1. < Polymyalgia Rheumatica (PMR)

Weight loss with GCA and Polymyalgia

Posted by khmc @khmc, Apr 6, 2023

I have had GCA and polymyalgia for 2 years. Actemra injections every 14 day. Continual weight loss unable to gain. All blood tests are good .
Eat well plus protein drinks, I am active but not doing any unusual strenuous activities. Has any one else had this experience.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 6, 2023

Hi @khmc, I had the opposite problem with my PMR but from what I've read you are not alone with the GCA and the unintended weight loss symptom. While we wait for others who might have experience to share, here is an older article I found on the topic.

"Systemic features, including low-grade fever, anorexia and fatigue, are present in approximately half of patients.5, 12 Giant cell arteritis may also be associated with weight loss and night sweats, however, these symptoms may also suggest other possible diagnoses, such as a malignancy.10 In rare instances, systemic symptoms will be the only clinical indication of giant cell arteritis, therefore, the diagnosis of giant cell arteritis should be considered in any patient with systemic symptoms, raised inflammatory markers and no evidence of another cause, such as infection."
--- Giant cell arteritis: Always keep it in your head: https://bpac.org.nz/bpj/2013/june/arteritis.aspx

Have you discussed the unintended weight loss with your rheumatologist to see if they have any suggestions or additional tests they can run?

REPLY
loujo88 | @loujo88 | Jul 14 10:56pm

I have lost about fifty pounds, going from 210 to 160 in less than a year. I was diagnosed with PMR about eight years, but the weight loss started only a year or so ago. I have not yet been tested for GCA, but I will ask my PCP about going to Mayo, as none of my doctors has been much help toward a diagnosis. Any thoughts, anyone? Thank you.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 15 7:30am
In reply to @loujo88 "I have lost about fifty pounds, going from 210 to 160 in less than a year...." + (show)
@loujo88

I have lost about fifty pounds, going from 210 to 160 in less than a year. I was diagnosed with PMR about eight years, but the weight loss started only a year or so ago. I have not yet been tested for GCA, but I will ask my PCP about going to Mayo, as none of my doctors has been much help toward a diagnosis. Any thoughts, anyone? Thank you.

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Welcome @loujo88, I don't believe @khmc has posted an update on the cause of their weight loss yet. I'm hoping they can share an update here. 8 years is a long time for PMR. There can be a lot of different reasons for the weight loss you are experiencing. I'm sorry to hear your doctors have not been able to help with a diagnosis.

I did find some information on an unexplained weight loss that might be helpful if you haven't already seen it.
-- Unexplained Weight Loss: Causes and risk factors
https://www.healthline.com/health/unexplained-weight-loss
If you would like to seek help from Mayo Clinic, you can contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Did your doctors run any tests to try and find out why you are losing weight?

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