Home Forums General Discussion Methotrexate and Lung Scarring

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  • #302536
    jasonjuul
    Participant

    Hi,

      About a year and a half ago my 14-year old daughter's Pediatric Rheumatologist abruptly took her off Methotrexate after her DLCO numbers showed decline from a recent Pulmonary Function test series. This is after she was on MTX for about 4 years.

      She was switched over to Cellcept at this time but the last several PFTs, which are repeated about every four months, continue to show decline in the DLCO of a few percentage points. She is now down to roughly 87%. Her Ped. Rheum. increased her Cellcept dosage to 3g/day from 2g/day in the hopes that this will arrest the declining lung function.

      I've been operating under the premise that it's her underlying disease (Mixed Connective Tissue Disease) that's responsible for the lung involvement but this morning I had a revelation. Could it be that the MTX triggered the lung involvement, which I suspect but don't know for sure is scarring/fibrosis, and that the process is continuing even though the MTX has been discontinued?

      I have an appt. to see an AP physician Sept 1st but I'm thinking that if the MTX kicked off this process, then trying to treat the underlying disease (the MCTD) probably won't succeed in stopping the lung involvement. Something needs to be done to stop the scarring process started by the MTX.

      I would be most interested in hearing your opinion on whether you think this angle has any merit. Even better, if you can point me to any research that addresses MTX and lung involvement, I would really appreciate it.

    Thanks,
    John M.

    #332761
    jasonjuul
    Participant

    In the spirit of God helping those who help themselves, I would like to post the following link and direct readers to the section on “Methotrexate-Associated Lung Disease” which is about 2/3rd's of the way down:

    http://www.hopkins-arthritis.org/physician-corner/cme/rheumatology-rounds/r16-rheumatoid-lung-disease.html

    I'm hoping the part about empiric antibiotics will convince my daughter's Ped. Rheum. to prescribe Minocin for her ahead of her AP doc appt. in Sept.

    -JM

    #332762
    Jan Lucinda
    Participant

    I have heard this complaint of methotrexate caused lung disease before.  Thanks for the link and good luck to you and your daughter.

    #332763
    Suzanne
    Participant

    I'm sorry your daughter is dealing with this.  Your ped rheum should know about mtx/lung involvement – my daughter had baseline chest xrays prior to starting mtx for that reason, so they had something to compare for any changes.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #332764
    Parisa
    Participant

    It could be the methotrexate and it could be pulmonary fibrosis rearing its head from the mixed connective tissue disease.  My husband has pulmonary fibrosis and has not only stopped the progression but reversed some of the scarring so don't despair. 

    N acetyl cysteine and zithromax have been crucial components to his lung recovery.

    #332765
    Kim
    Participant

    John,

    I really feel for you having to make these decisions for your daughter. 

    Lung scarring is also a symptom of Scleroderma, which is in the MCTD family.  Is she not on Minocin?  Cheryl's daughter, Jess, was 16 (I believe) when she got sick with SD with lung involvement and credits Minocin to a rapid turnaround.

    As I've mentioned before, Lyme Disease caused my SD as well as a laundry list of other auto-immune diseases.  Now that I've gone through Lyme tx, almost all of my SD symptoms are gone.

    Best wishes in sorting through all of this.

    kim

    #332766
    jasonjuul
    Participant

    Hello All,

      Yes, unfortunately I am all too aware of the Scleroderma component of MCTD and that there's this specter of lung involvement. I am hoping my daughter's Ped Rheum will be willing to prescribe an antibiotic for the possible MTX involved lung infection, sort of as a therapeutic probe. Furthermore, I hope that Rachael shows improvement in all her MCTD manifestations so that her doctor will give AP a more serious consideration. Six years ago he was adamantly opposed to AP. When I mentioned it recently, he said he would prescribe it but said he didn't think it would help. Progress of sorts, I guess.

      In any case, I have an appt. for my daughter to see an AP physician Sept 1. I hope at that time I can get her on antibiotics. I'm taking comfort from all the success stories here.

    Thanks for all the great advice.

    -John M.

    #332767
    Kim
    Participant

    John,

    My first and only rheumatologist is now my ex-rheumatologist for refusing to give me abx.  Luckily my GP was fine with it so that's how I got started.

    Take care…..kim

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