Pro help. If you recall I posted that my ESR went from 6 to 17 to 27 to 31. I was on 10 mg when this started I had been on 10 mg for three weeks when the ESR started to move My rheumatologist felt that was normal and I should reduce to 9 mg of prednisone. I did not think that was normal and did not reduce. As I had mentioned in my previous post I went up to 12.5 for three days and my ESR went down to 15. You had indicated that it was probably a reasonable idea to go up to my last number where I was doing well. Yesterday before knowing what my ESR was at I think I got more nervous and my headache got worse. I almost always have a headache on the left side and a stiff neck. I am a very tense person and I do take something for that tension but probably not enough. So I thought I was having a GCA headache. My rheumatologist yesterday wanted me to take 40 mg of prednisone for a week. This story gets even more complicated so why don't I just asked the question he's mad at me because I'm not listening to him but he also gave me bad advice to reduce my prednisones to 9 when my ESR and CRP was going up. As it turned out my not listening to him and going back up to 12.5 helped me. This is my fifth rheumatologist in a year and a half and none of them have the knowledge of this forum. My internist agrees with me that if the sed rate is going down as well as the CRP I should stick with the 12.5. My rheumatologist still wants me to go up to 40. I see no sense to do this except for this fear because he has because 4 patients went blind. I tend to think they went blind because he let their sed rate go to what he believes is normal which is half your age +10. For me that would be 45 when I am comfortable and have been under 10 for the past year. My internist would not agree to treat me unless I was under the care of a rheumatologist. But certainly is willing to give his opinion and advice. I think I will stay with the 12.5 and check bloods in another few days. My blood moves first and quickly as it did with the PMR my symptoms usually follow. I will be traveling next week and I have purchased a house in the northern part of the US because the summers in Florida are horrific. I do not want to be on 40 mg because I am very sick on 40 mg and I don't believe it's necessary. Certainly if like numbers are up again and/or I have any symptoms I would increase but seems like 15 mg would be the next step. Do I look for another rheumatologist? I know when I see him on November 8 he will expect me to be on 40 mg. There are so few cases of GCA in the US that it surprises me one young rheumatologist would have four patients that went blind. It scares me as well. Thank you for your help. Marilyn
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