@betsyhase Hi. I can certainly relate to the brain fog and the weakness, along with the hip, knee, and shoulder pain.
I was started on 40mg of Prednisone, split by taking 20 mg in the morning and 20 mg at night. The pain vanished almost immediately (less than 36 hours.) I couldn’t sleep though, and that went on for a week, so I was prescribed sleeping pills. That helped get me six hours of sleep at night, but when I reduced my Prednisine at night to 10mg at night (30mg/day) that helped.
Now, 90 days since my diagnosis, I take no Prednidone at night, I sleep without sleeping pills, and I sleep 8 hours.
I’m down to 15mg/day now.
About half of the time, I have headaches during the night and especially before waking (getting out of bed) in the morning. Once I get up, the headaches fade away. Coffee helps, and I limit myself to one large cup/day.
I also have had pain (like razor blades) in the palms of my hands and the soles of my feet but but it is getting better. Numbness started in my hands and feet after starting Prednisone. My PCP says that is a Prednisone side/effect. He passed me in to a rheumatologist after the Prednisone (I’m convinced and so is my rheumatologist) triggered a blood clot in my leg and had to be hospitalized. Was I started on too much Prednisone , I don’t know but I’m taking far less now.
As you’ve probably figured out, other than pain and Prednisone, nothing is really the same for everybody.
I’m not a doctor but I’m going to suggest that you talk with or message your doctor about increasing your dosage of Prednisone just a little bit. I would try adding 5mg more per day and see if that eliminates your pain. Don’t over do it. Don’t under do it. Find what works for you then stick with that until your doctor and you agree to reduce the daily amount. Prednisone should eliminate your pain in a few days tops (less than a week.) That’s common with PMR.
If you split your daily amount into am and pm, most of the success that I’ve read about and personally experienced, advise to take most of it in the morning when pain seems to be the most and a lessor amount in the evening so you can still sleep.
Good luck and wishing you success in getting past PMR.
This is a wonderful support group and I’ve learned a lot from many here. You’re not alone.
Keep us up to date and informed on how you’re doing.