I have been looking out onto our back garden and the next door field, it is one of those glorious clear, crisp and icy mornings that remind me of being young and rushing out and sliding everywhere. What joy.
However I digress, I was diagnosed with PMR in Late May 2016 and started on 30 mgs prednisolone and other than one blip I have been pain free. Unfortunately I was diagnosed with GCA in September 2016 and started on 60mgs which has worked well.
I am currently taking 20mgs.
The main side effects I have experienced are the most commonly recognized, I have very poor sleep, my body unfortunately has not readjusted and I have had a rapid onset cataract and have had surgery and of course the dreaded fatigue, fuzzy head and shakes. I accept them all now, I do get along with life but it did take until about 3 months ago so I sympathize with newly diagnosed members who rage and say, "Not me, I will be off prednisolone in a year"!
My question is about the symptoms others with GCA still have or not whilst tapering.
I am aware that with PMR we look for at least a 70% reduction in symptoms and during tapering use that as our guide. What I am not sure about is that also true for GCA ?
The reason I ask is if it is also true for GCA is that 0-30% that will hopefully now be discomfort rather than pain caused by inflammation still causing damage so close to the brain?
I have fleeting symptoms in the morning and on and off during the day. They never last for long, a minute at the most and I would describe as mild. They are however definitely GCA, the pain in the occipital area moving up in front and behind my ear, in my ear and around the frontal lobe. Tight band around my head and tender scalp. I have permanent jaw pain but that I think is arthritis and I am seeing my dentist and wearing a gum shield.
I don't want in anyway to suggest that this is real pain it isn't and if I didn't have GCA I would think, "Oh what, this again", but not do anything about it, certainly not take paracetamol or see a GP. But I do have GCA and I am just not sure if most members with this condition would describe themselves in a similar way or not.
It does cause me some concern and like many others on this journey I have lost confidence in my own decision making.
Many thanks Judy