PMR & GCA symptoms: I need a diagnosis 😞

Posted by dmoonchild @dmoonchild, Aug 9 10:46am

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 😤

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

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?

REPLY

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.

REPLY

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.

REPLY

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

Thanks so much 👍

REPLY
@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

REPLY
@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.

Jump to this post

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.

REPLY
@dmoonchild

Oh, my appointment is upcoming on August 24th

Jump to this post

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

REPLY
@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
Please sign in or register to post a reply.
  Request Appointment