I have decided to self-diagnose myself based upon various sources: the interweb, my friend Trisha who is an amazing researcher, my symptoms (or lack there of), and findings from the Vancouver pathologist.
Throughout this entire journey, we have struggled with the unknown. Mostly because there was no unanimously agreed upon disease from the lung biopsy surgery. The pathologists here, three of them, indicated there were “signs of vasculitis”, but they couldn’t/wouldn’t make a definite call, one way or the other. Since the beginning I was also told that another option for what was ailing me was COP, or cryptogenic organizing pneumonia. The name is misleading, as it really isn’t pneumonia in the sense of an infection. But it affect your lungs (obviously), and cryptogenic means that the cause is unknown. Ooooooo…..
Lucky for me, both COP and vasculitis are first treated with steroids, which is why we started on that medication right away. But since the vasculitis is a known autoimmune disease, additional medication would then be added as the steroids are tapered, with the idea of stopping your body attacking itself again. These are the super scary drugs I didn’t want to take. Which is where the Vancouver specialist came into play. He was recommended to me by an old friend through community theatre (THANK-YOU). This doctor’s father “found” a specific type of vasculitis, and it was even named after him, so he knows his stuff. He was amazing. Super receptive. Offered to look at my files immediately. And once he had my information, it only took a few days for him to get back to me. In his opinion, I do not have vasculitis in my lungs. He thinks my biopsy shows COP. He also agreed that my kidney biopsy was normal, although my bloodwork that are indicators of autoimmune diseases are confusing. Which I knew from previous rheumatologist appointments.
There are two names for this rare disease: COP or BOOP (bronchiolitis obliterans organizing pneumonia). BOOP sounds neater. Say it out loud. Don’t you agree? So because of all of this, I am self-diagnosing myself wth BOOP!
He stressed that he couldn’t give me a definite diagnosis, but did say that minocycline has been shown to cause many types of lung diseases, and is the most likely culprit.
So this morning, I met with my rheumatologist and shared all of this with her. She was on board. The plan is to continue reducing my prednisone by 2.5 mg now and just see how I feel. If I can go down 2.5 mg every two weeks, without any symptoms returning or new symptoms, then I am to just keep reducing. So next Monday I will go from 10 to 7.5 mg a day, and keep my fingers crossed. This will be the most likely time that symptoms may return, as we get loooooow, so I am focusing on that not happening. I will now do my bloodwork once a month and see her again in 3 months. We also talked about my supplements. I am on super high doses of calcium, to counteract the bone density sucking of the prednisone, but like SUPER HIGH, because it was never reduced since I started at 70 mg. In her opinion, I should be getting enough calcium in my natural diet, as opposed to supplements. But said I could reduce my daily supplement by 4 times, as I normally don’t eat a lot of dairy. She mentioned a study that linked heart disease and stroke to high doses of calcium, which Trisha also noted!! And she also told me to increase my vitamin D from 1000 to 2000 units a day. She likes vitamin D supplements better than calcium.
So, I see my lung doc again in a couple of weeks. The lung capacity test can show signs of any potential concern as we decrease the prednisone. Bloodwork monthly. And then see the rheumatologist and kidney specialist in the summer for follow-up.
I am very hopeful I have BOOP. The chances of reoccurrence are there, but much less than had I self-diagnosed myself with vasculitis. And the unknown still encircles me, but at least for right now, there are no additional signs of anything new. I can focus on my recovery.