GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Thanks so much. Everything has been checked out. At first prednisone worked great but hitting on the right dose and when to take it is a problem. I am completely exhausted. I think you are on to something. I think I am depressed and I have to find my way out of it.

@marymckeith, If the prednisone worked great when you first started and it's not working now, maybe you tapered down to quickly or too much. Slow tapering and only when your pain level is acceptable in the morning is what worked for me. I kept a daily log with my level of pain when I got up in the morning and if it was time for me to taper and my level of pain was greater than 2, I held the taper for a few days to a week to see if it was better. If it got better, I tapered down to my next level. Determining how much to taper can be different for each of us. There is another discussion that might be helpful.

--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Do you keep a daily log?

Thanks for replying. When I first get up there is little pain or no pain but when I take the med the exhaustion sets in. The pain level seems acceptable. I have upped from 17.5 back up to 20. Just can't understand the weakness. At first it was great.

Had something similar happen. When I wake in the morning I feed the dogs and taking them outside. Twenty minutes later I turned on the pool filter, and out of no where I get this feeling of severe fatigue and then a sensation of weakness in my arms. I noticed also that I was not tolerating the heat too well. I had several ounces of orange juice and as quick as all my symptoms came on, they reversed.
I believe that Prednisone itself can cause weakness, and of course the PMR symptoms. Good luck with everything. Let me know what your outcome is and if your able to pinpoint your weakness. Thanks.

Hi @marymckeith, I'm sorry to hear of your struggle. The black hole for me was psychological, I think, depression. I got out of it because I was in a situation that caused me to experience my power and I didn't collapse. It made me feel alive. It involved gardening. I had to pull a load of weeds in 40 minutes before a contractor brought in backfill for a retaining wall on short notice. I was surprised I could do it.
Prednisone, at the right dosage, is supposed to resolve symptoms of PMR/GCA dramatically. This was my experience. It doesn't mean the disease is gone, but the symptoms are relieved. If symptoms don't respond to prednisone, doctors are advised (Cecil and Goldman's Textbook of Medicine) to consider alternate diagnosis - infection, malignancy,connective tissue disorder, hypothyroidism.
Has your doctor considered any alternatives?

Thank you for the encouragement and responding. It means a lot.

Had the bilateral temporal arterial biopsy and was surprised at the size of the incision, however, it looked a lot worse than it felt. The pain was not extreme. Just made everything sore from my top jaw to the top of my head. Only took 2 Tylenol after the procedure and now I feel okay. Will have results for Giant Cell Arteritis within 3 to 5 business days.