This is part of an email I received from a friend who was diagnosed with GCA 11 years ago and still takes 1 mg of prednisone per day. I emailed her in New Hampshire because of my concerns about 'too rapid a taper'. I wondered what she experienced.
These are her words, a portion of her email to me:
This whole phase you are in is attempting to reduce the dosage as quickly as possible and getting the blood picture (sedimentation rate) back to normal numbers. If it is too rapid a process the blood picture will show that and those numbers going in the wrong direction will mean having to increase the meds dosage….for me that happened quite often and I had to raise the dosage and remain there for weeks to months before attempting the reduction, again. If you are dropping fairly rapidly in dosage and the blood picture is good then enjoy that success. No matter what, you will have to suffer the symptoms of meds reduction….so keep the pillow, throw and cat nearby. You have to look beyond the necessary process to being prednisone free….or at least very low dosage. Until that happens the GCA is in control. Just keep being thankful there is this one, and only one, medication available to beat this disease. Otherwise, you….and I…..would both be dead. Blunt, but true.
It is me again...I find her perspective so encouraging and hope some of you do too. I can deal with things and take a lot of 'you know what' when I know it is part of the journey to get to the prize. She is a vital 85 year old and has fought and beat cancer too. I love her 'starch'~!
I'm so thankful for ALL of you....the journey is lighter not being alone~!👬👬👬👬👬👬👬👬👬👬 The Forum Rules!!!
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Grammy80
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This has helped me realize even more that a slow taper is the way to go. It truly is a journey not a race to be off Prednisone. Thank you for the words of this brave lady. I feel so at peace with all the wonderful advice I have received from all on this site. Thank you.
Last September when I was on 125mg of prednisone per day and my numbers were not affected after a month and my blood pressure and sugar rose and the pain increased my rhuematologist admitted me to the hospital for IV methylprednisolone, 1000mg, and observation because he considered me at a high risk for a stroke. My head felt like it was going to take off on its own. I had experienced a stroke at 42. My friend was 74 when GCA became her boss and I am 79...I think strokes are more of a concern just because of the condition of our arteries at these later stages.
When my friend was diagnosed and treated 11 years ago there was only prednisone...and as we all know, trial and error and dosage manipulation...and you hope that you will get to a manageable point. Her point, the way I interpreted it, was 'at least we have prednisone' and there would be no hope if the disease was untreated. She can always find something to be grateful for or just develop the courage to 'ride it out.'
I know she didn't mean to imply it was a death sentence. 🌸🌸
No she probably didn’t mean it, but compared to many other illnesses, GCA is not the worst thing to deal with...and sometimes in the midst of what’s going on, we forget that. Human nature.
Plus I’m sure in the bad old days lots of people “got through” GCA and PMR without medication....but it wouldn’t have been pleasant that’s for sure.
She has been a friend since the 1970s...I worked for her husband...she was an RN but they had 6 children. I've always admired her appreciation for life, her faith and that strong core of courage!! Thanks~Jackoh
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