Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

@peggyp, It looks like you joined Connect on Feb 20th and I believe it normally takes a week or so before a new member can post a link to a website/article. This is to protect members from spammers and advertisers. You should be able to share the link in a few days. If you want to send me a private message with the link to the article by clicking on my member name @johnbishop and then clicking on the Send private message link under my profile description, I will post the link for you.

Yes. I tried acupuncture and with two hour long sessions a week apart found no benefit at all in fact the reverse after the second session. I had more pain and mobility issues. This was before diagnosis and starting prednisolone.

I’m not sure if PMR is autoimmune (I think it is). A really good acupuncturist I have seen says that acupuncture doesn’t work for autoimmune diseases because it actually improves immunity, thus making an autoimmune disease worse. I have used acupuncture for tendenitis and a problem with a very painful thumb with good results.

@peggyp, I noticed that you wished to post URLs to a web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam, so allow me to post them for you.

- No Special Risks Seen with Long-Term Steroids in Polymyalgia Rheumatica (2017) https://www.medpagetoday.org/rheumatology/generalrheumatology/66912
- Polymyalgia Rheumatica and Steroid Side Effects: New Findings (2017) https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

Thank you. I believe the members on this forum will benefit from the information, and especially since The Mayo Clinic was involved.

@legendts - Thank you for the private message. I thought I would answer it here in one of the discussions you are following because you asked a great question that I think other members would also be interested in knowing. You currently have the ability to change how the posts in a discussion are displayed. The default is Oldest to Newest but you can change the order to Newest to Oldest by going to the top of the discussion and selecting your preference at the bottom right of the discussion description. Unfortunately this is something you have to do each time you go into a discussion.

We are continually looking for ways to improve the user interface on Connect to make it easier for members so hopefully this may be on the list for a future update. There is a Get Started on Connect guide that you and other members might find helpful. There is a link to the guide on every Connect page in the left column of the footer -- https://connect.mayoclinic.org/get-started-on-connect/

thanks for the input on acupuncture

Thanks John and thought you may post it publicly. It certainly would be helpful to be able to set your own default but we can live with it 😉😁. If that was the only problem we all had we would be doing well. Thank you also for the link.

I certainly gained knowledge from both links so thank you for bringing it here and to @colleenyoung for posting it early for you Peggy.

Has anyone with PMR and on a Prednisolone dose of around 10mg had a Gastroscopy and/or Colonoscopy. I’m having trouble getting an answer to this question and wondered if anyone here has been that route.