I saw the rheumatologist today. I was a little worried about what his reaction would be when I told him I'd stopped the Salsalate without consulting him, but it was no big deal. (Just like you said, Stef! Thanks! :)
He is putting me back on Plaquenil, which you might remember that I tried last fall but gave up after a week of side effects that my internist summarized as doing too good a job of fooling my body into believing it had malaria.
The rheumatologist thinks that the side effects should lessen after I've been on the drug for a while, so I'm willing to try it again. Particularly since after he saw the records from my gastroenterologist about my series of ulcers from 2000-2005, he said that he definitely wasn't willing to put me on NSAIDs since the ulcers were clearly caused by NSAID use (including the ones that are supposedly gentle on your stomach like Vioxx and Bextra).
We'll see how the Plaquenil goes. I'm told it will take at least three months before we'll know for sure if it's helpful. If I don't see results within six months, he'll take me off it.
The rheumatologist still leans toward thinking this is a rare case of prolonged chronic parvo but says it could also be a "mild" case of Lupus. (Man, I'm glad it's not the severe kind since this "mild" case of whatever I've got has certainly knocked me on my butt! :)
Essentially, he says there's no way to be sure which it is. "Time will tell," he says. If it's parvo, it will eventually go away. As of yet, he says there are no case studies of parvo lasting longer than 5 years. But there's also no guarantee that it'll be gone by then even if it is just parvo.
Even if/when my symptoms do disappear, we'll have to wait longer (how long? who knows!) to be able to determine for sure that it was just parvo and that I haven't simply gone into a Lupus remission.
He was perplexed by my continued hearing loss and tinnitus after stopping the Salsalate. He was not terribly concerned about the ear pain I continue to have that my ENT suggested could be a connective tissue/inflammation thing. He also was not terribly interested in my complaints about my increasing knee problems. :/ (Oddly, the resident who was with him looked at my right knee and declared she didn't see any inflammation despite my repeatedly saying it was my left knee that was the main problem. :P )
Interestingly, I mentioned the nasal polyps my ENT is so interested in and that he said they had grown considerably since the first time I saw him in March 2007 (they decreased in size for awhile during my early days on Prednisone). The rheumatologist said that there was a rare combination of asthma, allergies and aspirin sensitivity that causes flare ups in nasal polyps when on drugs like Salsalate. He said it was probably good that I was off it. Lucky me, one more "rare" condition. ;) There was a name for it but I don't remember it. It will be interesting to see if the nasal polyps are smaller when I return to the ENT in June.
So that's all I know. I continue to go for acupuncture twice a week, which seems to help a bit with my fatigue (i.e. exhaustion!) and I have cut back some on pain meds, at least for right now. My pain levels tend to cycle so it's hard to know if this is a "permanent" decrease in narcotic use or whether it's just temporary. But I'll take it when I can get it!
Looks like June will be a big month for me. That's when I return to the rheumatologist, get another hearing test to see if I improve after more time off the Salsalate, and the ENT will put another scope up my nose (and down my throat) to check out my polyps and ear canals.
4 months ago