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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.
Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?
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Please be careful with Hydroxychloroquine. It has a 30 day or more half life (the range of days is based on how well you metabolize the drug) which means if you take one pill today it takes 30+ days for half of it to be out of your system. To get it down to where it is considered completely out of your system it normally takes 5 half lives - 150+ days. My first Rheumatologist wanted me on Hydroxychloroquine and I declined because of the half life facts and the known side effects. Prednisone has a 3-4 hour half life for comparison.
You can read up on any drug at Drugs.com - it has a lot of god information for patients on drugs.
@ripley Have you talked with your PCP or Rheumy about taking steroids to help diagnose PMR for people without classic symptoms? I do not have classic symptoms and more than one doctor suggested I try steroids as a test to see how well I responded. Apparently if you do not respond as expected then it is not PMR. I did respond as expected so my Dx was confirmed.
I wish you well on your journey and keep us posted as you go.
Thank you. I discovered that it takes 3 months for Hydroxychloroquine to get out of my system. When I decided I wasn’t going to take it anymore my doctor asked me to consider taking methotrexate instead. She indicated that I couldn’t start it for three months after Hydroxychloroquine was out of my system. After researching Methotrexate I decided against that option. There are way to many unpleasant side effects.
I would say it takes three months for your doctor to feel it is safe to start you on a different med. It still takes about 5 half lives, and 90 days means only 18 days per half life. That's way under the 30 day minimum if you have optimal metabolism.
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1 ReactionI was on hydroxy chloroquine after two other drugs failed as well. It seems the only thing that works for me is 8 mlg of medrol "methylprednisolone" or 10 mlg Prednisone, personally the medrol works the best. Wheni start to decrease my pain starts to increase within a day or two. I have been on this roller coaster for 15 months. I have scoured every health food and supplement stores and online with no real results. The only thing that works on me is the steroids.
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4 ReactionsThank you for your reply. I wish I could stay on steroids forever because they do the trick. I am in a lot of pain and would like to find something natural but I don’t know what that would be.
Good luck to you. I am grateful to have found this group as no one else understands.
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1 ReactionI have been diagnosed since February 2021 following 4 years of symptoms. I have been unable to go below 10mg of prednisone. We have tried methotrexate and leflunomide without success. I am starting actemra today and I wonder if others have has success with actemra. Thanks
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1 Reaction@missy3134 Have you looked into an anti-inflammatory diet. That did not eliminate my symptoms but I did feel much better once I got on it. I first spent a month eliminating refined floor and then I spent a month eliminating refined sugar I did not try to do them at the same time. I do cheat but it has become less frequent. The months where I was learning to live without I did not cheat, I wanted my body to no longer be so dependent. I went to organic foods about 15 years ago when I became a breast cancer survivor, so I did not have to eliminate fast foods or processed - they were already not a portion of my diet.
It helped with my symptoms but did not replace the need for drugs, just fewer. We are what we eat or supplements/drugs we take.
I wish you well as you learn to peacefully cohabitate with PMR. It certainly is not anything any of us would want for a loved one.
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1 Reaction@ksidorov I have non-classical PMR symptoms and so the doctors were late putting the Dx on the table. I spent time looking at the pain in detail. What I learned is that PMR often comes with bilateral trochanter bursitis (this is thigh pain - that can hurt when external pressure is applied over the trochanter bursae). I have had several rounds of hip steroid injections which quiet the local pain for a few months. I even had a guided injection of steroids directly into the bursa sacs. Note that this is not a systemic treatment but a localized treatment of the PRM pain, so please keep that in mind.
Hi, thank you for your reply. We eat a plant based diet, rarely eat sugar (holidays only), don’t eat fast food at all. I do cheat once in a while with French fries or some other treat that’s on the no no list. I also drink alcohol (mostly wine) which I also monitor because that also causes inflammation. I pay attention to my pain level the day after. Sometimes it makes a difference and sometimes it does not. It has been a big adjustment going down to 5 mg Prednisone.