Went to rheumy yesterday. Had talk about
how well the prednisone is working. Well...I told him that I thought that it had worked in the beginning but that some of the burning, itchy, muscle type aches are easing their way back. I notice this especially from elbow to elbow. He was a bit perplexed. He expected me to say that it worked really well or that it did nothing. He is going to go ahead and leave me on it for another 6 weeks, run the blood work again, then go from there. So, I still have no official diagnosis. (Sed rate high 47 but all other inflammation tests come back negative or in range? He says that I could still have and auto immune issue even with negative markers OR it could be from the two surgeries I had and things are still not settled back to normal?)
I did tell him about the extreme dry eyes, mouth and other regions and about the dental issues that have hit me hard the last several months. He didn't offer an opinion on this but did say that even though everything doesn't add up he will keep at it till something does. In the meantime he is going to continue to treat the symptoms which is all I ask.
Now, I know that my vitamin D levels are very low and that adds to the muscle aches so we shall see if that helps in the long run. Apparently I have an absorbtion issue and vitamin D, iron and B-12 are always going to be a problem for me. Already knew about the iron and b-12 but didn't know about the D. Last doctor never rechecked it.
The only thing I am afraid of is - in 6 weeks if I feel better, will it be because of the vitamin D or the prednisone? He is going to taper down, I believe, at that time and I guess that is what will tell. I just hate the idea of going from feeling good, if that should happen, to feeling bad all for the sake of figuring out which meds to be on.
I do not let this get to me for the most part. I still get up everyday and work full time, go home and cook, clean, laundry and still take a nice long walk in the evenings. But, My mother passed away from ALS and sometimes this limbo land issue has me wondering???