1. < Polymyalgia Rheumatica (PMR)
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Newly diagnosed and confused about the goal

Posted by cj762 @cj762, Apr 19 1:26pm

I am newly diagnosed PMR by my primary doctor. My symptoms started slowly with stiffness and pain in my hamstring area of my left leg only. Over a 3 month period of time the stiffness, pain, and feeling like the muscle would just snap in 2 spread to both legs and lower buttocks area, then to both hip girdle area. My doctor thought I might have sciatica and sent me to PT and an X-ray. X-ray showed L5. l4 area usual arthritic changes in a 73 year old body. PT made me feel better overall physically, but did nothing for the pain. Doctor then did blood work which showed protein reactive score of 17. Put me on 15 mg of prednisone. I have only been on it for 9 days. Some ever so slight improvement in morning pain, it doesn’t last quite as long as before medication, but still uncomfortable. If the leg pain is better the hip pain seems worse.
Is the goal of the prednisone to eliminate the pain or just lessen it? How long should I wait before saying although better the pain isn’t all that much better. I am not sure how to measure this. I am happy for any level of pain relief but was hoping for something better than what I am currently experiencing. I am expecting too much too soon?

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

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nursek75 | @nursek75 | Sep 15 1:34pm

Good luck I hope you find a pain solution and maintenance plan.

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kjoed53 | @kjoed53 | Sep 16 6:39am
In reply to @nursek75 "I was diagnosed with PMR Apr 2/26. I had been in pain since Dec 26/25 every..." + (show)
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I was diagnosed with PMR Apr 2/26. I had been in pain since Dec 26/25 every day. My Dr started me on Prednisone 25mg and I had to decrease the dose every 2 weeks by 5 mg. It took 2 days and my pain was gone!! I still continued to decrease the dose by 5 mg until I got to 10 mg. I then had to decrease my dose by 1 mg every 2 weeks until done. I did fantastic until I hit 4 mg and by 6 days my pain was back! I was told to bump up my dose to 5mg for 2 weeks but this still didn't help so then I went up to 6mg and did not see much improvement. So I had an appointment with my Rheumatoidologist who said I may not be able to decrease my dose every 2 weeks but only every month. So he bumped me back up to 7mg and I will take this dose for a month before trying to decrease again. He also said this is not unusual for patients with PMR and some people are on it for 2 years. Also, this is Chronic and will never go away for good but sometimes it does go into remission sometimes for years.

So don't be discouraged just go with it and one day the symtoms with subside and you may be okay for a short period or a long one.

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@nursek75
I couldn't use 5mg drops so I did 2.5mg drops and just halved the time so that I was tapering down over the same time period. I followed that process all the way through to the 1.5mg I'm currently on. My rheumatologist is very open to my thoughts and concerns. I'm also on a faster taper because of a subsequent SMM diagnosis, so maybe tapering this way works better for me than someone else.

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bindie | @bindie | Sep 16 12:28pm
In reply to @kjoed53 "@bindie The first goal is to become pain free or very close to it. Prednisone is..." + (show)
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@bindie
The first goal is to become pain free or very close to it. Prednisone is usually a necessary evil to accomplish this. If 10mg doesn't do that then it's usually increased to 15mg or more. The first goal is to be pain free or very close to it. Pain can cause weakness and instability because that's one of the body's reactions to pain. When movement causes pain, your body tries to stop you from moving.

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What a great way to explain the weakness. Thank you for taking the time to respond.

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bindie | @bindie | Sep 16 12:41pm
In reply to @jeff97 "@jabrown0407 I would modify your definition of the goal to be to achieve the best quality..." + (show)
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@jabrown0407 I would modify your definition of the goal to be to achieve the best quality of life given the competing challenges of PMR and its treatments. I don't think prednisone and the other drugs work completely for some people, so they can't be pain free. Also, based on posts to this forum, it seems that some people prefer to live with a certain amount of pain and discomfort over the side effects of prednisone and the other medications. So the goal for each person is to find the balance they prefer between PMR and its treatments.

For GCA things are much simpler. The goal is to fully control GCA so that it doesn't cause severe injury or death.

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@jeff97 Great way to say it; that's what I had been striving to get across.
Is also developing GCA a given if you have PMR?

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jeff97 | @jeff97 | Sep 16 2:38pm
In reply to @bindie "@jeff97 Great way to say it; that's what I had been striving to get across. Is..." + (show)
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@jeff97 Great way to say it; that's what I had been striving to get across.
Is also developing GCA a given if you have PMR?

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@bindie Fortunately most people with PMR do not develop GCA. Google says that only about 10 - 20 percent of people with PMR will also have GCA.

When I first got diagnosed with PMR and GCA, I assumed that if you got treatment for PMR, it would prevent GCA. But I learned that that is incorrect. I have read that the levels of prednisone used to treat PMR are not enough to control the symptoms of GCA. My initial dose of prednisone for GCA was 60 mg per day, and that is much higher than the usual starting dose of 15 - 20 mg to treat PMR.

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lhk2 | @lhk2 | Sep 17 9:14am

In response to c/762, I'm relativley new to PMR and prednisone treatment so I don't have an answer to what the goal is with prednisone, however, I can share my experience up to this point as it seems different from what you have been going through. I am 72 years old and was diagnosed about 3-4 months ago after dealing with pain mostly in my hip and legs. The doc that diagnosed me put me on a 20mg dose and it was like night and day. I felt almost no pain going forward. Went to a rheumatologist and she started me tapering prednisone by dropping 1mg every two weeks. During this tapering my pain did not increase until I got to 6mg, where I am today. Pain isn't bad, but noticable until my morning dose kicks in. I see my rheumatologist again next week and my main question is what is the goal? She has discussed Kevzara and another alternative but ruled them out for different reasons so I am not sure what she sees as next step. I want to get off prednisone as the potential side effects concern me though I am not experiencing any so far.

So in comparison, my experience with prednisone was much better than the pain you are dealing with and so I wonder if you need a higher dose of prednisone to control the pain. It seems that starting prednisone is to manage the pain until a longer term solution with less side effects is selected. That being said, I have seen on this forum that some people have been on prednisone for years.

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mp71 | @mp71 | Sep 17 10:26am

I;m happy for you that you got to taper that fast. You want off prednisone quick as you can. At 6mg your adrenal gland wants to start working again,as it should. The only way off is a very slow taper...i mean like half or quarter mg per month...let your adrenals come back to life and take over from prednisone. There will be a minor flare with each taper..try to tough it out if you can .If you can't then go back up to previous dosage. Me: diagnosed this past April...down to 8mg. Took my first shot of kevzara 2 days ago. I'm upset that I have to take a dangerous drug now just to get off prednisone. If you are on 6 mg think hard before going on that...try an anti-inflammatory diet instead.

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tweetypie13 | @tweetypie13 | Sep 17 10:59am
In reply to @mp71 "I;m happy for you that you got to taper that fast. You want off prednisone quick..." + (show)
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I;m happy for you that you got to taper that fast. You want off prednisone quick as you can. At 6mg your adrenal gland wants to start working again,as it should. The only way off is a very slow taper...i mean like half or quarter mg per month...let your adrenals come back to life and take over from prednisone. There will be a minor flare with each taper..try to tough it out if you can .If you can't then go back up to previous dosage. Me: diagnosed this past April...down to 8mg. Took my first shot of kevzara 2 days ago. I'm upset that I have to take a dangerous drug now just to get off prednisone. If you are on 6 mg think hard before going on that...try an anti-inflammatory diet instead.

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@mp7good advice abt taper, my dr said no more than 25% drop and stay at that level until plain free,

…..I am 80yo female been on Kevzara for a year +. Now In the process of trying to taper off a second time. I don’t take meds even for a headache , and this process has been brutal on my psyche. (Sound familiar?)
I must add I have no other health issues.

With that said, open your eyes to alternative ways. I wasted 6 months resisting the Kevzara, until the DR. explained that IT WOULD HELP ME GET OFF PREDNISONE. Kevzara takes up to 3 months to kick in, at which point I was fully off of prednisone.
Also, any pain you experience…is it PMR pain or part of life pain?
Re: the warning of side effects, with no other health issues, my concern was the possible infection increase. So far so good.

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