1. < Polymyalgia Rheumatica (PMR)

GCA Relapse - A Slow Burn

Posted by Teri @tsc, May 1 2:42pm

I thought I was doing so well, off Prednisone almost two years, after having PMR and GCA for about two and a half years (one year without diagnosis and treatment, my own fault).
I started having neck and head pain in Nov. 2023, a year after stopping Prednisone: also, some pains on the side of my face, near my ears, and a somewhat sore scalp. I thought the pains were muscular. I did a lot of neck stretches, infrared heat, ultrasound, TENS Unit, myofascial release, still thinking it was muscular. These therapies had minimal impact. Massage didn't help.
Last month I lost weight, no appetite, had itching on my torso without a rash, felt faint in the morning a couple of times, and had a dry cough. I requested a CRP test. It came back elevated.
The Rheumatologist prescribed a quick pack Prednisone. I felt better. On the lower dosage, head/neck pain returned. My CRP nearly tripled in two weeks.
So, I'm back in the saddle again, taking Prednisone 40 mg for the next two weeks, then starting a taper of 5 mg.
I expected a flareup to hit me like a sledgehammer, the way PMR did, and not be a slow smoldering burn.
The lesson in all this - if you've had GCA, (or PMR) pay attention to head and neck pain that doesn't respond to conventional therapies.
The pains started around the time I was trying to get our HMO to authorize locally performed cataract surgery for my husband who has Alzheimer's Disease. The request was denied so I pursued his surgery privately. (I posted about this in Caregivers- Dementia Group). I've read that stress can aggravate GCA/PMR - maybe there's something to that.
I wish you all good health and relief from pain!

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

Mentor
John, Volunteer Mentor | @johnbishop | May 1 2:54pm

Teri @tsc, I am so sorry to hear that the GCA/PMR reared it's ugly head again and hoping that you are able to get some relief along with less stress in your life. I know it can be stressful dealing with insurance companies and coverage denials and stress can aggravate pretty much any condition (IMHO). Hoping you are able to get back to normal soon.

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1 reply
Teri | @tsc | May 1 3:08pm
In reply to @johnbishop "Teri @tsc, I am so sorry to hear that the GCA/PMR reared it's ugly head again..." + (show)
@johnbishop

Teri @tsc, I am so sorry to hear that the GCA/PMR reared it's ugly head again and hoping that you are able to get some relief along with less stress in your life. I know it can be stressful dealing with insurance companies and coverage denials and stress can aggravate pretty much any condition (IMHO). Hoping you are able to get back to normal soon.

Jump to this post

Thanks, @johnbishop, for your concern and support. I hope this post helps others, who tend to minimize their symptoms or discount them. Doing that with GCA, and other disorders, can have dire consequences.

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krueg | @krueg | May 1 4:43pm

So sorry to hear you've had a relapse. I hope you do well on your taper and can get off Prednisone as soon as possible. This is a terrible disease for sure

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valerie6062 | @valerie6062 | May 1 7:52pm

Sounds a lot like my situation. I've had LCA for 21 months[that's since diagnosis]. I suggested to my rheumatologist that it may have been triggered by stress . I had previously had PMR back in 2015. He said "no" . For me the coincidence was too great. Our dog had just died at only 9 years , we had packed up our home and moved from city to country location , leaving behind friends and family and we were 79 and 89 at the time. It was a very stressful time. So I have been on a roller coaster with prednisone and related side effects which have been quite devastating eg diabetes 2 , foot neuropathy , lumbar stenosis.At the moment I am on 7mg and having an Actemra injection once per week , going down with prednisone half a mg every 10 days until I reach 5 mg. My blood results are in normal range but my doctors are not happy because my eyesight is still compromised . So tomorrow I am having an expensive Petscan of brain, aortic arch and associated blood vessels. It is quite a journey as you are experiencing also. So my sympathy for all that you are going through and I hope there is improvement soon for both of us..

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1 reply
Teri | @tsc | May 2 1:22pm
In reply to @valerie6062 "Sounds a lot like my situation. I've had LCA for 21 months[that's since diagnosis]. I suggested..." + (show)
@valerie6062

Sounds a lot like my situation. I've had LCA for 21 months[that's since diagnosis]. I suggested to my rheumatologist that it may have been triggered by stress . I had previously had PMR back in 2015. He said "no" . For me the coincidence was too great. Our dog had just died at only 9 years , we had packed up our home and moved from city to country location , leaving behind friends and family and we were 79 and 89 at the time. It was a very stressful time. So I have been on a roller coaster with prednisone and related side effects which have been quite devastating eg diabetes 2 , foot neuropathy , lumbar stenosis.At the moment I am on 7mg and having an Actemra injection once per week , going down with prednisone half a mg every 10 days until I reach 5 mg. My blood results are in normal range but my doctors are not happy because my eyesight is still compromised . So tomorrow I am having an expensive Petscan of brain, aortic arch and associated blood vessels. It is quite a journey as you are experiencing also. So my sympathy for all that you are going through and I hope there is improvement soon for both of us..

Jump to this post

Hi @valerie6062, Thank you for sharing your experiences. I hope you get some answers from your Petscan and that your vision is restored. I had two incidences of visual disruption before I was diagnosed with GCA, but it went away and didn't leave any damage.

We also lost a dog on Valentine's Day. She was a neighborhood stray I was feeding for seven years. My husband, who has Alzheimer 's loved to go with me and pet her. She was picked up by Animal Control because a new neighbor complained. Everyone else was used to her and she had neighborhood guardians. She was a back of the pack, sensitive dog, but unfortunately, too difficult for me to take on because she lived free for so long and was still a little aloof. How I miss her! Since Lucy's gone, my husband's lost motivation. It's hard to get him out for a walk. I may start going to adoption events to look for a small dog with a suitable temperment for us. I think it would perk him up. Then I wonder if I'm getting ahead of myself and if it would be wise to take a dog on at this point.

I hope that things work out for you.

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