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.

suetex | @suetex | Aug 10, 2022
In reply to @dmoonchild "Hello everyone. I’m so happy to have found this place. I have had symptoms of PMR..." + (show)
@dmoonchild

Hello everyone. I’m so happy to have found this place. I have had symptoms of PMR and GCA for months now. Been to 2 rheumatoid drs and no diagnosis. If fact, my long time rheumatoid dr left and the new guy took me off my meds without even seeing me or a phone call 😡
I feel like I’m dying. I told this to my last Dr at my evaluation. My blood results came back showing nothing and I was referred to pain management 😳🙄 ( august 24th)
I don’t know what to do or where to go. The headaches and pressure in my neck…and the back and arm pain are bad.
Will pain management be able to diagnose me? And treat me? I’m so frustrated 😤

Jump to this post

Hi, Moonchild. I hope by now you have a new Rheumy , please don't give up. I'm a little confused by the timing you mention since Aug 24th hasn't happened this year yet. But all that aside, we know that we wish Medicine was a Science but in truth there is a large amount of Art to it. It took me 4 yrs. and 2 Rheumies to get diagnosed. I wouldn't settle for just a pain management doc myself but if you found one that could see the big picture, maybe they could help. I found myself telling everyone remotely involved with medicine my story in hopes for insight. You have our support to be noisy and keep looking for answers. It's your life and your right.

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1 reply
dmoonchild | @dmoonchild | Aug 10, 2022
In reply to @colleenyoung "Hi @dmoonchild, autoimmune diseases, like PMR and GCA, are notorious for being troublesome to diagnose. You..." + (show)
@colleenyoung

Hi @dmoonchild, autoimmune diseases, like PMR and GCA, are notorious for being troublesome to diagnose. You only have to see these related discussions to realize that you are unfortunately not alone in your pursuit of a proper diagnosis and how to get one.

- Is everyone here diagnosed with PMR seeing a rheumatologist? https://connect.mayoclinic.org/discussion/rheumatologist-1/
- Do I really have PMR? https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/
- PMR initial diagnosis: Can there be an underlying disease? https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
- Were you misdiagnosed with PMR? What was your diagnosis?https://connect.mayoclinic.org/discussion/misdiagnosis/

I'm sure @pickle7 @tsc @novabill @marilynredder2367 @milld835 @susan63 @microbe1943 @lmoross and other members can share stories and tips with you too.

Moonchild, did your new doctor explain why she/he took you off your medications or explain that they ruled out PMR and why? Did they tell you what they think is going on and why the referral to pain management?

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Hi Colleen. Thank you very much for all of this information. To answer your questions, no and no.
No one ever brought up PMR , I googled my symptoms because I wasn’t getting help from my Dr.s and I’m getting worse. At this point, I’m self treating with advil 😞
I will read all of the info you sent to me. Thanks so much.

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dmoonchild | @dmoonchild | Aug 10, 2022
In reply to @flymetothemoon "Sorry you are going through this. I was in pain for a year with nothing showing..." + (show)
@flymetothemoon

Sorry you are going through this. I was in pain for a year with nothing showing up in blood tests. And then they did show up. My numbers were so high and my husband, who is an Ophthalmologist, was extremely concerned about my eyes. This has been a roller coaster ride that I can’t seem to get off. Make sure you are In good hands and always good to get a second opinion.

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Thanks so much 👍

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dmoonchild | @dmoonchild | Aug 10, 2022
In reply to @suetex "Hi, Moonchild. I hope by now you have a new Rheumy , please don't give up...." + (show)
@suetex

Hi, Moonchild. I hope by now you have a new Rheumy , please don't give up. I'm a little confused by the timing you mention since Aug 24th hasn't happened this year yet. But all that aside, we know that we wish Medicine was a Science but in truth there is a large amount of Art to it. It took me 4 yrs. and 2 Rheumies to get diagnosed. I wouldn't settle for just a pain management doc myself but if you found one that could see the big picture, maybe they could help. I found myself telling everyone remotely involved with medicine my story in hopes for insight. You have our support to be noisy and keep looking for answers. It's your life and your right.

Jump to this post

Oh, my appointment is upcoming on August 24th

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1 reply
dmoonchild | @dmoonchild | Aug 10, 2022
In reply to @tsc "Hi @moonchild, I suffered with PMR (pain on a scale of 10 out of 10) for..." + (show)
@tsc

Hi @moonchild, I suffered with PMR (pain on a scale of 10 out of 10) for four months, full blown and my inflammation markers, ESR and CRP, were only slightly elevated so I wasn't diagnosed. I then got terrible neck stiffness, scalp tenderness, short little stabbing pains on the side of my head, anorexia and anemia. Nine months after the first blood work my ESR and CRP were off the charts. I had a temporal artery biopsy and was diagnosed with Giant Cell Arteritis and put on 40 mg of prednisone. I'm down to 1 mg now.

Were you ever prescribed prednisone and did it help? Usually the dosage for PMR is 15 -20 mg and the relief is often described as "miraculous." The dosage for GCA is higher. It's serious - untreated it can cause stroke or blindness. Have you had problems with your jaw when eating, unable to chew, or difficulty seeing? Has any doctor ever suggested a temporal artery biopsy?

If symptoms don't respond to prednisone, it could be an infection, malignancy, connective tissue disorder or hypothyroidism. I got this information from a diagnostic algorithm for PMR from Cecil and Goldman's Textbook of Medicine.

I hope you get some relief and find some answers soon.

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Hi, thanks for the reply. I’m getting the jaw pain now and headaches. I don’t suffer headaches normally. ( everything else hurts ) 😂
I’ve been on prednisone for bouts of back issues and it always helped, but that was years ago.

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2 replies
suetex | @suetex | Aug 10, 2022
In reply to @dmoonchild "Oh, my appointment is upcoming on August 24th" + (show)
@dmoonchild

Oh, my appointment is upcoming on August 24th

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Now, I get it! That's good to hear. Give him- or her- an earful.. Let us know how it goes.

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Teri | @tsc | Aug 10, 2022
In reply to @dmoonchild "Hi, thanks for the reply. I’m getting the jaw pain now and headaches. I don’t suffer..." + (show)
@dmoonchild

Hi, thanks for the reply. I’m getting the jaw pain now and headaches. I don’t suffer headaches normally. ( everything else hurts ) 😂
I’ve been on prednisone for bouts of back issues and it always helped, but that was years ago.

Jump to this post

I hope you can impress your doctors with the urgency of this and get them to prescribe prednisone. If you have any trouble with your vision, best to go to an Emergency Room immediately. I hope you get the care and treatment you deserve.

REPLY
dmoonchild | @dmoonchild | Aug 10, 2022
In reply to @dmoonchild "Hello everyone. I’m so happy to have found this place. I have had symptoms of PMR..." + (show)
@dmoonchild

Hello everyone. I’m so happy to have found this place. I have had symptoms of PMR and GCA for months now. Been to 2 rheumatoid drs and no diagnosis. If fact, my long time rheumatoid dr left and the new guy took me off my meds without even seeing me or a phone call 😡
I feel like I’m dying. I told this to my last Dr at my evaluation. My blood results came back showing nothing and I was referred to pain management 😳🙄 ( august 24th)
I don’t know what to do or where to go. The headaches and pressure in my neck…and the back and arm pain are bad.
Will pain management be able to diagnose me? And treat me? I’m so frustrated 😤

Jump to this post

thanks Teri👍

REPLY
pmm2001 | @pmm2001 | Dec 5, 2022

Anybody dealing with Pred tapering w/ both PMR & GCA? Am tapering down while also on Actmera (since July). Have had two GCA flares which required re-upping pred for a while. Still have scalp sensitivity and some jaw pain which seems to be increasing while tapering. (No PMR flares.) Am currently at 15mg, down from a max of 40 in May.
These symptoms are also associated with Pred withdrawal and/or Actemra…so hard to know. Docs tend to be dismissive about “head pains” anyhow—but if you guess wrong there is a high risk of optic nerve damage! Finding the right balance is the challenge, as no one wants to re-up Pred

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 5, 2022
In reply to @pmm2001 "Anybody dealing with Pred tapering w/ both PMR & GCA? Am tapering down while also on..." + (show)
@pmm2001

Anybody dealing with Pred tapering w/ both PMR & GCA? Am tapering down while also on Actmera (since July). Have had two GCA flares which required re-upping pred for a while. Still have scalp sensitivity and some jaw pain which seems to be increasing while tapering. (No PMR flares.) Am currently at 15mg, down from a max of 40 in May.
These symptoms are also associated with Pred withdrawal and/or Actemra…so hard to know. Docs tend to be dismissive about “head pains” anyhow—but if you guess wrong there is a high risk of optic nerve damage! Finding the right balance is the challenge, as no one wants to re-up Pred

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Hello @pmm2001, Welcome to Connect. You will notice that we moved your post into an existing discussion on the same topic here:
-- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica):
https://connect.mayoclinic.org/discussion/temporal-arteritis-1/

You mentioned the scalp sensitivity and jaw pain seem to be increasing while tapering.
@tsc and others with GCA experience may have experience to share with you.

Both my primary care and rheumatologist were always asking me if I had scalp tenderness or pain in the temple area along with other symptoms due to the risk of GCA and the importance of addressing the symptoms. Has your doctor been dismissive about your scalp and jaw pain symptoms? If so, I would press to see a specialist or rheumatologist.

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