1. < Polymyalgia Rheumatica (PMR)

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

krueg | @krueg | Apr 25, 2023
In reply to @scpartain "During my first bout with PMR, I did not see any doctors who knew how to..." + (show)
@scpartain

During my first bout with PMR, I did not see any doctors who knew how to treat PMR and only received prednisone on a sporadic basis; a pack of medrol now and then when I complained. When the symptoms returned, it took me several months to finally see a rheumatologist who prescribed 15 mgs. which relieved my symptoms almost instantly. I began to decrease in two weeks after starting the prednisone and was able to taper off in three months, as the doctor prescribed. Both bouts lasted about the same amount of time: eight or nine months total, less than a year. I'm hoping it won't come back. The rheumatologist advised against strenuous exercise, and especially stair climbing, to avoid another relapse.

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Wow you we able to get off Prednisone really quickly. That is fantastic and i hope you stay in remission👍

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1 reply
scpartain | @scpartain | Apr 25, 2023
In reply to @krueg "Wow you we able to get off Prednisone really quickly. That is fantastic and i hope..." + (show)
@krueg

Wow you we able to get off Prednisone really quickly. That is fantastic and i hope you stay in remission👍

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Thanks so much! Good luck to you in your PMR journey!

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Teri | @tsc | Apr 25, 2023
In reply to @krueg "I would like to know if anyone has info regarding people who have long remission from..." + (show)
@krueg

I would like to know if anyone has info regarding people who have long remission from gca and pmr. It seems like I can't find anyone who has accomplished this. For having to go thru years of Prednisone i would hope that once in remission it would stay that way. I know there is no current cure for these diseases but it seems like relapses happen often with only a short remission period. I'm trying to stay positive and hopeful

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Hi @krueg, PMR and GCA are described as "self-limiting diseases" that eventually burn themselves out. My mother-in-law got GCA when she was in her 80s. I wish I had paid more attention, but she had it for a while, maybe a few years, then it stopped. I remember she told me that her doctor said all traces were gone. She lived to nearly 100 and did not relapse.

I've been in remission since October. I try to be careful, not stress myself out or do too much as I want to avoid a relapse as much as possible. I wish you the best.

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1 reply
krueg | @krueg | Apr 26, 2023
In reply to @tsc "Hi @krueg, PMR and GCA are described as "self-limiting diseases" that eventually burn themselves out. My..." + (show)
@tsc

Hi @krueg, PMR and GCA are described as "self-limiting diseases" that eventually burn themselves out. My mother-in-law got GCA when she was in her 80s. I wish I had paid more attention, but she had it for a while, maybe a few years, then it stopped. I remember she told me that her doctor said all traces were gone. She lived to nearly 100 and did not relapse.

I've been in remission since October. I try to be careful, not stress myself out or do too much as I want to avoid a relapse as much as possible. I wish you the best.

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I sure hope mine burns out. Thank you for sharing. I'm so glad I joined mayo connect. It is so nice to hear from people who are experiencing the same thing.

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1 reply
redboat | @redboat | Apr 26, 2023
In reply to @krueg "I sure hope mine burns out. Thank you for sharing. I'm so glad I joined mayo..." + (show)
@krueg

I sure hope mine burns out. Thank you for sharing. I'm so glad I joined mayo connect. It is so nice to hear from people who are experiencing the same thing.

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My rheumatologist says I have PMR with "presumed" GCA. I was diagnosed in Feb 2023, and originally was given 20 mg//day of Prednisone.

However, I experienced severe inflammation that resulted in an emergency room visit, after which the ER doctors upped the dosage to 60 mg/day of Prednisone.

I am now being treated with weekly shots of Actemra and tapering off Prednisone. I'm currently taking 35 mg/day. If there are no relapses, I will be down to 10 mg in June, then completely off of Prednisone in October.

Before treatment, the pain was excruciating, so Prednisone was very helpful, but the side effects are very difficult.

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2 replies
krueg | @krueg | Apr 26, 2023
In reply to @redboat "My rheumatologist says I have PMR with "presumed" GCA. I was diagnosed in Feb 2023, and..." + (show)
@redboat

My rheumatologist says I have PMR with "presumed" GCA. I was diagnosed in Feb 2023, and originally was given 20 mg//day of Prednisone.

However, I experienced severe inflammation that resulted in an emergency room visit, after which the ER doctors upped the dosage to 60 mg/day of Prednisone.

I am now being treated with weekly shots of Actemra and tapering off Prednisone. I'm currently taking 35 mg/day. If there are no relapses, I will be down to 10 mg in June, then completely off of Prednisone in October.

Before treatment, the pain was excruciating, so Prednisone was very helpful, but the side effects are very difficult.

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You are doing great in your taper. I have been on actemra since mid October for my first infusion. I have had a total of 7 so far. I too started at 60mg when my omr morphed into gca in September. I was down to 10mg but had to go back up to 12.4mg and i might have to increase it. I'm not sure if the infusions are working as it should but it has elevated my cholesterol to very high so m thinking of stopping. M talking to my dr on Friday about this. I wonder if there is a difference between getting it by infusion or self injections. Hope you continue feeling better🤞

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1 reply
krueg | @krueg | Apr 27, 2023
In reply to @redboat "My rheumatologist says I have PMR with "presumed" GCA. I was diagnosed in Feb 2023, and..." + (show)
@redboat

My rheumatologist says I have PMR with "presumed" GCA. I was diagnosed in Feb 2023, and originally was given 20 mg//day of Prednisone.

However, I experienced severe inflammation that resulted in an emergency room visit, after which the ER doctors upped the dosage to 60 mg/day of Prednisone.

I am now being treated with weekly shots of Actemra and tapering off Prednisone. I'm currently taking 35 mg/day. If there are no relapses, I will be down to 10 mg in June, then completely off of Prednisone in October.

Before treatment, the pain was excruciating, so Prednisone was very helpful, but the side effects are very difficult.

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Quick question, were you put on an antibiotic by your doctor until your dosage of prednisone gets below 20mg? I was told this is due to the increased risk of a very serious but rare infection (i can't remember what it was). I was put on Bactrim and it increased my liver lab tests while on ACTEMRA. Went off of it and everything was fine.

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1 reply
janielou56 | @janielou56 | Apr 28, 2023
In reply to @karinaph "I’m in the same boat. Started with PMR, I think, then had the GCA symptoms but..." + (show)
@karinaph

I’m in the same boat. Started with PMR, I think, then had the GCA symptoms but no diagnosis. I went for a few months before my Gen practice MD ran tests and found abnormalities in my blood work up but not definite PMR, decided to put me on 15 mg Prednisone and within 24 hours I was feeling somewhat normal. As I was tapering ( now know I went too fast) a couple of months later I got the head pain, jaw stiffness, and visual distortions. My doc put me immediately back to 15. Symptoms disappeared immediately. She didn’t bother to get a biopsy ( covid related) and said my symptoms were enough to treat it as GCA. So, I am quite concerned about the GCA, more than the PMR. I’m slowly tapering, and I mean snail pace. 10 mg now and only going down .5 /3-4 weeks. I too hate the prednisone but feel I have no other options.

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Ask your Dr. If tapering and taking a low dose of Naltrexone (LDN 4.5) might be a good idea for you? That is what my naturalpathic Dr has me doing. I was going down at a rate of 2.5 a week from 20 ml of prednisone. Now I will stay at 10ml for a few weeks bc of some mornings biceps pain.
I keep thinking that I might have the beginning of GCA Dr. dosen't think so bc my headaches are not in the temporal lobe area more like in the sinus areas.

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karinaph | @karinaph | Apr 29, 2023

Thank you for your kind suggestion. I’ll ask her the next time we talk. I’m now, Aprill ‘ 23 at 1.5 mg prednisone!!! It’s been a long three years with this malady.
I’m very aware of the GCA symptoms and don’t want to repeat that. Good luck as you taper too. 2.5 / week is a bit steep as you get to < 10… just my opinion. Take care & again thanks

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redboat | @redboat | Apr 29, 2023
In reply to @krueg "Quick question, were you put on an antibiotic by your doctor until your dosage of prednisone..." + (show)
@krueg

Quick question, were you put on an antibiotic by your doctor until your dosage of prednisone gets below 20mg? I was told this is due to the increased risk of a very serious but rare infection (i can't remember what it was). I was put on Bactrim and it increased my liver lab tests while on ACTEMRA. Went off of it and everything was fine.

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I was not given antibiotics.

My liver tests while on Actemra have increased, but were still in the high-normal range (ALT= 33 U/L) last time they were checked on 8 April. Above ALT = 47 U/L is considered out of normal range by my medical provider (Kaiser). But normal for me is more like ALT = 13 U/L.

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