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.

I’m Ethan, and I’m the moderator of this group. You’ll most likely be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

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?

Question about my first major flare up. First my background: My name is Richard and I am a 60 year old fit male who was diagnosed July 2019 and had immediate results with Prednisone. My symptoms had included pain and stiffness in hips, buttocks, alternating shoulders and eventually hands. I could barely put on my socks and sleep was so effected and pain so intense, I showed up at emergency one morning where an intern did the proper blood tests.

My prednisone went from 20mg per day down to 9 mg by January with a plan to reduce by 1mg per month. I am now at 6mg however I started having stiff and sore hands in February/March. Hands would swell up and become quite stiff especially overnight and then loosen up some during the day. This would alternate between hands with 2/3 days and then switch over to the other hand. On my right, my wrist is also affected.

Approximately 10 days ago, My hands started to be affected more aggressively with a severe crippling and stiffness and pain of my left and alternating to my right with similar pain.

Two nights ago I added 5 mg to my regular 6mg and same last night. It had alleviated the worst of the pain and say 50-70 of the stiffness.
I would like to return to my daily 6mg.

I had contemplated just going back to 7mg per day however the pain and crippling was bad enough to warrant something more immediate.

Did I do it correctly? Would you recommend I go back to my 6mg ASAP.

I really would like to reduce my intake of prednisone.

REPLY
@relauzon

Question about my first major flare up. First my background: My name is Richard and I am a 60 year old fit male who was diagnosed July 2019 and had immediate results with Prednisone. My symptoms had included pain and stiffness in hips, buttocks, alternating shoulders and eventually hands. I could barely put on my socks and sleep was so effected and pain so intense, I showed up at emergency one morning where an intern did the proper blood tests.

My prednisone went from 20mg per day down to 9 mg by January with a plan to reduce by 1mg per month. I am now at 6mg however I started having stiff and sore hands in February/March. Hands would swell up and become quite stiff especially overnight and then loosen up some during the day. This would alternate between hands with 2/3 days and then switch over to the other hand. On my right, my wrist is also affected.

Approximately 10 days ago, My hands started to be affected more aggressively with a severe crippling and stiffness and pain of my left and alternating to my right with similar pain.

Two nights ago I added 5 mg to my regular 6mg and same last night. It had alleviated the worst of the pain and say 50-70 of the stiffness.
I would like to return to my daily 6mg.

I had contemplated just going back to 7mg per day however the pain and crippling was bad enough to warrant something more immediate.

Did I do it correctly? Would you recommend I go back to my 6mg ASAP.

I really would like to reduce my intake of prednisone.

Jump to this post

Hi @relauzon, Welcome to Mayo Clinic Connect. I'm not sure there is any "correct" way to taper off of prednisone since each of us are a little different. I had similar issues as you are having with my first occurrence of PMR. I worked with my rheumatologist who gave me several suggestions and when the pain came back I did what you did I went back to the previous dosage. I always tried to live with a little pain/discomfort unless it was too much for me. One of the things that helped me was reducing or increasing the dosage by 1/2 mg if the pain came back and it was really bothering me. I got the doctor to give me prescriptions for 2.5 mg and 1 mg tablets so it was easy to slightly increase or decrease the dosage when needed during the tapering process. I started at 20 mg dosage for both occurrences of PMR. The first occurrence took about 3 years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I was able to taper off of prednisone. The second occurrence I was able to taper off in about a year and half using the same tapering schedule.

Have you discussed your recent flare up and thoughts with your rheumatogist?

REPLY
@relauzon

Question about my first major flare up. First my background: My name is Richard and I am a 60 year old fit male who was diagnosed July 2019 and had immediate results with Prednisone. My symptoms had included pain and stiffness in hips, buttocks, alternating shoulders and eventually hands. I could barely put on my socks and sleep was so effected and pain so intense, I showed up at emergency one morning where an intern did the proper blood tests.

My prednisone went from 20mg per day down to 9 mg by January with a plan to reduce by 1mg per month. I am now at 6mg however I started having stiff and sore hands in February/March. Hands would swell up and become quite stiff especially overnight and then loosen up some during the day. This would alternate between hands with 2/3 days and then switch over to the other hand. On my right, my wrist is also affected.

Approximately 10 days ago, My hands started to be affected more aggressively with a severe crippling and stiffness and pain of my left and alternating to my right with similar pain.

Two nights ago I added 5 mg to my regular 6mg and same last night. It had alleviated the worst of the pain and say 50-70 of the stiffness.
I would like to return to my daily 6mg.

I had contemplated just going back to 7mg per day however the pain and crippling was bad enough to warrant something more immediate.

Did I do it correctly? Would you recommend I go back to my 6mg ASAP.

I really would like to reduce my intake of prednisone.

Jump to this post

Hi Richard my name is Roland & what you went through & now going through it was the same with me. I will be turning 79 in a few weeks & my PMR came on 4 years ago in my shoulders, hips & neck started with 20 mg of pred. & tapered off. Now here it is 4 years later & I am on 1 mg/day due to my wrist & fingers hurting especially in the AM. I also was & still am in good shape working out, snow skiing riding my bike & gym work. Yes a strange beast but seeing there is at the moment no cure the only thing we can do is rely on prednisone & most important working out it helps not only staying in shape but it is much easier to deal with the pain.

REPLY
@relauzon

Question about my first major flare up. First my background: My name is Richard and I am a 60 year old fit male who was diagnosed July 2019 and had immediate results with Prednisone. My symptoms had included pain and stiffness in hips, buttocks, alternating shoulders and eventually hands. I could barely put on my socks and sleep was so effected and pain so intense, I showed up at emergency one morning where an intern did the proper blood tests.

My prednisone went from 20mg per day down to 9 mg by January with a plan to reduce by 1mg per month. I am now at 6mg however I started having stiff and sore hands in February/March. Hands would swell up and become quite stiff especially overnight and then loosen up some during the day. This would alternate between hands with 2/3 days and then switch over to the other hand. On my right, my wrist is also affected.

Approximately 10 days ago, My hands started to be affected more aggressively with a severe crippling and stiffness and pain of my left and alternating to my right with similar pain.

Two nights ago I added 5 mg to my regular 6mg and same last night. It had alleviated the worst of the pain and say 50-70 of the stiffness.
I would like to return to my daily 6mg.

I had contemplated just going back to 7mg per day however the pain and crippling was bad enough to warrant something more immediate.

Did I do it correctly? Would you recommend I go back to my 6mg ASAP.

I really would like to reduce my intake of prednisone.

Jump to this post

Relauzon, my situation is similar to yours: I’ve reduced Prednisone from 40 mg to 3 over 15 months. The hand issue popped up at 3, and my rheumatologist has kept me there for 3 months, with the hand pain/numbness gradually fading. The key is the amount of Prednisone. A PMR support group in the U.K./Australia with many more subscribers details many stories of Prednisone reduction, and the general rule is to take just enough to control your pain. Lots of people try to reduce too quickly, causing flares and requiring moving back to a higher dosage and setting back the weaning process. There are published weaning schedules, but EVERYONE IS DIFFERENT. Remember that cutting from 2 mg to one is a 50% cut, while cutting from 20 to 19 is 5% even though both are 1mg changes. Thus, most people have to slow the weaning process the lower they go. Prednisone usually is better than PMR pain, so medicate accordingly. There are reports of patients on the U.K. site who have had PMR for 15 years and still take prednisolone. Others go fairly quickly to zero or very low doses. We are all different but adjusting dosages is key. I also have found that “motion is lotion” and even with morning pain, it dissipates if you exercise in moderation. With intense pain, only Prednisone helps. Good luck. You’re not alone.

REPLY

I have a question about PMR and peripheral neuropathy. I was only diagnosed with PMR 2-1/2 weeks ago and was put on 10 mg. Prednisone. It has worked well and I only have an occasional twinge in my arms and shoulders. I got peripheral neuropathy during my chemo treatments a year ago which affects my legs, feet and hands. I now find that I get dizzy quite often and my energy level is very low. I am not sure if this is due to the Prednisone or the neuropathy or something else entirely. I do have a virtual appointment with my rheumatologist next week and will ask him, but I was wondering if anyone else with these symptoms has any suggestions as to the cause.

REPLY
@ncgal

I have a question about PMR and peripheral neuropathy. I was only diagnosed with PMR 2-1/2 weeks ago and was put on 10 mg. Prednisone. It has worked well and I only have an occasional twinge in my arms and shoulders. I got peripheral neuropathy during my chemo treatments a year ago which affects my legs, feet and hands. I now find that I get dizzy quite often and my energy level is very low. I am not sure if this is due to the Prednisone or the neuropathy or something else entirely. I do have a virtual appointment with my rheumatologist next week and will ask him, but I was wondering if anyone else with these symptoms has any suggestions as to the cause.

Jump to this post

@ncgal, the dizziness and fatigue or low energy level can be a side effect of the prednisone for some people. The information on Mayo Clinic's website for the drug says if you have more than one of these symptoms you should discuss it with your doctor / rheumatologist.
https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269?p=1
I have not had those symptoms while I was taking prednisone so it's good that you have an upcoming virtual appointment with your rheumatologist.

REPLY

Hi there. I've been following this group for several weeks. Each person sharing has been helpful to me as I try to wean off of prednisone. I was diagnosed in August 2019 after six weeks of paralyzing pain. My blood tests did not indicate PMR which my rheumatologist says is not uncommon. I was prescribed 15 mg. prednisone and experienced immediate complete reduction of pain. I felt great (except for the weight gain) until I got to 10 mg. At that point, each time I dropped a mg. I experienced pain that I had to work through. When I got to 7 mg. I hit a wall (pain), and now I'm trying to acclamate to 7 one day and 8 the next. I have some pain and fatigue, but it's doable so far. I appreciate this group. Thank you all.

REPLY
@kmeikle1

Hi there. I've been following this group for several weeks. Each person sharing has been helpful to me as I try to wean off of prednisone. I was diagnosed in August 2019 after six weeks of paralyzing pain. My blood tests did not indicate PMR which my rheumatologist says is not uncommon. I was prescribed 15 mg. prednisone and experienced immediate complete reduction of pain. I felt great (except for the weight gain) until I got to 10 mg. At that point, each time I dropped a mg. I experienced pain that I had to work through. When I got to 7 mg. I hit a wall (pain), and now I'm trying to acclamate to 7 one day and 8 the next. I have some pain and fatigue, but it's doable so far. I appreciate this group. Thank you all.

Jump to this post

Hi @kmeikle1, Welcome to Mayo Clinic Connect and the big hurt club. There is most definitely like you say a lot of members here sharing their experience which helps each of us get through this nasty condition. I can relate to hitting a wall when tapering off of prednisone as I'm sure most of us here on Connect have experienced. I also had a terrible problem with weight gain on my first occurence of PMR which lasted about 3 years. The second time when my PMR came back about 6 years later I was aware of the weight gain problem and was able to keep it within a few pounds by controlling my diet and staying as active as I could without adding any pain.

Here's a good article on Medical News Today on What to eat if you have polymyalgia rheumatica:
https://www.medicalnewstoday.com/articles/321683
Have you tried making any changes in your diet or lifestyle with exercise to help with your PMR?

REPLY

Thanks for your reply John. I had been on an anti-inflammatory diet for a year and was doing well. I have to admit that I've reverted to my old ways (partially because of the prednisone…or that's my excuse and now with the quarantine cooking and eating are my go-to activities). I'm headed back off sugar today because I know from experience that diet affects all manner of diseases and especially PMR. No whites…that's the secret for me. I'll let you know how I fare.

REPLY
@kmeikle1

Thanks for your reply John. I had been on an anti-inflammatory diet for a year and was doing well. I have to admit that I've reverted to my old ways (partially because of the prednisone…or that's my excuse and now with the quarantine cooking and eating are my go-to activities). I'm headed back off sugar today because I know from experience that diet affects all manner of diseases and especially PMR. No whites…that's the secret for me. I'll let you know how I fare.

Jump to this post

@kmeikle1, I forgot to mention what helped me when I hit a wall was just going up or down by 1/2 mg prednisone by using a pill splitter to split the 1 mg tablets.

REPLY
@johnbishop

@kmeikle1, I forgot to mention what helped me when I hit a wall was just going up or down by 1/2 mg prednisone by using a pill splitter to split the 1 mg tablets.

Jump to this post

I'll give that a try starting today. I'll go to 7.5 for a bit before trying 7 again. Thanks. I want to continue to make progress.

REPLY

Hello @123suew, I would like to welcome you to Connect and thank you for sending me a private message. I thought I would answer your message in this discussion – "Polymyalgia Rheumatica (PMR): Meet others & Share Your Story" so that you can meet other members who also have PMR and you can learn some of the tips that have been shared. If you click the VIEW & REPLY button at the bottom of the email notification for this post, it will take you to this post in the discussion.

You mentioned you have been diagnosed with PMR and have been on prednisone 20 mg for 4 days. You also mentioned that since starting the prednisone you have little pain but you still have fatigue and you can't walk far with out being out of breath and weak. You are wondering if this is normal. In my 2 occurrences of PMR I started at 20 mg of prednisone and it did relieve my pain but I still had some fatigue. I had to force myself to keep moving to help with the stiffness. I think it was worse for me during my first time with PMR because I was a lot heavier then and I think that added to the fatigue.

Fatigue or low energy level can be a side effect of the prednisone for some people. The information on Mayo Clinic's website for the drug says if you have more than one of these symptoms you should discuss it with your doctor / rheumatologist.
https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269?p=1

Have you shared your fatigue and shortness of breath symptoms with your doctor or rheumatologist?

REPLY
@johnbishop

Hello @123suew, I would like to welcome you to Connect and thank you for sending me a private message. I thought I would answer your message in this discussion – "Polymyalgia Rheumatica (PMR): Meet others & Share Your Story" so that you can meet other members who also have PMR and you can learn some of the tips that have been shared. If you click the VIEW & REPLY button at the bottom of the email notification for this post, it will take you to this post in the discussion.

You mentioned you have been diagnosed with PMR and have been on prednisone 20 mg for 4 days. You also mentioned that since starting the prednisone you have little pain but you still have fatigue and you can't walk far with out being out of breath and weak. You are wondering if this is normal. In my 2 occurrences of PMR I started at 20 mg of prednisone and it did relieve my pain but I still had some fatigue. I had to force myself to keep moving to help with the stiffness. I think it was worse for me during my first time with PMR because I was a lot heavier then and I think that added to the fatigue.

Fatigue or low energy level can be a side effect of the prednisone for some people. The information on Mayo Clinic's website for the drug says if you have more than one of these symptoms you should discuss it with your doctor / rheumatologist.
https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269?p=1

Have you shared your fatigue and shortness of breath symptoms with your doctor or rheumatologist?

Jump to this post

Yes , wants to keep taking till Thursday and he Wii check back. Thanks for your reply!

REPLY
Please login or register to post a reply.