I think I have finally come to the end with my current RD.
Those of you who know me- know that after a horrific onset and then getting things under control with MTX and massive doses of prednisone; I tapered off of the prednisone and continued to enjoy pretty good health with only minor daily pain and without significant flares. I then had elevated liver enzymes which caused my dr. to discontinue the MTX and kept re-testing my blood to see if they came down. They did after a couple of months and lo & behold I felt no worse off the MTX than on- so he said I could stay off and be monitored.
This month that will be 2 years!
However towards the end of this summer (I believe) I started to feel like maybe something was going on-I was feeling more painful and fatigued, etc. My dr. has been claiming I am in remission forever because I don't have prolonged morning stiffness and this pain I have every day (hands, feet, ankles are always tender but sometimes actually painful)- he discounts because he cannot SEE any swelling, disfigurement and my blood reveals normal levels. (always has- except during the bad onset where I was blown up with swelling and then ESR & CRP were off the charts. RF- always negative) I have never called this remission.
It got to the point where it appears he does not even think I have RA. I have been having tummy troubles which I relate to stress and he is now testing me for all kinds of autoimmune bowel diseases. He also said at last visit that I have fibromyalgia and I should try Cymbalta. I don't think I do and no thank you.
When he examined my feet- this time he said he saw bunion activity going on but that's caused by SHOES.
My feet have been bothering me a lot since late summer, always hurting when I walk, sometimes can't walk right after I take my shoes off, and always tender. I thought I saw the shape of my feet changing and a couple of toes curving but he has me thinking I'm nuts so I thought I was imagining the change.
Anyway after I left his office I started thinking....I haven't had xrays of my hands & feet for at least 2 years. Maybe there is something going on with them that an xray would show despite the fact that I have very minor swelling if any. They have consistenly been tender and or painful all along. So I asked the doctor. he got pissy saying the only thing it will show is if there is OA causing the bunions but if it makes me feel better he'll order them.
If xrays do not show RA activity why do they insist you have baselines taken at diagnosis? Why does he choose to discount or blame my hand & foot pain on other arthritic conditions when hand & foot are classic RA symptoms?
He has me to the point that I want to see something on these xrays RA related just to say I TOLD YOU SO- even though deformities are the last thing I want.
Anyway- I have taken the blood tests he ordered and will schedule my xrays but after the results are in- I do believe I will schedule a 2nd opinion at the very least.
Thanks for listening.
Hope you all are feeling well and are enjoying the holiday season.