Back in 2015, I went to see my Primary Care Manager several times because of fatigue and feeling feverish (when I didn’t have a fever). My muscles and bones were hurting. I was also retaining water, my feet and ankles were huge. I switched PCM’s around September of 2015 and told her what was going on, how I felt tired all the time, etc.
She took the time and ran tests. I received a call from a nephrology doctor saying that my PCM had referred me to her and she needed to see me ASAP (I go to military hospitals). I went and she explained to me that my kidneys were failing but she didn’t know why. I am not diabetic, so that was ruled out, I have high blood pressure, but under control.
So finally, in December of 2015, I had a kidney biopsy and it came positive for AA amyloidosis. My kidneys were declining. I went to the Mayo Clinic in Jacksonville, Florida and saw a specialist in amyloidosis. I did genetic testing and it came negative for Familial Mediterranean Fever. I have gone every year since, to see the specialist. I also see a rheumatologist and he put me in colchicine (even that I tested negative for Familial Mediterranean Fever) to see if it would work. My kidneys at this time were functioning at about 18%. After a month taking colchicine, my kidney function went to 25%. I have been taking this medication for over a year and I am now at 32%!! I even feel better, however, I am still retaining water.