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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
@franklinlala Thank you very much for your comments. I too have only dropped 1/2 mg. every 5-6 weeks although my rheumatologist suggested 1 mg. It was my opthamologist that sent me into a flare with a crazy taper of 7.5, 5, 7.5, 5 and when I got to 5 after a few days I had a flare and had to go up to 20 mgs. Very frustrating. I was at 6.5 for 5 weeks and dropped to 6. Was fine for a couple of days and then nothing but a struggle to even get out of bed. Slept most of the day today and it's now almost 4 in the morning. I've tried not to let this disease upend my life but there are many days that just aren't normal. My aunt who is 90 has PMR and has been on a maintenance dose of 4 mgs. for 20 years. My doctor has said that may be the case with me with GCA. I have to add she is doing well but has her days too. Her PMR never progressed to GCA and I pray yours doesn't either. We know our bodies better than doctors and I've come to the conclusion that the ones I see really don't know enough about GCA and it affects every one different. I know how painful PMR can be and I'm sorry. I do know we will get through these unexpected challenges. With GCA I know the chance of drug free remission isn't very high. If I can get to 4 mgs I will be okay with staying there. I'm happy for you that you are doing well at 5mgs. That's something to celebrate! Wishing you all the best and yes, best of health to you too!
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@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!