Rheumatoid Arthritis Support Group

Chest x-ray shows a small area of "interstitial scarring" so new Rheumy prescribed a cat scan of my chest and a follow-up appointment with a pulmonary specialist. He said he suspects rheumatoid lung but there are other things that can cause scarring, like smoking.

He also told me that sometimes the drugs they use to treat the arthritis will resolve the lung problem, but we may need to change medications because of the risk of some kind of killer allergic pneumonia in Methotrexate users with vulnerable lungs.

Major anxiety. Having trouble sleeping.

Has anyone here dealt with this?

Hi kym

Glad you will be seeing a specialist. My rheumy and pulmonologist work closely together.

I see my rheumy every 3 months and pulmy every 4 months.

Though my lungs are good I had a bout of double pneumonia, 2 years ago, after taking Enrel (yep, the kind bios cause) and flu/pneumonia last year. So, we are being very careful watching for the first sign of any problems.

I thought RA drugs were notorious to cause lung damage. Hmmm?

Good luck dear

Hi bits. Thanks.

At the Johns Hopkins site on RA they say that people with interstitial lung disease and RA live about 3 years beyond diagnosis. That upset me so much I put in a call to my rheumy to see if 1. this is what I need to worry about or 2. he can talk me down. I couldn't get through the request with the nurse without breaking down in tears.

So anyway while waiting I've cleaned my hidey hole here in the basement and have been scouring pubmed, and came up with (among many other things):

http://www.ncbi.nlm.nih.gov/pubmed/18227362

Which starts off with:

"Early detection and treatment for interstitial lung disease (ILD) in patients with rheumatoid arthritis (RA) may ameliorate disease progression."

This helped.

I also get the impression from reading that my case would be considered "preclinical" since I don't have symptoms. The 3 yr prognosis is when people have fibrosis in their lungs. But I'm sitting here waiting for him to call. I want to know exactly, and not in dumbed down terms, what the x-ray shows, how big it is, etc. I mean, what am I dealing with here?

Bits, I had pneumonia with pleuritis back when I was about 30 and it was awful. I'm sorry you've gone through that on top of the other crappy RA stuff. And from my reading I'm thinking that maybe everyone with RA should have their lungs checked for early signs of problems.

I feel like I'm crashing into a brick wall after celebrating a week of zero flares. I may have to knock myself out with a Vicodin to stop my brain from going over and over this.

Hubby and I celebrated our 9 month anniversary on Saturday. I had a pain free day and we got out in the garden. I pulled weeds. I vacuumed. No flares. It would suck if I have to stop taking the Methotrexate, since I seem to tolerate it just fine, and it seems to be working.

Kym, I can understand why you'd be terrified, especially after reading some of the gllom and doom writings about the condition. However, remember that many of them are just that... gloom and doom worst case scenarios. It doesn't mean that you're exactly in that situation. Try to keep a positive thought, and wait to hear from your doctor. If there's something like that to worry about he would let you know, because he wouldn't want you so sue the pants off him for not telling you.

We'll keep you in our thoughts and prayers, and hope that all is not as bad as you're feeling it is. <hugs>

Hi Kym

hang in there and let the smarty pants pulmonologist do her thing. i've had pnuemonia as a constant since birth as a premie. but as the pulmonologist looked at me today he is thrilled that I have bounced back from a collapsed lung last month and pneumonia 3 lobes. on top of the pneumonia in november. as I looked at the cat scan of the week I was admitted the bacterial infection was everywhere. i vision that it is disappearing fast. and my oxygen sats are up to 94. what more could I ask for? the pulmonologist said he rather see me on mtx and preventing as much deformity and pain as possible and he watches me closely. when I was in the hospital and couldn't breath i wanted to run away from all ra treatment. when they are pouring that sulfamedrol stuff into a port you get bravely something or other. but as soon as I could breath without oxygen, and the iv antibiotics kicked in, and there was no more steroid and I flared i wanted it again so i could move. so the specialists know it's a combination of all potential evils to obtain a good.

your lungs are probably so much stronger than you think. ask for the final sentence on your lung x ray. the final sentence on your lung cat scan. your oximeter number? your pulmonary function test results, those breathing and computer things? your numbers? how do you feel when you walk a mile on the treadmill? are you short of breath? can you blow out all the candles on someone's cake .

vision your lungs real strong and amazonee and hang in there.

Ros

Hi guys. Just woke up from a very long nap. Doc did not call. My guy came home and, as usual, he's my rock. And now reading your responses I'm really getting some perspective. Karen, there is a calm about you that washes over me like a cool breeze. You are right - that stuff is worst case scenario and I can tell myself that, but it doesn't work as well as someone else pointing it out, so thank you. Ros, wow you've been through quite a bit recently. Yes, I can blow out candles and I can climb stairs w/o getting winded. Walking - don't much lately but I've got a script for physical therapy for my lumbar stenosis so I'll let you know about that - soon I hope! I hear some defiance coming through in your post and I like that attitude.

"vision your lungs real strong and amazonee and hang in there." Gonna do it. Thanks, everyone. I'm out of the rabbit hole now.

I too have lung issues that have put me in the hostpital more than once, but Im a little luckier than the rest. I havn't had anyone tell me there is anything seriously wrong with my lungs other than the fact that I have weak lungs. I try not to think about it too much cause the more I obsess about all the bronchitis that I get and massive asthma attacks that I get the more likely I will actually get sick it seems. I gotta take my asthma inhalers to help keep my lungs from quitting on me, and Im allergic to albuteral so I got all kinds of expensive steroids I take to help. My old one has been discontinued and now I got Atravent-don't think I like it much but you gotta trust the docs and pulys at some point. Just don't forget that if your on inhalers they count as a medicine too, im always forgetting about them.

Hope your results come out for the best.

Alicia

Update for you angels who care: Doc called this morning and I said I need to know more about this spot on the xray, and he cut me short-- No, no spot! Just what looks like some inflammation, but it could be as simple as you not having taken a deep enough breath when they took the xray. So I said to him, I don't need to worry about dying in three years? And he said No! Then he said to keep in mind that what I am digging up is the worst case scenario stuff (Karen called that one and I guess we all agree then...)

So, Dr. Rosenbaum and RA'ers at MDJunction: Welcome to my anxiety disorder. Support makes all the difference - just getting grounded from the human connection helps. Having info is empowering, though, and there's plenty around here.

Claustrophobia lung scan w/IV contrast Thurs afternoon. Ahhhh.

Hi Alicia!

Yeah it sounds like your Achilles heel is your lungs. My husband had asthma, but since we've been together the past three years, he has only had to use an inhaler a few times. Thank you for your kind thoughts and sharing.

Well thats wonderful that the results came out with good news. Hopefully it stays that way. Are you just doing a more in depth scan on thursday or are they just doing a second scan to be sure? Good luck with your doctors appointment!

Alicia