I have RA with RA-ILD (Rheumatoid Arthritis Interstitial Lung Disease).
Today at my Rheumy appt. he put me on hold until he gets a report from my Pulmonologist as to what drugs I can take that will not play havoc with my lungs.
Just curious if anyone else has lung involvement. I never see anyone posting about it but from the mountain of literature I've studied, I know that RA-ILD is not uncommon in people with high positive RF titre at diagnosis, especially those who also have nodules.
Also curious to know how many of you with articular, inflammatory RA of the joints were advised to have a CXR/HRCT to rule out RA-ILD.
K.
I certainly don't mean to cause any unnecessary concern ( Lord knows this disease has enough crap to deal with) but people with high,sero-positive, inflammatory RA; especially those with articular nodules should have a baseline CXR and preferably a HRCT to see if this disease is effecting their lungs.
When I first suspected that I had RA, I was also experiencing an upper respiratory illness so my PCP blew off my joint aching complaints as a part of the URI. It was only weeks later, when the URI had cleared but the joint symptoms remained that I insisted she run tests, including a CXR to see what was going on in my lungs.
That led to a HRCT of my lungs which showed inflammation and fibrosis, which led me to a pulmonary specialist who diagnosed Rheumatoid Lung Disease. She explained to me that RLD can pre-date articular symptoms sometimes by years with no overt symptoms and that it's course is unpredictable. People who have organ involvement have a poorer prognosis than those who do not. Duh! So, I have to have a PFT (pulmonary function test) and lung CT every 6 months and am limited in my choice of treatments because many of them can induce lung problems as a side effect.
As opposed to RA caused fibrosis, RA nodules can be (and are) found in many major organs and are, for the most part, innocuous. Upwards of 40% of people with inflammatory RA are found to have systemic nodule involvement after passing and didn't even know it.
I should have asked about others with fibrotic lung disease as a consequence of RA as I'm interested in knowing what types of medications they are using to spare their lungs from dangerous side effects.
K.
Katalina -
There are a lot of ancedotal reports of lung nodules clearing up on Minocin. The MP people have a lot of info on it because it's got a lot to do with their protocol. I am not advocating their protocol - but I am looking into it. I just have some serious questions on the use of Benicar as an exponentiator.
http://www.marshallprotocol.com/forum37/3094.html
It's supposed to be a lot rarer for us; but I did find some links saying we have more lung involvement but nobody's looking there. Figures.
Pip
Hi Katalina,I'm new to this site but have had RA for 27 Yrs.I have 15 rheumatoid nodules in my lungs.Have had part of 1 lung removed but at first they thought it was cancer and it was thr RA disease if I would have known it back when I wouldn't have messed with surgery they flare up once in a while and just apply heat to my chest but they never really bother me that much.It doesn't scare me anymore.I also had the other lung operated on also which the chest cavity wall came apart from the methotraxate.Now I take nothing but tyenol for pain.I have also had 52 surgeries and will go through another one on Thurs.I suffer dearly but I keep my chin up and I'm 53.Good luck to you SandytKatalina,Gosh, reading these posts make mine seem so minor. Hang in there, get to feeling better soon!!
Phats
I have had RA for about 9 years. I was diagnosed with sarcoidosis in Oct 2006 after a bronchoscopy and mediastinoscopy showed nodules in my sternum and lungs. I get rechecked every 6 months and up till now there has been no change. Not sure what will happen when I go in March as I have been having more shortness of breath and faatigue lately, possibly due to the colder weather. Will have repeat CT scan and pulmonary function tests done then.
Here is our experience. Daughter started AP (Zithromax) and the same week went to the ped rheum to start mtx. They did baseline xrays (joints and chest) and sent us home without an rx for mtx.
Six weeks later, they called and said there was an "abnormality" on her chest xray, and she would need to see a pulmonologist to determine if it was safe to start mtx.
She had markings consistent with interstitial lung disease on the first xrays. But when they retook them six weeks later, after six weeks on zith, her lungs were normal.
Wow... I thought RA affecting the lungs impacted a very low percentage of people. I didn't realize it happened so often. This disease is such a bastard. (I apologize for the language, but it was the best descriptive word I could think of at the moment!)I wrote this post on 10/30 and was surprised to see it toward the top of the heap again.
I returned to the Pulmonologist for a 6 month spirometry and my inspirational capacity was a little lower than previous but otherwise all else remains unchanged. However, a spirometry is not a complete PFT nor is it in any way visually diagnostic of further fibrosis. I call it the "blow in a box test". Pulmonologist and I discussed the fibrosis in my lungs. I questioned how she determined that my fibrosis was caused by RA as opposed to scaring from old pneumonia, some other, long resolved lung infection, decades of smoking (3+ yrs quit now) or just plain idiopathic PF and she replied that the type of fibrosis she saw on my CT was not the same as one would see as a result of the conditions I mentioned (she explained it in much more medical detail) and in her 30yrs of practice at reading lung CT's, WAS, in her opinion, fibrosis caused by RA. Tough to argue that one. The only CXR/LungCT I had prior to my RA diagnosis was 8yrs previous so I have no clue how long the RA-ILD had been there before it bagan to manifest in my joints/tendons. I am to return in Feb.for a repeat of the spirometry.
We discussed DMARDS and their effects, specifically on the lungs. She informed me that if I chose to begin any DMARD, especially MTX, that I should call her so they could follow me monthly. She was very up front about the potential negative pulmonary side effects of RA meds in people who have concurrent RA-ILD.
I had done 10mos of extensive studying and inquiring relative not only to DMARDS, but to all RA drugs and how they can affect the lungs and other organ systems & I wasn't too thrilled with anything currently on the market myself but the pain in my joints and the tenosynovitis was more than I wanted to deal with, so heres what I did: I went to a third hand doc and got a shot of kenalog in my bad wrist. I asked my PCP for various strengths of oral prednisone. I began with 10 mgs. That pretty much killed the pain but the side effects were yuk, so I cut it in half at about the 4 day mark. I remained on 5mg/d for the next week and I was able to function. I then dropped to 4mg/d for the next 2 weeks to see if I could still maintain. That worked ok. I then reduced to 3.5 which was so-so and am now at 3.0 and the joint pain and tenosynovitis are back again. So...what I think I know thus far (trial period not long enough to determine long term efficacy) is that I can maintain and function with little pain at 4mg/d of pred. but don't know if I want to (or can) continue this as monotherapy forever.
I see the Rheumy in January. I'm hoping he picked up a few more tricks to put in his bag at that Boston Rheumy convention. God bless all of you who are so brave to take these medicines and the procedures that go with them. And please don't misunderstand my post. I am all for whatever works and feels comfortable for each individual. As for me, I am very frankly too scared to put any of these meds into my body at this point.
Thanks LinB for inquiring about me.
K.