Disappointment and Hope Mixed

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::

~Tal

i am in the same predicament basically and i have my 2nd rheumy appt on tuesday of next week, this is my new one by the way-altho i do have positive ana and high inflammation markers my rheumy said i have "borderline lupus" and possibly sjogrens but she wants to wait till this next visit and re-do blood work and see if i have had any more physical symptoms which i have had. I am like you i do not want to have lupus but i just want to know what is wrong-i have been sick for so many years, she treated me for fibromyalgia, not lupus, i am taking neurotin and it has helped and i just started taking anti-inflammatories and they are helping a bit. i was a dummy yesterday and got outside (with sunscreen) and i was hurting so bad last nite almost made a trip to the er, i cant wait to get to the doctor next week. your lucky tho you have one who listens good luck

Talencia

You are always welcome here! I hope you find your answers...

I understand all your concerns as I share the same ones. Prednisone is my saving grace! I start to notice a change w/in 24 hrs!!! And pred stays I. Ur system for sometime! I wish you the best!! Pls keep us posted on ur progress and I hope it does help!!

I agree with Trisha...you are most welcome here. I take prednisone every time I flare up. In addition I take Plaquenil and an anti-inflammatory. I've been told by my rheumy that my ANA test came back borderline positive or weakly positive. He too follows his gut and years of experience in treating me. The dose you're starting with is very low...so please don't lose heart if you don't experience relief right away. I took that dose once and it took twice as long for my flare to subside. However, your dr. is doing the right thing in starting steroids at the lowest dose. Hang in there...

I am on 30mgs down from 40mgs/day a week ago. I did actually notice the pain receding in my joints fairly early, within a week or two. I am also on Plaquenil and something else I can't remember but how it was explained to me (I also was VERY anti-steroids) the other meds can take up to 8 months to start feeling some relief whereas the steroids can give relief quickly. That has been very good for me. Although the goal is to get off of the Prednisone it is giving me relief.

It sounds like you found a good doctor, which is a blessing. I will be thinking and praying for you.

Hugs,

DeAnne