I’m so discouraged, will this ever get better? Since January when diagnosed I don’t seem to be getting any better, feeling and looking worse in fact. 40mg in Jan, to 30, 27.5 today. Once got to 25 but then got symptoms. It’s been 5 1/2 months.
I haven’t had any more visual symptoms but when I did see the rheumy last week to discuss what was going on it was the same old story...” these are prednisone symptoms not PMR/GCA.”
I had my typed list for her, made no difference. She glared at me, not listening. Well we need to do a biopsy then to tell”, a biopsy now? I’ve been on 40-30 mg for 4 months, one month on 25mg and a biopsy will show GCA?
She called my eye specialist who concurred it didn’t sound like GCA, and she offered to do a biopsy the next day! Now I’m totally confused and more distrustful than ever. Why would the eye specialist think this could show anything now?
I said I’d like to go slower on reductions, the rheumy didn’t agree, just said “it’s been over 2 weeks since you were to go from 25 to 20.
I just said “we’ll see how it goes”, as she was leaving. She didn’t, however, put the usual “if bloods are OK in 2 weeks reduce to 20” into the printed patient instructions like usual, so maybe that’s encouraging? But she wants to see me again in 2 weeks and I’m sure she will ask.
I see the eye specialist in 2 days.
I went to 30mg for a week or so, back down to 27.5 for the past 3 days. Some withdrawal symptoms.
I asked my sister to go with me next time. I couldn’t believe how scared, and upset and frightened I got, I was a real mess in that appointment
Meanwhile my hair continues to fall out, and I am so depressed, really in a dark place right now. I’ve struggled with depression a lot, been on meds several times. I’m really can’t see a way forward.
Lots of financial problems.
My sister is my only support, and I think she’s getting tired of it.