Adjusting to life with temporal arteritis

Posted by MLeeB @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

@tinkerbell

@bgaro-The surgeon that did my biopsy said if the first side came out negative then they would have gone to the other side. I was so happy the right side came out positive so they did not have to do the other side. None of the doctors I went to in Orlando, Florida knew what was wrong with me. Finally we drove over 2 hours to Mayo Clinic in Jacksonville and went to the Emergency Room. I was diagnosed in 1 1/2 hours and they set the biopsy for the next day. Your Sed rate was a lot higher than mine was. The most important thing you can do is taper down slowly. I had problems from 20 mg to 17 1/2 mg and then had to go back to 20 for a few weeks and then went down 1 mg every 2 weeks to 10. It was a slow process but worth it in the long run. If you have any questions along the way let me know. It is a long journey and then of course the weight gain. You will gain weight in areas you would not have thought about. Good Luck!! Have you ever had the old Shingles Vaccine? They thought the reason I did so well was because I had the Shingles Vaccine.

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Would you believe they couldnt find a vein for biopsy on one side. They did the other side but the 15 minute procedure took 1 hour and 15 min. Then was told by rheumatologist that the sample was too small. No never had the shingles shot. I’m happy to hear that you tapered that slowly. One of my drs said to go go from 60 tapered down to 40. Think that is way too fast. . When you went to 17 1/2 what symptoms did you have that required you to go back to 20.

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@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.

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@MLeeB – When you say you are getting better slowly what do you mean. My pain and headaches were gone about 4 hours after getting on 60 mg of Prednisone. I did have a lot of pain after the biopsy but that went away in a few days.

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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.

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@gingers Sunshine now yea but I know it's not over

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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.

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@tinkerbell

@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.

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

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@MLeeB

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.

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@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.

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@tinkerbell

@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.

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@MLeeB – I just looked at the date on the post I had read. It was 2016. That is so long to be on Prednisone – 3.5 years. Are they going to be putting you on a different steroid?

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@bgaro

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

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@bgaro – They make 1 mg tablets of Prednisone. You end up doing a lot of cutting.

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@bgaro

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.

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@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.

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@tinkerbell

@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.

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

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@bgaro

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

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@bgara- take care of yourself.

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@tinkerbell

@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.

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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

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@bt56

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

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@bgaro – Tapering off of Prednisone is certainly a problem for most of us. I guess with the goal of getting off the Prednisone it really does not matter how we get there. 1/2 of a mg is better than not getting off at all. I would recommend that when you make it to 5 mg you get the ACTH Stimulation test. At least you will know if your adrenal gland is ready to do its job.

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