PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

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

@johnbishop

A big yes to continuing with exercise when you have PMR! My second time around I started eating better and exercising a little more which I think helped me taper off sooner than the first time with PMR - 1 and half years vs 3 and half years. Here's some information that might be helpful that also mentions exercise:
— Can Diet Affect Symptoms of Polymyalgia Rheumatica?:
https://www.healthline.com/health/polymyalgia-rheumatica-diet

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A big yes on diet. The reason I had such a bad initial flareup was that I was eating almost exclusively Tomatoes, potatoes, pork chops, sausages, bacon, french bread, wine, sweets. When I eventually found out what I had done and change my eating habits I started to improve. This whole episode had been a life changing experience. I have had to learn to pull up my big girl panties and face up to doing what I really didn't want to do. Eat the foods I would never have done before and live with never eating my favorite foods ever again. And exercising, but based on your post I will get back to doing it again. Thanks.

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I learned I had PMR last June and started with 3 pills of Prednisone. Now I’m down to one until the end of the month when I will take 1/2 pill for two months. My pain is gone by about noon every day. I’m a vegetarian and I get aerobic exercise most days of the week. My doctor said my progress has likely gone well because of my lifestyle.

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@c75

I do have issues with my feet and legs. I do also have back pain. However I must say the lower leg and feet issues are most concerning as it has affected us my mobility. Prednisone has helped my pain , and Tylenol for Arthritis make it so I do the best I can. I do live in Canada 🇨🇦 so am very thankful for the great information from this group. One day at a time we cope.

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Hi there, Have been battling this for two years, am on 3.5. Now reduce by half mg per month.
I have started taking prednisone before bedtime,I wake up periodically in the night but not a real problem.No pain.Am in Alberta.
I wear compression socks and elevate my legs above my heart for a half hour twice a day.Cheers.

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@bradninchgirl

The Magnesium I had not been satisfied with has magnesium oxide 400mg as it's main ingredient. Other ingredients: medium chain triglycerides, gelatin glycerin, rape seed lecithin. I have had no success in shaking the stiff muscle pain over the past year. I felt like my muscles weren't repairing themselves after exercise.

The magnesium I am taking now has magnesium 225mg (with a daily dose of 450mg) magnesium citrate, magnesium glycinate and magnesium malate, zinc, zinc citrate and zinc ascorbate, vitamin D3. Within in one week my muscle pain and stiffness had lessened considerably and my energy and enthusiasm levels improved. I am able to climb stairs in the normal way and can walk upright.

I may be misjudging product 1 and although not listed may contain exactly the same elements as product 2, but after 3 1/2 years I feel so much better after a couple of weeks of taking product 2 and feel like I am ready to start to reduce my prednisone.

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I read that magnesium oxide is very poorly absorbed.

In contrast, magnesium citrate, magnesium glycinate and magnesium malate, are all supposed be well-absorbed.

Seems you are getting the magnesium your body was missing before!

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@ncgal

I personally think that tapering off is an individual problem. Some people take months to go from say 10 mgs. down to 9, while others start at a much higher dose and can taper off faster until they get to a lower dose. Your body lets you know when to hold steady. I started at 10 mgs. and am now down to 2 mgs, but it has taken 16 months with fluctuations along the way. My body is telling me to stay at two for the time being with just the occasional stiffness when getting up from a chair. After my rheumatologist started me on Plaquenil (200mgs twice a day) I was able to taper off every two weeks from 8mgs down to 2 mgs today. So far so good.

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Yay Plaquenil, me too. I dropped to 200 yesterday and thought better of it at 1am, lol. I also had dropped 1 1/4 mg Prednisone, which I added back in today.
This is a full time job!

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I have had pmr for 6 months i started on 40 milligrams of prednisone i am now on 8 milligrams reducing by 1 milligram a month i have been told i will be on this steroid for at least 2yrs I have been suffering some really bad pain I haven't seen a specialist yet my gp said to carry on with steroids no one has told me anything about my diet what to eat or what not to eat example is it ok to weetabix for breakfast nobody has told me anything can anyone tell me please do i change my eating habits I would appreciate it also being on steroids for so long worries especially the side effects if anyone out can give me any advice please feel free to help me I would really appreciate it

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@jonnydonny

I have had pmr for 6 months i started on 40 milligrams of prednisone i am now on 8 milligrams reducing by 1 milligram a month i have been told i will be on this steroid for at least 2yrs I have been suffering some really bad pain I haven't seen a specialist yet my gp said to carry on with steroids no one has told me anything about my diet what to eat or what not to eat example is it ok to weetabix for breakfast nobody has told me anything can anyone tell me please do i change my eating habits I would appreciate it also being on steroids for so long worries especially the side effects if anyone out can give me any advice please feel free to help me I would really appreciate it

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Hello @jonnydonny, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic so meet others who have shared their experience. If you click the link below it will take you to the beginning of the discussion.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

Diet and lifestyle can help you manage the symptoms when tapering down on the prednisone. Here's some information that might be helpful.
--- Polymyalgia Rheumatica Diet: Do's and Don'ts: https://www.healthline.com/health/polymyalgia-rheumatica-diet

I found keeping a daily log of my prednisone dosage for the day and the level of pain or stiffness I had when I woke up in the morning were helpful when tapering to determine when and if to taper down. Do you keep a daily log?

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@johnbishop

Hello @jonnydonny, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic so meet others who have shared their experience. If you click the link below it will take you to the beginning of the discussion.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

Diet and lifestyle can help you manage the symptoms when tapering down on the prednisone. Here's some information that might be helpful.
--- Polymyalgia Rheumatica Diet: Do's and Don'ts: https://www.healthline.com/health/polymyalgia-rheumatica-diet

I found keeping a daily log of my prednisone dosage for the day and the level of pain or stiffness I had when I woke up in the morning were helpful when tapering to determine when and if to taper down. Do you keep a daily log?

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I have a steroid card and record every month my dosage the last 6 months have deen a nightmare for me at 68 I was a fit as anyone you could meet fast forward to today and my body is wrecked to make matters worse I now have arthritis in both hands trying to manage both is a nightmare the pain is brutal at times no one has ever sat me down and advised me what to do the pmr is something I think I was the first patient my doctor had come across I personally think I have to see a specialist he thinks different all I'm asking for is some kind of help it concerns me the length of time I will be on steroids because of the side effects
Simple questions to ask like can i drink a glass of wine with my dinner or can i have couple of pints 1 day a week is it safe to drink or leave it alone completely I have to explore the net to get answers that's how I came across the mayo clinic yesterday at least you can communicate with people who have the same condition as myself for breakfast this morning I'm going to try weetabix as I read it was safe cereal or alpen Musli maybe you or someone else can tell me if I'm doing right cheers for taking the the time to read this

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Hi, glad you found this group. It can be overwhelming, but take a deep breath and look at the info links John has sent. I think you should see a specialist too. Diet wise, put your salt shaker down, watch your intake of sweets and refined carbs, and try to move towards a whole food approach to eating. Alcohol is an inflammatory substance, so you may want to limit your intake to a few drinks a week. That was hard for me, but I felt better.
Hang in there. This group has so much experience and insight into how they cope as things arise. Wish I had found them sooner, was 6 years into it before someone sent me the link.

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Thanks for the reply means a lot cheers

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