@jabrown0407
Thanks so much for answering. I do appreciate that you're not an MD, but speaking with people who've been dealing with all of it helps. No, it's not the early AM prednisone that's keeping me awake. I'm so sleep deprived and I have sleep apnea and already have had chronic pain and pain medication for many many years. I have 2 cervical vertebrae fused and have a lot of chronic muscle spasm in my upper back. But I've been able to fall asleep the minute my head hits the pillow for years. My husband often has to remind me to put my CPAP mask on. It's the early AM pain wakes me up and has nightly since Mid-March, as I've read it does for many. (Around 1:30-2am usually). This isn't pain I've ever had before. Always originates in both shoulders and top girdle of upper back.,into upper arms and hands. Before the Prednisone I also had horrible swelling like sausages in fingers of both hands and some nasty wrist pain on left. That swelling is gone in both since Prednisone but not some left hand stiffness and pain. Not my usual neck/upper back pain. It's completely different and the intensity was brutal before Prednisone.
What has kept me from sleeping at all the past 2 nights is the split. (15mg 7:30am, 1pm 5mg).
Prior to Prednisone and even the first few days, since Mid-March, the pain is what wakes me up every night.
Upper back girdle and shoulders are where the worst pain is that wakes me up. I've been having to sleep on my back since Mid-March due to a small rotator cuff tear on right side(-all right side shoulder pain and symptoms are gone, as is the rest of my bodies pain & symptoms), but also have had a lot of old issues on my left side, that's true and my Rheumatologist is aware. But this pain is ,has always, and still is starting about 2am, just as I hear PMR does., then lasts into the morning and gradually eases. I've had to get upright and go sleep on couch sitting up since Mid-March (prior to Prednisone). The pain didn't go away, but it was a bit more tolerable sutting upright with pillows under my arms. I had the weakness in upper arms and couldn't lift them. That's been gone since a few days at 15mg.
The left side pain continuing may definitely have some other problems behind them but the type of pain/symptoms are totally PMR type. I had CRP and ESR elevated, my iron saturation was 9, my regular iron was 24 or so, ferritin was 178 originally. My RBC, etc were all low. Had to start IV Iron, Venofer. Have one more I next week then done with the 5 IV's.
I do CRP,ESR,IRON, CBC, A1C, D3, and some others I can't remember tomorrow morning. I agree that's a good gauge for us and the Dr.
The 40mg,30, back to 20 is interesting idea. I agree, and have been messaging my Rheumatologist regularly through our medical portal. I'll have my 2nd visit 9/4. I do need to ask her what her dosing strategy is though. Great question. Thanks.
This disease is the most difficult, painful and longest lasting (due to Dr's and I not knowing what it was until many different combinations if blood tests), that I've ever experienced and at 73 with osteoarthritis and bad spine, multiple surgeries, that's saying a lot. I think the sleep disturbance has made it so much harder too. It was my NP ordering the Iron saturation, CRP, ESR, Ferritin, CBC all at same time that lead me to search online and found PMR matched my symptoms better than anything else I'd looked at. That's when I asked to get on Rheumatologist cancelation list. Got in next day!! Miracle. She examined me and confirmed PMR But ordered an Ultrasound the next day. It confirmed PMR but thankfully, no GCA. Sorry this is so long but maybe it'll give some information to someone else as well.
Thank you again for your input. It is very helpful. Grateful for this support group. Blessings to everyone.