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.

@flymetothemoon

I am beginning my 1/2 mg the end of this week. I do have shoulder, upper arm pain and my one hand. I take tylenol some nights, and it helps a little. I'm determined, as long as my blood tests stay normal to not go back on this Prednisone. Pain is not great but neither is my bone density and blood sugars on this. I may have no choice at some point but for now, I'm going to stay where I am. Exercise helps, and I'll continue with my walking. I see the Rheumatologist in 3 more weeks so I will see what the blood tests show. I do think it's odd that more people are getting this. My husband sees it in his patients. Strange.

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Possible relationship to Covid vaccines. Mine came on 10 days after 2nd shot. I’m older w a lot of risk factors. I did first booster. Definite increase of severity of symptoms. Now on 3 mg from 10 mg after a year. Not comfortable but way too many side effects. Now bp very low!

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@microbe1943

Possible relationship to Covid vaccines. Mine came on 10 days after 2nd shot. I’m older w a lot of risk factors. I did first booster. Definite increase of severity of symptoms. Now on 3 mg from 10 mg after a year. Not comfortable but way too many side effects. Now bp very low!

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Who knows. Had the 3rd vaccine and didn’t get the 4th. Too many other Tia factor for me staying on Prednisone but I will have to wait it out and see.

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I have been very recently diagnosed with PMR. The doctor put me on a regimen of 30mg per day. This worked great for the first 3 to 4 days. However, as of late, waking up in the morning with neck, shoulder, knee, wrist and hand pain. Take the prednisone at 0700 every day, takes 4 to 5 hours for relief.
I'm 5'9" and weigh 217, 59 years old.
Is anyone out there using a higher dose with better results? Does anyone have any suggestions?
Thank you.

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@naezzo

I have been very recently diagnosed with PMR. The doctor put me on a regimen of 30mg per day. This worked great for the first 3 to 4 days. However, as of late, waking up in the morning with neck, shoulder, knee, wrist and hand pain. Take the prednisone at 0700 every day, takes 4 to 5 hours for relief.
I'm 5'9" and weigh 217, 59 years old.
Is anyone out there using a higher dose with better results? Does anyone have any suggestions?
Thank you.

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Hi Naezzo, this is a very new diagnosis for you. I'm glad you found the PMR group so early in your journey. The members here have a lot of experience and are very generous with their knowledge, including sharing their experiences with prednisone, what dosages work, when and how to taper or increases in dosages helped or were advised.

You'll notice that I moved your post about your current dosage and lack of relief from symptoms to this existing discussion:
- PMR, Prednisone Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I did this so you can read previous posts and connect easily with members like @tsc @ncgal @maryft @sandiw77 @kmeikle1 @juneh @aspine and many others who understand.

You may also be interested in this related discussion:
- What is the goal when first diagnosed with PMR?: https://connect.mayoclinic.org/discussion/what-is-the-goal-when-first-diagnosed-with-pmr/

Naezzo, while you only recently diagnosed with PMR, have you been living with the symptoms for a while? Are you in the care of a rheumatologist?

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@colleenyoung

Hi Naezzo, this is a very new diagnosis for you. I'm glad you found the PMR group so early in your journey. The members here have a lot of experience and are very generous with their knowledge, including sharing their experiences with prednisone, what dosages work, when and how to taper or increases in dosages helped or were advised.

You'll notice that I moved your post about your current dosage and lack of relief from symptoms to this existing discussion:
- PMR, Prednisone Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I did this so you can read previous posts and connect easily with members like @tsc @ncgal @maryft @sandiw77 @kmeikle1 @juneh @aspine and many others who understand.

You may also be interested in this related discussion:
- What is the goal when first diagnosed with PMR?: https://connect.mayoclinic.org/discussion/what-is-the-goal-when-first-diagnosed-with-pmr/

Naezzo, while you only recently diagnosed with PMR, have you been living with the symptoms for a while? Are you in the care of a rheumatologist?

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Colleen Young, thank you for your post.
I have only been dealing with PMR for the past month. Did not know what it was until the diagnosis on August 17th. The Rheumatologist recognized it immediately. He has put me on the 30mg per day. This started on the 17th. Worked quite well the first 3 days, but this Friday, Saturday and Sunday, I have woken up with pain in the neck, shoulders, wrists, hands and hips. After taking my meds at 0700, it takes 3 to 5 hours until the pain subsides.
I will reach out to him tomorrow to see if he wants to make any changes.

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My doctor has always emphasized that she is treating the condition and not the symptoms. Of course, when the pain got really bad at one point I increased the Prednisone. However, going to reduce my 1 mg to 1/2 today. Moderate pain in shoulders and upper arms and hands. I have bursitis in my knees, along with old stress fracture that won't heal. Nobody knows the full nature of this beast and PMR can certainly affect different people in different ways. The only reason I will go back on this Prednisone when I'm done, is if pain becomes unmanageable or if Sed rate and CRP go up. More concerned about my type 2 diabetes, and osteoporosis. Fun times.

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@flymetothemoon

My doctor has always emphasized that she is treating the condition and not the symptoms. Of course, when the pain got really bad at one point I increased the Prednisone. However, going to reduce my 1 mg to 1/2 today. Moderate pain in shoulders and upper arms and hands. I have bursitis in my knees, along with old stress fracture that won't heal. Nobody knows the full nature of this beast and PMR can certainly affect different people in different ways. The only reason I will go back on this Prednisone when I'm done, is if pain becomes unmanageable or if Sed rate and CRP go up. More concerned about my type 2 diabetes, and osteoporosis. Fun times.

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My rheumatologist is very focused on what the bloodwork says. When I still had some ongoing pain he did crp and sed rate blood tests every two weeks. Once it was clear my inflammation was in the normal range consistently, even if I had a small amount of pain, he changed the bloodwork frequency to every 3 months. I take Tylenol once in a while for minor pain.

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@naezzo

I have been very recently diagnosed with PMR. The doctor put me on a regimen of 30mg per day. This worked great for the first 3 to 4 days. However, as of late, waking up in the morning with neck, shoulder, knee, wrist and hand pain. Take the prednisone at 0700 every day, takes 4 to 5 hours for relief.
I'm 5'9" and weigh 217, 59 years old.
Is anyone out there using a higher dose with better results? Does anyone have any suggestions?
Thank you.

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Hi @naezzo, a lower dosage of prednisone (about 20 mg) is supposed to miraculously make symptoms of PMR disappear, but it's companion disorder, Giant Cell Arteritis (GCA) requires a higher doaage of prednisone. I'm small, 5 ft., about 100 lbs and was put on 40 mg. Did your doctor ask you about scalp tenderness, inability to chew, jaw pain, low energy, a dry cough, vision problems? My PMR kind of left me, but I advanced to symptoms of GCA which can cause blindness or stroke if left untreated.

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@naezzo

I have been very recently diagnosed with PMR. The doctor put me on a regimen of 30mg per day. This worked great for the first 3 to 4 days. However, as of late, waking up in the morning with neck, shoulder, knee, wrist and hand pain. Take the prednisone at 0700 every day, takes 4 to 5 hours for relief.
I'm 5'9" and weigh 217, 59 years old.
Is anyone out there using a higher dose with better results? Does anyone have any suggestions?
Thank you.

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Hi, Naezzo,
There isn't a whole lot of information to go on in your profile. Did you have bloodwork done? I would assume you did. Were your markers for inflammation quite high? Because your starting dose is a bit higher than the usual dose, unless your doctor was wary of GCA at the time. How long have you been on the 30 mg.? When were you diagnosed? What you do say is that activity you do causes flares. Well, yes, they might well be doing that. What you need to understand is that your lifestyle might have to change while you are dealing with this disease. If your renal glands have shut down (don't know if they have yet - maybe too soon) then your body is operating on 30 mg of prednisone - period. When you start using up that prednisone by over exercising - or whatever - then the inflammation (aka pain) is able to take over. Go to HealthUnlocked/PMRGCAuk and look for the FAQ's in the Pinned Posts. Then go to Renal Glands and read that. And while you're at it, read anything else that you want to know about.
It really helps to understand what is going on in your body, and it seems that is something the doctors don't seem to want to discuss it. Good luck! BTW You might even need a higher dose, because you are still getting pain. Or you can ask your doctor about splitting your dose to AM and PM so you get better coverage. Not the usual, but many people do this with good results. You'd want to take the lesser amount in the PM in order not to disturb your sleep too much.

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Went to another neurologist today about my balance problems. He thinks it is an acumulation of mechanical problems that started when my PMR went undignosed and untreated for 4 years. Several factors since then have all added up. So this a warning, if you will. to get diagnosed and treated as early as you can. More PT in my future. If it will help, I'm all for it.

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