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Second opinion needed?
Hello, I’m 55 and was diagnosed with RA ILD with fibrosis about 4 years ago. Now I’m wondering if i should get a second opinion on my treatment.
I get PFT every year and my pulmonologist said they are good and stable. No numeric values though. My oxygen always stays above 95. I’m a bit short of breath when exercising, no cough. My CT has moved from probable UIP last year to UIP pattern this year with continuing honeycombing and traction bronchiectasis. Dr says no change in CT, but I disagree. I feel more SOB and fatigue. But I am no doctor.
My treatment includes 200mg Plaquenil daily, 1000mg mycophenolate daily, 12.5 mg methotrexate injected weekly, all prescribed by my rheumatologist. I’m thinking it is not aggressive enough to prevent worsening fibrosis.
When is it time for a second opinion?
Thanks for any insights, Laura
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5 Replies
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In my non-medical, but experiential opinion, YES. I was diagnosed with IPF/ILD in 2021. I went to a pulmonologist who was part of a practice. While he agreed I had IPF/ILD, he didn’t think it was necessary to go on anti-fibrotic drugs (ofev, esbriet). After 2 yrs and feeling somewhat worse, I went to a pulmonologist at a teaching medical school. He took over my care and said I should have been on anti-fibrotics since the initial diagnosis. I don’t know if you are treating with a pulmonary practice or not, but I suspect you are. It seems to me that doctors in practices. especially, those owned by a health corporation, (Bon Secours, HCA, etc) are under such pressure to see a certain number of patients, I’m not sure they have time to keep up with changing standards, etc. Just my opinion. Conversely, those doctors at teaching hospitals and medical schools are expected tp publish, teach and so forth. They really must be up with the latest medical info.
Long winded answer is yes get a second opinion and at a teaching hospital/medical school, even if you have to travel. You are young and need the best treatment available. Good luck.
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I think if you have doubts, definitely seek a 2nd opinion. I don’t know much about RA induced PF, but sounds like you’re getting treatment for the RA only. When I was diagnosed, my pulmonologist suggested I keep a notebook with all of my test results, so I always ask her for a copy of my PFT & 6 min. walk results so that I have a record & can compare the numbers from year to year myself. I can read & print the CT results from the patient portal & keep those as well. Best of luck!
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I agree with the 2 previous replies. Yes start an antifibrotic. Caveat – I’m a surgeon so I direct some of my care. In retrospect I started having symptoms in 2012. My brother died from ILD in 2013. In 2015 I had to stop playing soccer and underwent a cardiac workup which was negative except desaturation to 89% with maximal treadmill running. Cardiologist put it all together as probable ILD and eventually saw a pulmonologist locally in 2016 and then self referred myself to Duke and was started on Pirfenidone. I transferred to Brigham in 2019 as weather always interfered with travel.
I have had gradual deterioration in PFTs which I get biannually. I’ve tolerated perfenidone remarkable well. I’m now 72 and suspect I won’t go the transplant route. I do use a pulse ox which plugs into my iPhone (expensive made by Massimo which are the clinical ones used by hospitals). When I travel to Colorado my sats are scary low but I accommodate after several days to 96-97 which is my baseline at home at see level.
Take care. Travel to a big center and get sorted out. You don’t need to stay at that center if travel is an issue.
IRN
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Hi Laura, I too have RA induced ILD, specifically NSIP (my rheumy thinks its UIP but my pulm is pretty definite on the NSIP, I’m sticking with that as NSIP is better than UIP from what I’ve read). This journey began 3 years ago. I’m doing really well at the current moment, I douse portable oxy concentrator when I exercise or go on long walks. At diagnosis time I was switched from Humira to injectable Actemra (supposedly Actemra is the best for the lungs, or so my rheumy says) and I take 750 mg of Mycophenolate morning and night. I do not see any reactions to either of those drugs, my pulm says that OFEV would not work for me with NSIP. What do I know. Anyway, all I can say is if you go for a second opinion, please make sure the pulm is specializes in ILD. Good luck!
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Thank you for all the thoughtful replies. I have a doctor for a second opinion. He has great reviews and credentials. I’ll keep you posted on the outcome.
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