I have had my second rheumy appointment, and my worst fear came true. With all the blood tests my doc ran for inflammation... they all came back negative. I am cringing at thinking about how my friends will react to this news, as they will think it's good news. Then I'll get to explain how it is NOT good news.
The actual good news is that my doctor is convinced that I have some sort of inflammation going on. He said I could be "flying just under the radar", too low for the tests to be picking up, but still having issues. It is a relief to have him thinking for himself and not simply believing the test results and brushing me off. He has a hunch or two about what specifically may be wrong, but he said it's too early to run the tests again.
So, in the meantime he is changing my meds. He's taking me off the ibuprofen, and has put me on prednisone. I'm not thrilled about taking it, as I'd rather avoid steroids if at all possible. HOWEVER, there are benefits beyond just handling of symptoms. He said that if it works, it proves that there IS inflammation going on that needs to be addressed, and it will give him a starting point to pursue it. He said if it does NOT help, it'll give proof towards it being Fibro instead.
This puts me in a rather unenviable position. On the one hand, I would really rather it be Fibro, since it's not damaging to the body, less dangerous. However, if that's so, it would mean the next month is going to be horrendous, as he doesn't want me taking the ibuprofen anymore. This is not really something to look forward to. Then again, if it does work and I am spared a month's worth of unmitigated pain, it means it could be something much more serious, and that's scary.
And of course, this is all BESIDES the trials the steroid itself could put me through, regardless of pain/inflammation alleviation or not! I am so not looking forward to this month!
The hope that keeps me enduring, though, is that this month will help give a more definitive direction to look for answers. Right now, ANSWERS are what I keep praying for. I'm pretty solidly sure at this point that whatever is wrong, it will be a life-long problem. It's just a matter of how dangerous and how treatable it is.
So there it is. I took my first dose this morning (my pills are 5mg, and I'm taking one and a half pills a day... it'll be bumped up to two pills a day if it's not effective after one week), and I'm already hurting from stopping the ibuprofen yesterday. I'm trying very hard not to dread things too much, but I just about can't help it.
I have two questions for folks. First, if this prednisone is going to work, at what point would/could/should I notice a difference? Logically I know one week is a cut-off point, as that's when he told me to step it up, but I'm hoping to see a difference before then. I've never taken oral steroids, so I have no frame of reference whatsoever.
And second... if eventually I turn up to not have Lupus, do I have to leave you wonderful folks? I'd rather not, but I wouldn't share that linking factor. I know, I'm silly to worry about something like that amidst all the other worries, but... it's been nice seeing familiar faces responding to me, or being involved with new folks who become familiar faces here.
::hugs to all::