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Can sed rate and c reactive results be normal while taking Prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (41)Comment receiving replies
@kobellava You weren’t kidding when you said crazy ophthalmologist taper! I’ve never heard of one so extreme. I’m glad you saw your way through that, although it doesn’t sound like it was easy. Have you managed to maintain your eye health with GCA? I understand what you mean by not letting it upend your life. It’s easy to become hyper focused on your body and the pain. I find if I keep myself busy, socially, it is a great distraction.
I’ve learned so much from your comments. I did not know that a drug-free remission was not possible with GCA. It must be somewhat comforting to know your aunt has reached 90 years old on a maintenance dose of 4 mg. That impressive! It’s nice you have her to talk with about this. I have one friend who’s already been down the PMR road. She was able to taper off after about 17 months. It’s been about four months and I think she is starting to have some problems again. She’s a very positive person so she doesn’t like to let on when she’s not doing well. I was grateful to her when I first receive my diagnosis as she was a wealth of information.
I can relate when you talk about fatigue, sleep, and being up at 4 AM. That is probably one of my hardest things to manage is the constant fatigue. It’s hard to want to get up and move when you’re constantly tired. Sleep becomes erratic and can be hard to get on a schedule when you feel the need to nap, but then you’re up before the sun.
Thank you for sharing your story. I truly hope that you are able to achieve a drug-free remission one day. I think we can agree everybody’s different with how they come through this illness. Like you said, we will get to the other side of this journey eventually. I wish you better days ahead. Slow and steady, we will get there!
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@franklinlala I thank you for sharing your story too. I'm sorry about your friend having problems again. If she doesn't wait too long she may be okay with a low dose of Prednisone. It would be horrible to have to start all over again. When I was admitted to the hospital I was blind in my right eye and had blurred graphic type vision in left. Saw multiple blurred images. It was ready to go. They immediately put me on 1000 mgs IV of steroids. It happened quickly the night before and silly me thought it was stress related because we had just put my sister-in-law in hospice, I had a stroke the month before which was completely reversed with that clot buster and I found out in my second stay it was actually the GCA that caused it. The opthamologist there when I had the stroke kept telling me something was off, he just couldn't figure it out. Well, the GCA symptoms were there but the brain doctor didn't know about GCA, The opthamologist was there when I showed up blind and immediately ordered the IV. He knew then what it was. It's rare to get your sight back once you lose it and I thank God for his grace and mercy all those who prayed for me and the opthamologist. I see fine but could still lose it on these low doses. People have but I don't dwell on it. I just spent the afternoon in the yard with my 91 year old mom, very healthy lady who worries about me but I told her there are others much worse off. We just don't have health issues in this family (my aunt is not blood related, her husband is my moms brother) and no one understands why I have GCA. I don't understand it either. I do wish there was something we could do about the fatigue. I haven't had a good night sleep in 1 1/2 years and naps to help with the fatigue, well aren't helping. I do keep myself busy, very busy but pace myself. I also want to say the opthamologist that diagnosed me and confirmed by temporal biopsy is the same guy that gave me that crazy taper after a year of me tapering. He's very smart with some things, not so smart with others but I respect him for all his efforts in saving my sight. He's much older and refuses to retire. Good man. We will definitely get to the other side of this, takes patience. Wishing you well and saying a prayer you do well on 5 mgs.