Two years ago this month, after 2 viral episodes, I developed new and different upper body pain which became intolerable. Saw a rheumatologist who initially diagnosed PMR. After blood results were in, the diagnosis was C-ANCA + at 1.6. Started on 16 mg. of PREDNISONE and within 2 days, felt great-no pain, plenty of energy.
About 6 months later, sought a second opinion from an expert in vasculitis at Johns Hopkins in Baltimore, MD. She did not agree with the C-ANCA diagnosis, as the titre was too low to be positive in their lab's parameters.
Some of you may remember that I had a tropical mosquito borne virus while in the Caribbean. The literature shows that this virus can make itself known again in 2 years after initial recovery with joint pain and Neuro problems, including temporary loss of vision in one eye . I had tapered to 8 mg. when the temporary vision loss occurred and took it upon myself to go back up to 16mg.
Eyes examined which showed on Doppler that central retinal vein was presumed to be blocked because it could not be visualized by doctors. The vasculitis expert was "intrigued" with a possible connection between the tropical virus and my symptoms , but no way to prove it. Also puzzled by PMR diagnosis because sed rate and CRP absolutely normal. She suggested a slow taper off Prednisone.
I changed rheumatologist who also did not believe the GPA diagnosis. And repeated all tests , ; he sent blood smears to 3 different labs, all negative. But that could be due to the Prednisone treatment and a brief time on Methotrexate.???
My current situation is that I have tapered from 16 to 4 mg of PREDNISONE. I have stayed at 4 mg for quite a long time. I am now very nervous and depressed. I think it is the reduction in Prednisone. I am fatigued, listless, and achy all over again; I feel a loss in confidence as well.
Has anyone felt this way on low dose Prednisone? I am tempted to go back up as an experiment to see if that makes the difference. What would you do? I am scheduled to see rheumatologist in 2 weeks. Thanks for any ideas.
It has been a rough 2 years and still do not feel normal; although I had a burst of feeling well and normal sometime back, which I wrote about on this site, but now shaky, depressed and no longer know what to do, I read all day and have no motivation to do anything else.
My husband cheerfully does everything; but I am feeling lost and useless.