I have been diagnosed with PMR for 4 years and have been on prednisone the whole time. I have learned to reduce slowly because I will flare if I move too quickly. Recently I have been on 2mg a day for the last 6 months feeling good and ready to move to a lower mg. I am an active 69 yr old and walk, hike or bike over 5 miles each day.
I was on an extended trip, traveling and then taking care of elderly moms. It was full of very stressful situations with many moving parts. I started with a temporal head ache that lasted over a week that would wake me up in the middle of the night with "brain freeze" (like what you get when you eat ice cream too fast) and could not sleep. After a week of living with it I contacted my rheumatologist long distance and she prescribed 40mg of prednisone to start immediately and to go to the ER if I developed further symptoms. Within 4 days I developed tired jaw and blurry vision. I went to the ER.
They immediately gave me a CT scan and started 1000mg prednisone IV for the next 3 days, taking regular blood tests each day. I would continue with 60mg a day for the next 2 weeks after that and reduce by 10 mg every two weeks. They transported me to another hospital that had a rheumatologist, neurologist, ophthalmologist, and vascular surgeon on staff. These doctors found no damage to my optic nerve nor any brain trauma. My inflation markers were high (as usual for me) and white blood counts were elevated along with glucose levels. These specialists consulted and decided I should have a biopsy to confirm a diagnosis of GCA.
However, the rheumatologist failed to schedule the surgery with the vascular surgeon, during the last window of availability, and was not able to get it done for another 5 days. The team felt that I would have too much steroid in my body by then to give an accurate picture and that my treatment would remain the same regardless if it was negative of positive due to the nature variability of the test.
I am back in my own home turf now awaiting appointments to see my own doctors here.
Questions I'd like insight on are:
1. Can GCA be triggered by highly stressful situations? Could this all be stress reactions and not GCA at all? Have others been triggered by stress?
2. How will this very high dose of prednisone for this long affect my body long term? How can I avoid the tremendous amount of weight gain I expect? Does this seem like over kill of prevention? Will GCA continue to be in my future? Will I always be on prednisone?
3. Should I have quickly transferred to another hospital that could have done the biopsy test? How would that have made a difference in my future treatment?
4. How do you best describe PMR and this possible GCA to family and friends and why your personality and body may be affected by the extreme medications?
Any thoughts, feelings, or opinions would be welcomed. Thank you for reading.
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