Adjusting to life with temporal arteritis

@bgaro - I went down 10 mg every 2 weeks until I got to 20. I starting feeling terrible and I had swelling on my cheekbone and in the temple area. I called the doctor but could not get in touch with her so I went back up to 20. I was on the 17.5 for 1 1/2 weeks when all of this happened. I kept really good notes on my calendar. I was really afraid to start the taper again but the doctor said I had to continue down. I told the doctor I only wanted to go down 1 mg at a time and she said that was fine. When I got to 10, I continued down at 1 mg every 2 weeks. When I finished 7 mg, I went to 6 1/2 and did 1/2 every 2 weeks until the end. My husband is a research person and did hours of research on tapering. We were really surprised I had the problems at 17.5. One thing we read said not to go down more than 10% at a time and that is why I changed over to 6 1/2 from 7. I had no problems after the initial problem at 20. It is a long journey. Keep us posted on your progress.

What I mean is....when I was first diagnosed I was very ill. The pain in my head and jaw were gone after the first 12 hours of being on prednisone. After 3.5 years of being on prednisone the blood work is stabilizing but they are now testing me for adrenal insufficient . Apparently my cortisol level is very low. One more thing to deal with...Yuk! Getting pretty sick of this.

@MLeeB - Hi again - The first thing I read said you had been on Prednisone for 5 months. I am so sorry to hear that you are having so many problems. I had the ACTH blood test when I got down to 5 mg to see if my adrenal gland was working. It was working and they thought I would do fine which I did. If you have been on Prednisone for 3.5 years now, were you on it for another reason or just the Giant Cell Arteritis.

How were you able to do the 1 mg. What is the lowest dosage of pred. This is my plan also. Very slowly. Thx

Yes, I asked about adrenal problems and doc told me not to worry about it. That is an answer I do not like. Wow. 3 1/2 years on prednisone. This seems to manifest itself in so many different ways. Very difficult. I’m out of state right now but when I get home i have an appt with a neurovascular dr and a neuro opthamologist. I hope they know a little bit more about this.

@bgaro - They really can’t do any testing regarding your adrenal gland until you get down to 5 mg. The Prednisone makes your adrenal gland go to sleep. It gets a rest and then you have to just hope it wakes up. I did have to ask for the ACTH test at Mayo Clinic and then they referred me to their Endocrinologist and she ordered the test. I was on the Prednisone for 1 1/2 years and was very happy when the test came back that my adrenal gland was ready to work.

I’ll bet you were. Just another thing to worry about. Thanks for the info on the prednisone

@bgaro - I went down 10 mg every 2 weeks until I got to 20. I starting feeling terrible and I had swelling on my cheekbone and in the temple area. I called the doctor but could not get in touch with her so I went back up to 20. I was on the 17.5 for 1 1/2 weeks when all of this happened. I kept really good notes on my calendar. I was really afraid to start the taper again but the doctor said I had to continue down. I told the doctor I only wanted to go down 1 mg at a time and she said that was fine. When I got to 10, I continued down at 1 mg every 2 weeks. When I finished 7 mg, I went to 6 1/2 and did 1/2 every 2 weeks until the end. My husband is a research person and did hours of research on tapering. We were really surprised I had the problems at 17.5. One thing we read said not to go down more than 10% at a time and that is why I changed over to 6 1/2 from 7. I had no problems after the initial problem at 20. It is a long journey. Keep us posted on your progress.

I have also had problems lowering the dose of prednisone. I have had so many problems that After I got to 15mg my doctor had me go down 1/2 mg a month. I made it down to 7 mg and again felt so horrible that I went back up to 12 with my doctors approval. I am now just at 11.5 mg and am back on the 1/2 mg a month reduction plan