1. < Polymyalgia Rheumatica (PMR)

Immune system boosters

Posted by christi48 @christi48, Jan 7, 2023

In the past I have always taken Vitamin C, Echinacea and garlic when I had a cold and the combination seemed to lessen the symptoms and duration. Should people with PMR take these supplements, even short-term?

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

kareena | @kareena | Jan 15, 2023
In reply to @suetex "Boy, can we clone your doctor? I've been reading these post for awhile as I am..." + (show)
@suetex

Boy, can we clone your doctor? I've been reading these post for awhile as I am on my own journey and I have decided that half of what we do is wrassle with our docs for appropriate treatment. I myself went for 4 years to a well thought of rheumy (with suspicious sed rate and CPR) with no diagnosis. Had to change docs and the new one took 15 minutes. I am beginning to think something is wrong with the educational system for doctors. They should read our posts.

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Thank you. I am glad that you have been diagnosed

He has been a big gift. He diagnosed me in a couple of months.

I moved out to British Columbia 7 years ago and by sheer luck have had two wonderful doctors. This is probably not the usual here. I remain grateful every day. 🧘‍♀️

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 15, 2023
In reply to @suetex "Boy, can we clone your doctor? I've been reading these post for awhile as I am..." + (show)
@suetex

Boy, can we clone your doctor? I've been reading these post for awhile as I am on my own journey and I have decided that half of what we do is wrassle with our docs for appropriate treatment. I myself went for 4 years to a well thought of rheumy (with suspicious sed rate and CPR) with no diagnosis. Had to change docs and the new one took 15 minutes. I am beginning to think something is wrong with the educational system for doctors. They should read our posts.

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Have you seen the Patient Revolution website 🙂
https://www.patientrevolution.org/school

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hollywood817 | @hollywood817 | Feb 1, 2023
In reply to @mary4 "Amen to that John bishop! I completely changed my tapering schedulenbased on everything I have learned..." + (show)
@mary4

Amen to that John bishop! I completely changed my tapering schedulenbased on everything I have learned on this site and after feel better that I have in two years, and.fornthe first time feel optimistic about the potential of a future without PMR. Someonenshould write a paper gathering the themes of this site. Have you.presented on the content of this site at conferences for physicians and other health care.providers. should be required reading in med schools. You would.be doing a wonderful community service, and greatly contributing to the community of practice. My rant for the day.

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@mary4 keep ranting! looking into medicinal mushroom use as an option for supporting treatment to somatuline depot for my LiverNET. Treatments due to start soon. In active education mode. thank you

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sunflower97 | @sunflower97 | Feb 10, 2023
In reply to @mary4 "You presented on this peer support forum for PMR?" + (show)
@mary4

You presented on this peer support forum for PMR?

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Yes. I have been on steroids for a year and three months. Every time they taper me off the condition comes back full force, and the pain is off the charts. What other medication’s are there out there that work for

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sunflower97 | @sunflower97 | Feb 10, 2023

I am happy to have found a support group on poly myalgia rheumatica. I was diagnosed and hospitalized a year and three months ago I have been on steroids ever cents, and every time they taper me off the symptoms come back what other medication’s do others take that control the condition, and other holistic methods and diet tips are there

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sunflower97 | @sunflower97 | Feb 10, 2023

I’m interested in knowing what medication’s have worked for poly myalgia rheumatica. My doctor wants to try me on methotrexate and I do not like the side effects.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 10, 2023
In reply to @sunflower97 "I’m interested in knowing what medication’s have worked for poly myalgia rheumatica. My doctor wants to..." + (show)
@sunflower97

I’m interested in knowing what medication’s have worked for poly myalgia rheumatica. My doctor wants to try me on methotrexate and I do not like the side effects.

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Welcome @sunflower97, I'm sorry to hear you are struggling with PMR and the treatment. There are a couple of discussions you might find helpful:
--- PMR: Are there treatment alternatives to Prednisone?
https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/
--- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/.

Tapering off of prednisone too quickly can cause the flareups you mentioned. My rheumy had me keep a daily log with pain level and dosage level which helped. He also told me I needed to listen to my body and pay attention to pain levels when tapering. Are you working with a rheumatologist on a plan to taper off of prednisone? Do you keep a daily log?

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