You Don’t Know What You Don’t Know

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I’ve got something heavy weighing on my mind that I will talk to my doctor about when I go to see him this month, but that I’ll share here now. First, some background.

When I was a small, small child, I had severe Interstitial Lung Disease. ILD is a catch-all term for a systemic scarring of the lungs that leads to a decreased ability to take in oxygen. (I was the toddler with the puffed up cheeks from the combo of prednisone and oxygen, carting an oxygen tank behind me that was my height.)

They tried to find a reason for my ILD, testing me for everything, including AIDS, and even doing an exploratory lung biopsy. But they never did figure out what caused my ILD.

As inexplicably as ILD arrived in my life, a couple of years later, it left. I progressively regained most (at least 70%, and at times over 80%) of my lung function. I went in for annual checkups every year from as far back as I remember until about age 24, when they finally declared ILD a non-issue in my life. This is highly unusual. Many of the kids who were at National Jewish Hospital with me are no longer here, and my parents were told to prepare for my death when I was being treated and seemingly not getting results.

ILD has always hung over my life like this mysterious legend. Much of it happened before I was old enough to remember, but the annual check-ups, and the way it affected my parents and sister were impossible to avoid or forget.

So I was a little surprised to get back from Sundance to the news that my mom’s friend had died from ILD and that her husband believes it was caused from the chemotherapy she received years ago for breast cancer. Were ILD and chemo connected at all? I asked Google and found out that not only is ILD connected with chemo, it’s connected to low-dose chemo. As in the low-dose chemotherapy in the form of methotrexate that many of us RA patients use as a treatment.

The stats are pretty scary. In RA-land, it seems that ILD is so common it has its own name: Rheumatoid Lung or Methotrexate-Associated Lung Disease. About 40% of RA patients will have extra-articular disease involvement, as in RA will effect their lungs, cardiovascular system, blood, etc. About 18% of RA patients have lung involvement and, according to one article, ILD. For those living with ILD and RA, the survival mean is a low 3.2 years. (all these fun facts are from this article:

The article went on to say: There have been questions posed as to whether methotrexate can predispose to lung disease or whether patients with pre-existing lung disease who are put on methotrexate will develop lung disease thereafter.  There’s no evidence for either of those.  The fatality rate of patients with proven methotrexate-associated lung disease is around 17%, and re-challenging those patients is not usually recommended. It’s thought that re-challenging patients with methotrexate may somehow cause a stronger secondary response.

This is reassuring…is there a correlation or not?? There’s no evidence that methotrexate causes ILD (whether pre-disposed or not), yet there are patients with “proven methotrexate-associated lung disease”. Huh.

Here’s what another article had to say about it: ‘Methotrexate lung’ can occur when methotrexate is used to treat rheumatoid arthritis or cancer…Most chemotherapeutic agents can cause ‘chemotherapy lung’, acute ILD with the pathological features of DAD. Incidence is estimated at 10%, although it is difficult to obtain accurate estimates due to the complexities of diagnosis and the small patient numbers involved.

Here’s another study about the correlation between methotrexate and lung disease:

Well, great. I feel like my rheumy could have at least mentioned this! Should I be worried since I have a history of ILD? Was it such a non-concern, my rheumy didn’t even bother to bring it up? Should I try to find something else instead of MTX, even though I seem to be getting results?

Does anyone have any experience with this or knowledge about the correlation between methotrexate and lung disease? All thoughts would be much appreciated!

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  1. #1 by Marianna Paulson on February 5, 2013 - 4:49 am

    I don’t, but man oh man, that absolutely sucks.

    The bite vs. the cure.

    My only advice is to work on not worrying about it; a Herculean feat, at best. I do know the more you worry, the worse it gets – kind of like “finding what you are looking for”.

    Talk with your rheumatologist and go from there.

    • #2 by My RAD Life on February 6, 2013 - 6:58 am

      Thank you. That’s basically what I decided to do as well. I’ll be seeing my rheumy next week, so I’ll be sure to question him about the relationship MTX and ILD. I’ll keep you posted!

  2. #3 by riceeyd on February 6, 2013 - 6:58 pm

    My rheumy checks my lungs with every appointment. This helps to ease my mind quite a bit.

    • #4 by My RAD Life on February 6, 2013 - 8:30 pm

      Really? Mine hasn’t done this. Is he scanning them or just listening? This would ease my concerns I think…

      • #5 by riceeyd on February 6, 2013 - 8:33 pm

        He just listens. He was up front about the potential lung problems with MTX so he does a quick check every visit.

      • #6 by My RAD Life on February 6, 2013 - 8:35 pm

        I wish my rheumy had done that and been upfront about it! I’m glad to hear that yours is, because now I know it’s not a ridiculous expectation (sometimes I’m not sure, you know?). I’ll talk to my rheumy about this when I see him next week.

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