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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Posted by dar9216 @dar9216, Jan 7, 2021

I was diagnosed a little over two years ago with GCA (Giant Cell Arteritis) and polymyalgia. Down to 1 mg of Prednisone/day, started at 60 mg. Anyone else have this combination?

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maryo1952 | @maryo1952 | Jul 30 3:14pm

I was diagnosed in May 2022. I did not have many typical symptoms, but I did have unexplained weight loss, fatigue & my neck shoulder area was stiff. My Mayo Clinic doctor decided to run tests just in case & it popped up right away. I was started on 40mg of prednisone & Actemra infusions ever 4 weeks. My inflammation was completely normal after 1 month. I was tapered off the prednisone just 4 months later but I’m still taking the Actemra infusion every 4 weeks. I’m hoping that someday I’ll be off the Actemra for good. FYI, I’m 72.

REPLY
1 reply
lilyonm | @lilyonm | Jul 31 10:57am
In reply to @maryo1952 "I was diagnosed in May 2022. I did not have many typical symptoms, but I did..." + (show)
@maryo1952

I was diagnosed in May 2022. I did not have many typical symptoms, but I did have unexplained weight loss, fatigue & my neck shoulder area was stiff. My Mayo Clinic doctor decided to run tests just in case & it popped up right away. I was started on 40mg of prednisone & Actemra infusions ever 4 weeks. My inflammation was completely normal after 1 month. I was tapered off the prednisone just 4 months later but I’m still taking the Actemra infusion every 4 weeks. I’m hoping that someday I’ll be off the Actemra for good. FYI, I’m 72.

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@maryo1952 What were the tests the Mayo Clinic doctor ran? Were they the standard TAB (temporal artery biopsy), blood work (SED/CRP/ANA) or other tests?

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maryo1952 | @maryo1952 | Jul 31 4:49pm

I did not have a biopsy. I had a CT scan with dye. I’ve had several Scans with dye since & improvement is noted each time. The rheumatologist, a woman, was fabulous. I wished she could be my doctor here in Chicago, but now I’m under the care of another fabulous female rheumatologist at Rush Hospital.

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tigre24 | @tigre24 | Oct 16 6:30am

Yes I was just diagnosed with GCA after having PMR for over a year. Diagnosis confirmed by double temporal biopsies. Started on massive dose of iv prednisone after a double vision in one eye followed
By 60 mg. Now tapering weekly following the AIACTA study. Hoping to start Actemra weekly injections this week but help up with doc and insurance issues.

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1 reply
tigre24 | @tigre24 | Oct 16 6:30am
In reply to @tigre24 "Yes I was just diagnosed with GCA after having PMR for over a year. Diagnosis confirmed..." + (show)
@tigre24

Yes I was just diagnosed with GCA after having PMR for over a year. Diagnosis confirmed by double temporal biopsies. Started on massive dose of iv prednisone after a double vision in one eye followed
By 60 mg. Now tapering weekly following the AIACTA study. Hoping to start Actemra weekly injections this week but help up with doc and insurance issues.

Jump to this post

Sorry following the GIACTA study

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jlo2252 | @jlo2252 | Oct 25 8:43am
In reply to @bradninchgirl "It's been discovered that Tinnitus comes from the brain not the ears. I am trying Menthol..." + (show)
@bradninchgirl

It's been discovered that Tinnitus comes from the brain not the ears. I am trying Menthol essential oil as it does good things for the brain. It only took three days of my using it for the loud orchestra in my head to close up for the night. I sometimes get a little faint music but none of the full orchestra performance of the past. Don't expect your ENT to have heard of this it's a new discovery and, I believe, as it's classified as an alternative medicine they can't talk about it.

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@bradninchgirl

Thanks so much for this information!! My husband has very bad tinnitus and he has some hearing loss as well. So he is understandably one grumpy guy!! Going to give this a try!

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joan7 | @joan7 | Oct 25 10:20am
In reply to @bradninchgirl "It's been discovered that Tinnitus comes from the brain not the ears. I am trying Menthol..." + (show)
@bradninchgirl

It's been discovered that Tinnitus comes from the brain not the ears. I am trying Menthol essential oil as it does good things for the brain. It only took three days of my using it for the loud orchestra in my head to close up for the night. I sometimes get a little faint music but none of the full orchestra performance of the past. Don't expect your ENT to have heard of this it's a new discovery and, I believe, as it's classified as an alternative medicine they can't talk about it.

Jump to this post

Menthol Essential Oil is that a supplement or an ear drop, and how much do you take? My brother has suffered with tinnitis for many many years, so it wouldn't for him to try it. Look forward to hearing from you.

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