Emotional Roller Coaster and PMR

Thank you all for sharing your stories. I am new to this journey and just trying to learn as much as I can. As much as I resisted prednisone, the pain and sleeplessness became intolerable, so I have started on a very small dose. I have begun to feel a minimal amount of relief, but still have a long way to go. For me, the most frustrating part has been navigating the medical system. My primary doctor prescribed the prednisone as I am still waiting to get into a rheumatologist. I've been basically healthy and am very active, so this is a real curve ball. I know God uses pain and suffering for His good purposes and am doing my best to navigate this journey with grace, but it's not easy. The lack of awareness and often well meaning, but ill-advised recommendations from friends also can be challenging. My older brother has a bout with PMR about 7 years ago - he was even hospitalized. The good news is that he is no longer on prednisone nor has he had any recurrence of PMR. This gives me hope as do your stories. Mahalo.

@cheraloha welcome to the PMR journey - it is never a dull moment - but there will be days and weeks when you wish you could change trains or planes or spaceships. You did not mention how much prednisone you are on, but if it is helping you might speak to your doctor or write them a note if you use an electronic portal about upping your dose some. My understanding is if you require more than 20mg a day then it is worth considering that there is something else at play. I had to wait to see my rheumy and my PCP offered to start me on 5mg and go up 1 mg per every 2 weeks to see what dosage was the smallest dosage that worked for me. I did not accept the offer. In retrospect I wish I had. My Rheumy wanted me to start at 40mg/day and I turned that down flat. Long story but I did finally get treated for the PMR. I am now dealing with several other problems associated with my adverse reaction, which was 6, yes 6, years ago.

I agree with @jabrown0407 that your dose sounds like it is too low if you are not getting complete relief from your pain. I lived with undiagnosed PMR for a year before being diagnosed with GCA in an emergency situation. I was starting to have vision problems from the GCA, and could have lost the vision in one or potentially both eyes if I hadn't gotten treatment in time. I regret now not getting treatment earlier for the PMR. I blamed my problems on other things such as aging. I've been taking prednisone for the past 8 months, and Actemra for the past 7 months. I started at 60 mg a day on the prednisone, and now I'm down to 8. I had a lot of insomnia until the prednisone dose got down to around 40 mg per day. Other than that, I've gained just a little weight and had some trouble with my muscles while exercising. The muscle problems seemed to have cleared up as I got the prednisone dose down to 10 mg per day. I haven't had any pain from the PMR or GCA since I started treatment 8 months ago, and I feel much better than when the PMR began a year and a half ago.

I had PMR, then GCA, undiagnosed for a year. That was my own fault as I thought it was fibromyalgia and nothing could be done.
My PCP was not curious enough to match my symptoms of pain and stiffness with a slightly elevated sed rate in the earlier stages (after I had it about six months).
A good friend, a doctor, familiar with PMR and GCA, got involved when I got shingles (a mild case, I'd had the SHINGREX vaccine). He told me what tests to ask my PCP to order. My PCP was resistant. My inflammatory markers were off the charts when the test results came in. I was referred to a rheumatologist and immediately scheduled for a temporal artery biopsy.
My mother in law had a mysterious ailment which my same doctor friend diagnosed as GCA back in the 90s, and my maternal aunt had it as well.
I was very familiar with my m-i-l's symptoms, but they were so different from mine, I never for a minute thought I had GCA.
The pain of PMR is unlike any other, on a scale of 12 out of 10. While I wasn't diagnosed I was on jury duty and couldn't press down the faucet in the bathroom to get water to wash my hands. Someone did it for me.
It was difficult to come to terms with having osteoporosis and having to take prednisone, but I knew it was necessary.
I was off prednisone one year, then had a relapse. The symptoms of GCA the second time around were somewhat different from the first time. My reactions to the high dosage of prednisone, 40 mg, was different as well.
GCA has caused me to scale back my activities, and not expect to accomplish a multitude of tasks in one day. Through all this, I've been caregiver to my husband who has Alzheimer's Disease, but so far, that's been easy.
By the way, my mother-in-law lived to be nearly 100 after her diagnosis of GCA when she was in her 80s.
I wish the best to everyone who has this strange, relatively rare disorder.