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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Painful breathing and SOB?


12-09-2015, 03:00 PM   #1
TMurphy
 
Join Date: Dec 2015
Painful breathing and SOB?

Has anyone experienced these symptoms while on Remicade? I have pain in my chest when I take more than a shallow breath. This also causes me to have shortness of breath, since it hurts to breathe. I have other issues, but this is the one that is having the biggest impact on my quality of life. And the doctors (primary care, rheumatologist, endocrinologist, pulmonologist, ophthalmologist, neurologist) all seem stumped. I don't know if it is related to Remicade at all. I'm grasping at straws! Any input would be appreciated.

Here's my background:
I've had uevitis (inflammation in various parts of my eyes) and optic nerve edema for the past 10 years. It got markedly worse about 4 years ago. The steroid eye drops I was using stopped controlling the inflammation. The doctors were worried I'd go blind if we couldn't get it under control. So I tried a couple of different oral meds. The only thing that worked was Prednisone. Of course, I can't stay on that forever, it causes its own issues. We finally made the decision to try Remicade. My first infustion was 12/26/14. Within 8 weeks all of the inflammation in my optic nerve (the worst part of my condition) was gone. It's stayed gone this whole year. And the rest of the inflammation is gone, too, with the help of eye drops. On September 5th, I was 5 weeks and 1 day post infusion. That day I abruptly developed severe chest pain and shortness of breath. I was convinced (by Dr. Google!) that I had pericarditis. So off to the urgent care we went. They quickly determined that all of my vital organs were fine and I had no blood clots. I've had many urgent care and doctor appointments over the last 3 months. I've had 3 infusions in that time, every 6 weeks. I've had an MRI, 2 CAT scans, multiple chest xrays, a lumbar puncture, loads of bloodwork, an echocardogram, multiple PFTs and more that I can't remember. But the chest pain and SOB are no better. I've also started having flares of very painful joints. They are painful but not swollen. The painful joint episodes can last a day or two weeks. They seem to have no relation to when I get an infusion. I was put on Neurotonin and it worked GREAT for a month. No joint pain at all. But now it's stopped working and the rhematologist won't up the dose. I'm also taking metformin (diabetes), levothyroxine (hypothyroid), propranolol (migraines), imitrex (migraines), Valium (anxiety), methrotrexate (20mg) and prednisone (5mg). I'm on Ultram every 4 hours to help with the pain (it takes the edge off) and Norco for when it's really bad.
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