OK I am at a loss, since my labs are coming back slightly elevated but not "crazy high". The Prednisone is working and I feel so much better but I only have 2 more days and it is gone then a week before I see the Dr. and I am afraid I will have a really bad week with no Pred.
I have not made a miraculous recovery, but I feel good enough to function, and can even do some things that were too painful to even think about before, like cleaning the house. I am really scared of how I will feel once the Pred is out of my system. I am on the 3rd day of my taper and already can tell a difference in how I feel now versus when I was on the higher dose.
I need to know what the best thing to ask my Dr is. Should I go ahead and ask for X-rays since the blood work is not telling anything, will they help in getting a Dx? Should I see if I can try some RA medications and see if they work. I mean if they don't work I am out some $ and that's about it, they won't kill me if I don't have RA, right? I just want to be able to function on a semi-normal level again. I could ask for more Pred, but that is not a long term fix and since this illness has been going on 9 months now, that seems pretty long term to me.
Now that I finally have a Dr who is listening, I have no clue what to say. I said everything I had said to the others at the first visit with him and now I am at a loss.
well to me as a medical person the fact that the prednisone worked is quite telling. If there was no inflammation then the drugs wouldn't have made you feel better. My lab work always comes back with only slight elevations but I am treated as if I have aggressive RA. Why? Because on MRI of my hands and my spine and xrays of my feet it appears that way. I'm sure you know that you can't stay on high doses of prednisone forever even though it makes you feels so much better, it can damage other parts of your body and you don't want that to happen. I would tell the doc that I'm scared and don't want to go back to feeling so horrid. He needs to make up his mind what he's treating.
That is what I would like to know. What are you treating? I mean I can't just go undiagnosed forever. Now, we know Prednisone works, so what's next? How do we move forward? Xrays, drugs, a Dx? I mean there has to be a "next step" in the equation. That is the part when I am confused. I guess it is the Dr's job to know that and not mine, but the other Dr.s have let me down and I want to have some control over this and how I feel and not just take what he throws at me.
When I finally told my GP that I needed an action plan in the same way as I did for asthma. everything began to come together. That and a detailed history was the basis for treatment.
You may or may not have a "diagnosis", that's kind of secondary unless you are disabled.
Concentrate on treatment:medicine, exercise, diet, blood tests as necessary. If you have RA, something will eventually prove that out.
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