances of getting PF higher as I'm on the drug.

What have your experiences on methotrexate been? Any lung concerns? Thanks xx

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  • Posted

    Hello Amanda,

    I have been on Methotrexate injections since January 2016. I was of the pill form, but my body could not tolerate that very well. So far, Methotrexate has only provided benefits of reduced inflammation and pain from rheumatoid arthritis. I am also on Enbrel 50 mg injections, since November 2016, once a week as Methotrexate alone has not been enough to tame down my rather severe RA.

    I do however eat raw local honey every morning and every evening as a way to boost my immune system. So far, I have been able to avoid getting any colds now for over three years, even though I have been on immune system compromising medications for over a year. There have been many colds within my immediate family during this same three year period, but they all refuse to eat raw local honey.

    Take care and stay healthy,

    Don

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  • Posted

    Hi, I had pneumonia many years ago but have had several years ago (worked as a physiotherapist so regular TB checks) and no mention of any lung disease. However after 6 months of mtx I developed pneumonia and was admitted to hospital. The consultant said I had mild bronchiectasis and thought it was due to mtx. I stopped mtx and now I take a biologic (abatacept) I have had another episode of pnemonia this year so not absolutely certain if it was mtx, but it could be I think. Pulmonary fibrosis wasnt an issue for me. I fully understand your reluctance in view if your dads health issues, I would ask if there is an alternative for you, as you are likely to worry about it, which wont help either. Hope you get some answers, sorry you really have a double whammy with R A and Lupus.
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  • Posted

    Hi Amanda, I understand your concerns. I have been on Mx about 3 years, 2 years ago with Humira (Adalimumab) and more recently with Benepali (Etanercept). Over 12 months ago I noticed a 'silly' cough. Just there, not related to anything in particular. Anyway, to try cut a long story short CT lung scan showed some milld changes. 8 months after that (feb 2017) significant deterioration. Still coughing but non productive and getting a bit more breathless.?Mx stopped. Ended up with bronchoscopy showing some underlying infection so Benepali now stopped.? I am shocked though at the rapid deterioration. I never want to take Mx again. Just waiting for the flare ups. I don't know about anyone else but I feel increasingly frustrated. I know the biologics have been a major advance but it just seems we are expected to trial and error cocktails of extremely toxic drugs and yes I, for one, am pretty naffed off. So I don't blame you at all for being suspicious of the Mx. Sorry for the rant. I needed it!

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    • Posted

      Hi Carol, good for you to have a rant... you are so right, the whole thing is a shambles, I even asked my Rheumatologist if he would accept the same for his wife and he had the cheek to say he would....I bet he wouldn't! Even when I told him that the respiratory physician said it was caused by mtx hecsaid it was most unlikely, so I said "he is a RESPIRATORY physician" i know it seemed rude but thats not his training afterall. It is a game of making folk go on these cheap drugs for at least 6 months before they will even be considered for a biologic. NICE guidelines! It was possibly the worst 6 months I have ever had! It seems so unfairvwhen there are much better drugs out there which work, very frustrating indeed.

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    • Posted

      What shocked me most was the speed of deterioration. I've since read that the symptoms of over 80% of patients with Methotrexate related lung disease will reverse. Just hope I'm not one of the 20%. I just feel this disease is not particularly high profile compared to eg cancer and heart disease where so much effort goes into research. Yet it causes so much pain, disability and loss of earnings (important for the individual and their families but also for the wider economy) Anyway I'm ranting again. Sorry. But there you have my experience of methotrexate x

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  • Posted

    Hi Amanda, Firstly I am so sorry to hear of your double diagnosis and also for your Father. No wonder you are worried. I am on MTX, and have been for over a year now. I have blood tests every month to monitor any liver damage. I had a fatty liver before all this started so at a disadvantage from the get go. One day My Rheumatologist rang me the same day that I had my bloods taken to say that my liver was showing signs of stress and to reduce the MTX until it settled down again. This I did and am now on full 20mg again as it came down almost immediately.

    If you have faith in your rheumatologist ask them what the dangers are and be fully aware before you take them. I also ask for all blood results to be sent to me also and I have a spreadsheet of the results month by month so I can see how my liver is going. I adjust alcohol and food intake if its a bit high and it seems to settle back down.

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