I've been debating for the last few days whether or not to start this thread because I don't want to freak people out the way I just was, but in the end I decided information is strength and everyone needs to know as much about MTX as possible. Some of you may already know about this, but I didn't. I was very aware of many of MTX's dangers, mostly of liver problems, but an article in my local paper threw me a curve. A woman was requesting financial help from the community because she needs a lung transplant. Her lungs were scarred and blistered from MTX use for her arthritis. I was stunned and did some research. Apparently this does happen on occasion, but it's not common. Well, it doesn't matter how uncommon it is if you're the unlucky one to have pulmonary fibrosis brought on by MTX. I've already eliminated liquor to help my liver and now I think I'll have to stop going to my local Elks lodge for weekly dinners because the smoke eater is not totally effective and I no longer feel I can afford any second-hand smoke exposure at all. Am I over-reacting? Have any of you been given information from your doctor with regard to this risk to your lungs? MTX works well for me and I feel I have to stick with it as the lesser of two evils, but is it really? Do you alter your life style with relation to your lung health because of MTX or things you've been told by your doctor?
I called a friend whose been on the injectible for 14 years and does have some lung issues but didn't think it was the MTX. She was glad to have this information to ask her RD. I hope this will be helpful to others who may not know about this risk, small though it may be.
Sorry for the long post...thanks for reading it. This whole lung business just freaked me out.
Jesse,Jesse
PF is a rare but serious side effect of MTX. That is one of the reason a chest x'ray should be done prior to beginning MTX and periodically, depending on your own health situation.
No medication is going to be without risk and only you can wiegh your benefits vs the risks. You should probably start with your doctor and an assessment of the condition of your lungs
And yes I was told about the potential lung issues before starting MTX. I was on it for over 18 years most of the time at a high 27.5 mg/wk with no resulting problems
Yes I was told. I ahd the chest x-ray and was given the warning signs.
My Dr. was very clear with me that I had to contact him if I had any breathing problems. He said other Drs often think it is some other problem, mistreat it and then you end up in bad shape.
Hi, I agree it is important to let people know (without scaring them) everything we can about these meds. I'll ask my doctor and think about chest xrays. Thanks, LyndaThe bad thing about pulm fibrosis is that once you have it, you own it and it
I know that an ER doc last winter did a lung CT on me. He said there is a lung condition caused by PA, and I don't know if that is the same for RA. I couldn't for the life of me get rid of pnuemonia this spring and that is why he took the CT scan. I recently had lung pictures because of nodules on my ribs, both sides, and my lungs are fine. I guess for me it would be hard to tell what would be from the meds, and what would be from the arthritis itself.
It can go away. It's ancedotal evidence that for people on AP their fibrosis gets worse before it gets better. There are posts about people with before and after X-rays. I am assuming there is a 'point of no return', tho.
Running a quick search you can see the 'herx' part of the 'getting worse before getting better.
It looks like UCLA is in the middle of a 48 week trial about Mino and how it stops the blood vessels from growing and delaying IPF.
http://www.lung.med.ucla.edu/clinicalprog/ildtrials.htm
There are more articles out there about how this trial is supposed to show can stop or undo more damage.
Pip
Well, it looks like one more thing my RD doctor never did. Never talked to me about lung problems and never did an X-ray. I'm really beginning to wonder about him. Many of you seem to be getting better information and advice. I have to admit, he was right on with the meds he prescribed, I have gotten better, but at what cost? He should be talking to me more....telling me more.
Those of you with the good doctors who actually talked to you about the lung issue, did they give you any specific advice on how to protect your lungs, other than the obvious "don't smoke?"
Oh, and I also learned that the antibiotic nitiofurantoin can also cause PF and is often used to treat urinary tract infections. That's one I'll be sure to tell my PCP to never give me since I get bladder infections periodically. Please take note of that if you didn't already know it.
Jesse -
While I can't prove it, I suspect that the PF from the nitiofurantoin will reverse itself with enough time. It's a classic thing with most of the antibiotics - get worse (sometimes a LOT) then get better. Of course, most people are not willing to take the risk.
Pip
Jesse,
I was warned about this by my rheumatologist. She requisitioned Chest x-rays and blood work ( liver, wbc, rbc, platelets etc.). I was given the mtx script but told I must not have it filled until she notified me about the test results. If x-rays were clear and liver enzymes normal, then I could start the med.
My dr. also gave me the history of mtx... that it was first used ( at higher doses, of course) as a cancer drug, and she also gave a rundown of all the side effects... the common, not so common and the rare. I knew these before hand because of web searches and the arthritis forums, but it's comforting to know that my dr. makes sure her patients are well informed.
I'm reading a great book called Rheumatoid Arthritis: Plan to Win. It recommends that "if concern over side effects is present for you, here are some steps you can take to address the issue:
Koehn, Cheryl, Palmer, Taysha, & Esdaile, John, MD (2002). Rheumatoid Arthritis: Plan To Win. New York: Oxford University Press
Koehn et al also suggest the following questions:
(page 58)
Sorry this is such a long post.
:)Judy
I was warned about the effects on the lungs by both my RD and GP. I developed cough a few weeks after starting MTX and was taken off it after showing no response except cough! I was meant to be working up to 20mg, with 4 weeks at each dose increase, but only made it to 12.5mg.
I've since changed RD's and my current RD wanted to try MTX again but said if I developed cough the first time, even with clear chest x-rays, the chances were it would get worse trying a second time.
Judy, that was a great post, thanks for sharing that information. And I want YOUR doctor.
Pip, you may be right about the PF reversing itself eventually, but that's a risk I'm not willing to take unless there is no other antibiotic available and I know that's not true. Why go there if I don't have to?
It's become painfully clear to me that if I stay with my current RD I'm going to have to be even more vigilant that I have been since he's not very good at communicating with me. I hesitate to fire him because there is no RD in my area and I had to get special permission from my insurance carrier to even see this guy. Oh well, I'll deal with it, with your help. Thanks everyone.
Jesse
Here's a link you might find helpful. It was very useful when I was searching for a family practitioner for my daughter. It was nice find out which drs in my area were rated highly for their communication skills and empathy.
Jesse,
I understand. It's hard as heck to accept the idea of herxing and getting worse before we get better. Most people wouldn't go there at all and switch antibiotics.
Of course, when I get my next pneumonia herx I'm going to do it the way I talk about. LOL Either I'm crazy, or I'm a statistical study of one.
:-)
Pip
Thanks Judy, I'll check out the link.
Pip, you're a trail blazer. Maybe you'll go down in the medical journals some day!
I'm hoping to ride GoGo and JSNM coattails to Oslo on the study of Fizziology!
:-)
Pip