First, thank you so much for everyone's posts. You have no idea how much I learn and take comfort from all of you. I am still a relative newbie - diagnosed after a year in January and have been on 35-40mg. prednisone for over 5 months now.
I have also had to take percocet to help keep the pain down. The higher the prednisone - 40mg., the less pain help and vice versa. Still at 40mg I have to take a few a day. Oddly, the pain help is useless unless I am on prednisone.
My dilemma: it doesn't appear that doctors I have found in the US are that educated on how to dose, so I chose the 40mg (vs the normal 60-80 to start on GCA) because I struggle so much with the steriod side effects. They are really unbelievable and unrelenting each day. When I go down to 37.5 or 35mg. (you'd think that wouldn't be such a big deal as it's in the 'no less than 10% principle' the pain is back considerably.
I have now gone back up to 40mg. and struggle mightily with intense side effects.
Many of you have said the steriods just reduce the inflammation and doesn't cure anything. So, I have been taking the track of taking the minimum steriod I need to get by each day and supplementing with the percocet.
So, my questions are:
- Am I on a strong enough dose to make progress on remitting this disease as quickly as possible? Or, it doesn't really matter what dose you are on as long as you can withstand the pain?
- By staying at 40mg. and trying to decrease very slowly, am I just flaring and causing more problems?
- Isn't nearly 6 months at 40 - odd mgs. a long time and I should be tapering considerably more by now?
Thank you so much for any advice.