Inverse relation between sleep and PMR symptoms

@dadcue Off topic I know but worried about taking Covid shot. I have had flu shot but not Covid for several years.Off prednisone for 6 months PCD thinks I should..

@dadcue Off topic I know but worried about taking Covid shot. I have had flu shot but not Covid for several years.Off prednisone for 6 months PCD thinks I should..

@dadcue Off topic I know but worried about taking Covid shot. I have had flu shot but not Covid for several years.Off prednisone for 6 months PCD thinks I should..

@marymckeith I was diagnosed with PMR in July 25 and have tapered down on Prednisone to 12.5 mg/day. My Rheum said OK to have Flu and Covid vaccinations, even at same time. Just to be safe, I did them a week apart. More often than not I feel wimpy for a day or two after getting annuals Flu shots, this time I had no reaction, not even soreness at injection site. Same with the Covid shot. You never know what is going to trigger a flair up or not. For myself, I assessed the risk of getting the Flu or Covid to be worse for me than the risk of a fair up.

@marymckeith

I'm not pro-vaccine or anti-vaccine. At every doctor visit I am offered various vaccines and sometimes I get them and sometimes I don't. Typically, I don't have many reasons for not doing any particular vaccine. When I can't think of a reason for not doing a vaccine, I either do the vaccine or I say that I'm not "mentally prepared" for the vaccine but ask me again sometime and maybe I will.

I don't remember how many Covid vaccines I have done. They were being offered to me regularly and usually I got them. I don't remember when my last Covid vaccine was. It has been a while because nobody has asked me recently if I wanted one.

@martha13 I tried magnesium glycinate supplements but they gave me diarrhea. I thought about pairing it with my iron tablets that gave me constipation, but decided not to confuse my gut any further!

@jim99 Thanks so much for your reply. I think I will get covid shot. I am up in age and agree that I would rather accept a flare than covid. You decided me.

I split the dose of prednisone, breakfast and dinner, 7:30am and 6:30pm more or less, pretty consistent. The sleep issues are pre-existing, and not particularly due to the prednisone though I suspect it doesn't help. I don't have problems with overnight pain. It's not surprising that PMR symptoms can be worse on rising, but I am struck that both the soreness and the extreme fatigue (which I see as a PMR symptom) are less likely to occur if the sleep is disrupted. Puzzling to me.

@marymckeith my husband and I got both flu and covid boosters 2 weeks ago. No problem. With immune system more susceptible to things being on prednisone and kevzara I thought it would be helpful. Rheumatologist and pharmacist agreed.

@eakin
Movement helps my symptoms, sometimes, not all the time so more movement during the night would male sense to feel less pain versus, no movement all night and then get up after 6-7 hours of sleep. Pain wakes me up, often, because I move a lot, roll from one side to the other all night long. Pain in the am can definitely be less, the more ive moved. I have an alarm on my fitbit that goes off of I haven't taken more than 250 steps that hour. The more sedentary I am, typical for Pain to be much worse.

I'm undiagnosed at this point with PMR & GCA, my Mom has both. Ive got Hashimotos and ocular rosacia and straight rosacia. I was diagnosed with Polycythemia Vera in early 2023 due to my HGB going up to 18. They did 5 blood draws, brought me down to 11, which wrecked me for a good week, could not get up a flight of stairs without resting, BP was going way high, then low, my level of pain was very bad, whole body itchy, crashing headaches that were debilitating etc. I pushed to the 3rd oncologist because 2nd wasnt listening to me. Finally got a BMBX (horrible test but over pretty quickly) and low and behold, NO blood cancer.

They still dont know why it did what it did, its ticked back up to 14.9 and the pain in my hands, feet, shoulders, hips, is all back. Went back to the rheumatologist who found my Hashimotos, we're scheduling ultrasounds to check for inflammation. My gut is telling me my pain is Autoimmune but my inflammation isn't sky high.

I think my family pretty much feels im "faking" to get attention. My sister has cancer and she gets lots of attention, and rightly so, but she ended up with the same exact gut issues I have (she had the ring done to lose weight, never adjusted it for MANY years and gained the 80-100 lbs back, then got the gastric sleeve, then got esophageal cancer. She has next to NO pain, blows my mind. I have a very high pain tolerance which I think can be detrimental because I down play my level of pain most of the time.

This health journey has been a good 3 years with no answers yet. Its depressing but I'm not giving up, I want to ski till im 90, travel the world etc. I was forced to retire at 59 because I was so sick, but yet my family feels like im faking because I don't "look" sick moat of the time and dont have.cancer. They were all very concerned when I had PV, not any more.

Its ok, I have a dear friend who supports me 💯 and I have these forums which have been a godsend 🙏

Thanks for allowing me to vent once in awhile.

Stay strong 💪 🤘 ✨️