Interesting development today. I called the doctor’s office and told a nurse that what the doctor has asked us to do - let him develop a headache, go get labs while I call the doctor or if it happens outside of business hours to go to the ER - is just not working. And that her treatment plan was not sustainable. This nurse took the time to really listen. I explained he’s on 80 mg and that his doc (rheumatologist) said he must take it all at once. I explained that we have gone around and around about this issue and she just won’t budge.

The nurse took the initiative and spoke with the Chief of Rheumatology who said 80 mg is too high a dose to take all at once and that we should split the dose. She said she is fine with us splitting it any way that works to eliminate the headaches.

Wow! I think I will take the advise of a Chief of Rheumatology over our current doctor who initially told me she thought I was wrong and that she didn’t think he had GCA. I had to fight to get the biopsy which came back positive. Then he ends up being resistant to treatment, hospitalize and with 1200 mg IV infusions of methylprednisolone.

It’s been a ride. He first had PMR diagnosed back in May.