I'm back from the Dr. He said he definitely thinks I am in the early stages of some rheumatalogical autoimmune disease but has no idea what. All my labs have been normal except SED and CRP, this last time my SED was also back in the normal range (after taking prednisone).
He wants to watch me and see me on a monthly basis. He is giving me a low dose Prednisone taper. I will be on 10mg for 2 weeks then down to 5mg for 2 weeks then 2mg for 2 weeks than 1mg for 2 weeks. He says he thinks it will put it into remission if he does the Pred this way.
I am frustrated, When I was on 20 mg Pred a few weeks ago, I felt good, but once I tapered to 10mg I started feeling bad again so I am afraid that this time only being on 10mg won't do anything. I also don't want to get on pred and not be able to get off. I am scared of the side effects, 10 days was one thing, 3 months is a whole different ballgame.
It's still a relatively short time to be on it, and it may very well buy you some time while you and your medical team decide what to do next.
I wish they could give you a definitive answer. It's a pain not knowing isn't it? People always want to put a name to their condition, it validates it I think.I'm sorry you weren't pleased with the advice you received today. Try to hang in there. It's a process and sometimes it takes certain doctors a little more time to come around to a decision. Jas is right; three months isn't that long to be on predisone. It's not the way I would have wanted things to go either; but ya gotta trust he knows what he's doing.
I also agree, 3 months isn't that long, when I'm put on it for a flare up the only thing I hate is the weight gain, but I also always drop the extra pounds once taken off pred. I'm sorry they couldn't be more definite with you but at least your Doc is being proactive and wants to follow up with you every month. It took 3 years of pain and inflammation before my PCP finally said "you know what, I don't think it's Fibromyalgia anymore, I think you may have RA and I'm sending you to see a rheumatologist". My 1st thought was WHAT? And you're just NOW figuring this out? But Dr.s don't know everything like we wish they did, they are just people with a medical degree that sometimes guess wrong, especially when it's tricky to diagnose in the 1st place.
bump, sorry you're frustrated, is he a Rhem Dr?Crap- sorry you didn't get definitive answers yet. I remember being told that there were no "magic pills" it was going to be a lot of trial & error.Jenn...hang in there. These issues seem to take quite some time to pinpoint and stabalize. I was diagnosed 2 years ago and have had two or three timespans when all was great only for the flares to come back and have to recalibrate meds again. As a matter of fact I am at that point again now. My point is, this is not an exact science given how little they don't know about autoimmune diseases. Good news is, you have someone trying to help.
As for the Prednisone, 3 months really is not that long, and there are things you can do to help offset some of the possible side effects. For instance, if you are worried about bone loss you can start a good, yet light, strength exercise routine. This will strengthen the bones and help combat any possible bone loss. I'm not talking about becoming a weight lifter. Find a simple routine that uses small dumbells (3, 5 and 10 lbs). And make sure you are getting enought Calcium and Vitamin D.