1. < Polymyalgia Rheumatica (PMR)

Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.

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654321 | @654321 | Nov 20, 2019
In reply to @654321 "Also the sed rate is monitored plus a biopsy Lida was done with me. CRP is..." + (show)
@654321

Also the sed rate is monitored plus a biopsy Lida was done with me. CRP is also monitored. That s how I go up and down with prednisone.

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Sorry thought I proofed my reply , but didn t quite get it clear enough. I get so excited to talk about this , because nobody really knows what I’m talking about when T A is mentioned.

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 20, 2019
In reply to @crhp194 "It is my understanding with temporal, you have pain in your temples, headaches jaw pain,and other..." + (show)
@crhp194

It is my understanding with temporal, you have pain in your temples, headaches jaw pain,and other aches. For GCA, I had no symptoms and it just means that the cells are large. My GCA was discovered during surgery and before that I was totally unaware I had anything. John Bishop can probably explain this better.

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The Mayo site says Temporal Arteritis and Giant Cell Arteritis are basically 2 different names for the same condition. I think what's confusing for the layman (me being one of them!) is that we patients say wait...with one you have pain in your temples - it's not the same.
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758
For my PMR the doctor monitors my sed rate and CRP which I believe are indicators but may need a doctor to interpret.

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2 replies
654321 | @654321 | Nov 20, 2019
In reply to @johnbishop "The Mayo site says Temporal Arteritis and Giant Cell Arteritis are basically 2 different names for..." + (show)
@johnbishop

The Mayo site says Temporal Arteritis and Giant Cell Arteritis are basically 2 different names for the same condition. I think what's confusing for the layman (me being one of them!) is that we patients say wait...with one you have pain in your temples - it's not the same.
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758
For my PMR the doctor monitors my sed rate and CRP which I believe are indicators but may need a doctor to interpret.

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Yes I go every three months for bloodwork.
On 6 mg of prednisone and can t seem to go any lower. Got to 5 once Sed and CRP jumped pretty high so back to 6. I m doing ok but would love to come off of it.

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geniecm | @geniecm | Nov 21, 2019
In reply to @johnbishop "The Mayo site says Temporal Arteritis and Giant Cell Arteritis are basically 2 different names for..." + (show)
@johnbishop

The Mayo site says Temporal Arteritis and Giant Cell Arteritis are basically 2 different names for the same condition. I think what's confusing for the layman (me being one of them!) is that we patients say wait...with one you have pain in your temples - it's not the same.
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758
For my PMR the doctor monitors my sed rate and CRP which I believe are indicators but may need a doctor to interpret.

Jump to this post

I began this journey with an ESR of 51 taken by my NEW primary Dr. He put me on 10 mgs of Prednisone. After some research online I panicked and realized that with all my symptoms including the problems with my eyes, that this condition could be serious. I have a rheumatologist that I go to for my hands, made an appt. She immediately made an appt for a biopsy for me and gave me a prescription for 50 mgs of Prednisone that I should take the minute the biopsy was over. Two days later she called with results positive for GCA. Latest 11/5 ESR and CRP are about the same as my first visit with her although they dropped on 9/24. I was away and need to make appt. for blood work soon. Also looking for another new primary! Hope this makes sense...all caused by a second shingles vaccination.

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2 replies
geniecm | @geniecm | Nov 23, 2019
In reply to @geniecm "I began this journey with an ESR of 51 taken by my NEW primary Dr. He..." + (show)
@geniecm

I began this journey with an ESR of 51 taken by my NEW primary Dr. He put me on 10 mgs of Prednisone. After some research online I panicked and realized that with all my symptoms including the problems with my eyes, that this condition could be serious. I have a rheumatologist that I go to for my hands, made an appt. She immediately made an appt for a biopsy for me and gave me a prescription for 50 mgs of Prednisone that I should take the minute the biopsy was over. Two days later she called with results positive for GCA. Latest 11/5 ESR and CRP are about the same as my first visit with her although they dropped on 9/24. I was away and need to make appt. for blood work soon. Also looking for another new primary! Hope this makes sense...all caused by a second shingles vaccination.

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Blood work scheduled for 12/3... Meanwhile I am miserable with both GCA symptoms and Prednisone side effects. Headache, temple pain, jaw pain, teeth sensitivity, fatigue, blurred vision, irritability, trouble thinking, speaking and walking. Trouble sleeping, thin skin, bruise easily and bleed profusely..fun, fun! plus my tongue feels like it has wiped a dirty floor. Down to 30 mgs from 50 mgs (8/26/19).

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3 replies
jhinia | @jhinia | Nov 23, 2019
In reply to @geniecm "Blood work scheduled for 12/3... Meanwhile I am miserable with both GCA symptoms and Prednisone side..." + (show)
@geniecm

Blood work scheduled for 12/3... Meanwhile I am miserable with both GCA symptoms and Prednisone side effects. Headache, temple pain, jaw pain, teeth sensitivity, fatigue, blurred vision, irritability, trouble thinking, speaking and walking. Trouble sleeping, thin skin, bruise easily and bleed profusely..fun, fun! plus my tongue feels like it has wiped a dirty floor. Down to 30 mgs from 50 mgs (8/26/19).

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As they say - I feel your pain. The Prednisone side effects are awful but if you are at 30mg you should be close to the point where they become tolerable. When I checked into this forum I was miserable and @tinkerbell told me I should be able to sleep again when I got to 20mg. She was right. Even at 25mg I experienced a big quality of life improvement. So maybe on 12/3 you will be able to drop it a little and start feeling better.
I had all the symptoms you mention but my headaches and jaw pain went away when I started on 60mg. My ESR was 91 when this all started in late April. I'm now at 12.5mg and I'm going to 10mg on Dec 1st with blood tests scheduled in mid December.
That probably doesn't help much but I just wanted to encourage you to hang in there because it does get better.

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3 replies
captainkenny | @captainkenny | Nov 23, 2019

I guess I was lucky to have had excellent quick diagnosis and care, and no symptoms or side effects from the Prednisone. I started on the two year reduction program at 40 mg which eliminated my headache and jaw pain in two hours, was completely off the Prednisone and Methotrexate last June 1st, and only need my blood checked every six months. Good luck.

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654321 | @654321 | Nov 23, 2019
In reply to @jhinia "As they say - I feel your pain. The Prednisone side effects are awful but if..." + (show)
@jhinia

As they say - I feel your pain. The Prednisone side effects are awful but if you are at 30mg you should be close to the point where they become tolerable. When I checked into this forum I was miserable and @tinkerbell told me I should be able to sleep again when I got to 20mg. She was right. Even at 25mg I experienced a big quality of life improvement. So maybe on 12/3 you will be able to drop it a little and start feeling better.
I had all the symptoms you mention but my headaches and jaw pain went away when I started on 60mg. My ESR was 91 when this all started in late April. I'm now at 12.5mg and I'm going to 10mg on Dec 1st with blood tests scheduled in mid December.
That probably doesn't help much but I just wanted to encourage you to hang in there because it does get better.

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It s interesting how these are all so similar. Tinker bell has been so good to advise .

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654321 | @654321 | Nov 23, 2019
In reply to @geniecm "Blood work scheduled for 12/3... Meanwhile I am miserable with both GCA symptoms and Prednisone side..." + (show)
@geniecm

Blood work scheduled for 12/3... Meanwhile I am miserable with both GCA symptoms and Prednisone side effects. Headache, temple pain, jaw pain, teeth sensitivity, fatigue, blurred vision, irritability, trouble thinking, speaking and walking. Trouble sleeping, thin skin, bruise easily and bleed profusely..fun, fun! plus my tongue feels like it has wiped a dirty floor. Down to 30 mgs from 50 mgs (8/26/19).

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So sorry it is really aggravating ! You can do this , so glad you are on this post. It s been helpful and really hope it helps make your pain a little easier .

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1 reply
geniecm | @geniecm | Nov 23, 2019
In reply to @jhinia "As they say - I feel your pain. The Prednisone side effects are awful but if..." + (show)
@jhinia

As they say - I feel your pain. The Prednisone side effects are awful but if you are at 30mg you should be close to the point where they become tolerable. When I checked into this forum I was miserable and @tinkerbell told me I should be able to sleep again when I got to 20mg. She was right. Even at 25mg I experienced a big quality of life improvement. So maybe on 12/3 you will be able to drop it a little and start feeling better.
I had all the symptoms you mention but my headaches and jaw pain went away when I started on 60mg. My ESR was 91 when this all started in late April. I'm now at 12.5mg and I'm going to 10mg on Dec 1st with blood tests scheduled in mid December.
That probably doesn't help much but I just wanted to encourage you to hang in there because it does get better.

Jump to this post

Thank you so much for your response! It does help me to understand that others have gone through what I am experiencing. Your support is appreciated and needed. I am grateful.

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