PMR Taper and pain

Posted by riji @riji, Jan 5 10:29am

After 2 years with PMR, about to go to 2 mg of prednisone and feel like I did back 2 years ago...is the PMR still in me or is it the taper or both?
Thanks for any info.

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@54pontiac

I have come to the conclusion that what matters is the pain/side effects, not what a doctor thinks is best or our age or what some numbers on a page seem to indicate. Living with pain is not living. If we have a way to control it that is not worse than the pain, we should use it. The only absolute is that everybody is different. My two cents.

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54pontiac, you nailed it in a minimum number of words. The other absolute from everything I've seen and read is that prednisone is the only proven drug that can control PMR pain and inflammation. We all get to weigh the side effects versus pain. For me, the option of being an invalid instead of a hard working guy who loved his work wasn't an option. I've had to deal with some side effects from prednisone that aren't nice but I freely made that trade to end up with a decent quality of life over the 7 years I've had PMR. Nothing wrong with occasionally mourning the life we used to have before PMR, but I choose to focus on celebrating what I'm still able to do thanks to prednisone and in spite of PMR.

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@lowell77

Hi Gang! Tapering from 25 mgs of predisone about five months ago down to 10 now for my PMR. But lately feeling some slight return of symptoms -- some morning stiffness and slight aches in wrists and shoulders. Overall discomfort is tolerable at this point. Not wincing in pain too much. So I am inclined to tough it out and keep tapering with a goal to get off it in ten months.
My question: How bad must it get before you up your predisone dose a notch?

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Hi lowell77,

Just giving my opinion from personal experience. I always first look at what I've been doing over the past 3-4 days. Is there something that I've done that could have caused the stiffness and aches in the wrists/shoulders? One time I was ready to increase my dose until I remembered about helping load and unload some furniture from a pickup truck. I did minimal lifting but it was awkward. I gave myself a couple more days and sure enough, the symptoms were gone. Personally, if I can't find something that I've done that's causing the pain and aches, then I'm looking at increasing my dose to the previous level that was effective. Sometimes a dose might be just a hair low to be effective but it takes a couple weeks for the inflammation to accumulate and make itself known through the pain and discomfort. I don't like to give the pain a head start - I try to catch it early so I don't have to go to a much higher dose so it'll get under control again.

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@riji

I looked it up and kevzara has some pretty nasty side effects---don't like messing with my immune system. I'll ask doctor anyway.

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Actually it doesn’t have nasty side effects. An increased openness to infections. But nothing else. Methotrexate has more, at least for me, including bad headaches and fatigue. Nausea one day a week but stuck with it for the time being. Taking Kevzara and meth together.

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@raven1955

54pontiac, you nailed it in a minimum number of words. The other absolute from everything I've seen and read is that prednisone is the only proven drug that can control PMR pain and inflammation. We all get to weigh the side effects versus pain. For me, the option of being an invalid instead of a hard working guy who loved his work wasn't an option. I've had to deal with some side effects from prednisone that aren't nice but I freely made that trade to end up with a decent quality of life over the 7 years I've had PMR. Nothing wrong with occasionally mourning the life we used to have before PMR, but I choose to focus on celebrating what I'm still able to do thanks to prednisone and in spite of PMR.

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Yes, raven1955. I am saddened by people that report that their doctors are insisting they live with pain rather than stay on prednisone. Or they have to go on other drugs whose side effects may be worse for that individual. If anything, I hope these group threads help empower people to take charge of their own treatment and challenge what does not work for them.

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@barracudacool

I have just started Kevzara along with the methotrexate. It is a biologic which targets Il- 6. I had my first shot almost two weeks ago. Blood work drawn this past week revealed some fairly startling news. My inflammation numbers, both sed and reactive protein are now normal after a year of pmr. Even on 30mg then 20 to 10mg of prednisone over the past year the inflammation numbers had remained high. So I am so hopeful now that something will help me with the below 10mg taper.

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@barracudacool Do you feel methotrexate has helped or does anyone else have any experience with it?

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@marymckeith

@barracudacool Do you feel methotrexate has helped or does anyone else have any experience with it?

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It did and I know that meth has really helped others. But when I got down to 8mg of prednisone everything blew up on me. Looking back over the year it is clear that the meth was just not handling things for me. I never was without inflammation and major flare ups. Now on Kevzara and meth and inflammation normal. I am just one of those people who has difficulty tapering and Kevzara is really aimed at us.

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@marymckeith

@barracudacool Do you feel methotrexate has helped or does anyone else have any experience with it?

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@barracudacool Thanks so much for your reply. I will continue to stay on methotrexate for a while. I am also on 5ml Prednisone.

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@raven1955

Hi lowell77,

Just giving my opinion from personal experience. I always first look at what I've been doing over the past 3-4 days. Is there something that I've done that could have caused the stiffness and aches in the wrists/shoulders? One time I was ready to increase my dose until I remembered about helping load and unload some furniture from a pickup truck. I did minimal lifting but it was awkward. I gave myself a couple more days and sure enough, the symptoms were gone. Personally, if I can't find something that I've done that's causing the pain and aches, then I'm looking at increasing my dose to the previous level that was effective. Sometimes a dose might be just a hair low to be effective but it takes a couple weeks for the inflammation to accumulate and make itself known through the pain and discomfort. I don't like to give the pain a head start - I try to catch it early so I don't have to go to a much higher dose so it'll get under control again.

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@raven1955. I’m into my second month of having tapered completely off prednisone. I fully expected to experience some discomfort and stiffness because prednisone had masked those symptoms for so long . I also evaluate if something I’ve lifted or if I’ve stretched too much could account for my stiffness and discomfort. I ask myself ‘is this a flare?’ If the pain does not get worse, but gradually subsides, I know it’s a part of the process of PMR symptoms leaving my body. I read on this site that symptoms could persist for a few months, but that gradually they will subside after tapering off prednisone and so far that has been my experience. I’m very gradually getting back to ‘me’ and compared to the pain and stiffness I experienced in the beginning, this is something I can endure.

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@hunib33

@raven1955. I’m into my second month of having tapered completely off prednisone. I fully expected to experience some discomfort and stiffness because prednisone had masked those symptoms for so long . I also evaluate if something I’ve lifted or if I’ve stretched too much could account for my stiffness and discomfort. I ask myself ‘is this a flare?’ If the pain does not get worse, but gradually subsides, I know it’s a part of the process of PMR symptoms leaving my body. I read on this site that symptoms could persist for a few months, but that gradually they will subside after tapering off prednisone and so far that has been my experience. I’m very gradually getting back to ‘me’ and compared to the pain and stiffness I experienced in the beginning, this is something I can endure.

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I'm hoping that I will be free of this soon but I also expect some pain and stiffness to continue. It is a very frustrating condition and I feel that the prednisone really did nothing except worsen my osteoporosis ... but it did give me relief until I tapered under 7 mg and then it began all over again...down to 2.5 now and hoping to be off of it by my second year anniversary of starting prednisone! Thanks for your story...it helps to hear that others are going through the same trial. I try to remember that there are so many worse illnesses.

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@riji. This process is frustrating and at times it feels as though you’re treading water. Persist. Don’t overdue activity, but do some consistent activity, even if it’s just stretching. Remember, this too shall pass—but it’s taking its sweet time! Be patient with yourself. My mantra is ‘be in good health’.

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