How much pain to tolerate
I started with PMR in June - July and began with 20 mg prednisone and am 10 weeks into methotrexate. I do have hand pain, tight leg muscles that loosen during the day and shoulder pain. Question is how much pain is worth tolerating to keep reducing prednisone? Should I go back up to 5 mg or stick it out and hope the methotrexate eventually takes over and gets rid of these pains? Also if my Dr. thinks the methotrexate isn't performing well me wants to switch me over to Cimzia - any insights or comments would be helpful. THANKS
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Welcome @alancant, That's a good question which a lot of us have thought about. For me it was anything above a 2 on a personal pain scale of 0 to 10. I do think everyone has differences in the amount of pain that they feel is tolerable during treatment for PMR. I only used prednisone for both of my PMR flare ups but others may have experience they can share with you on Cimzia and Methotrexate. I know it's not helpful to hear you are still early in your diagnosis of PMR since it started in June but my first flare up took 3 and half years to taper off and six years later when it reared it's ugly head it took me 1 and half years to taper off.
While you wait for responses you might find it helpful to scan through the list of comments from other members who have used Cimzia - https://connect.mayoclinic.org/search/comments/?search=Cimzia.
Do you keep a daily log of your level of pain when you get up in the morning and your dosages?
Question is how much pain is worth tolerating to keep reducing prednisone?
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I don't think you should keep reducing with increasing pain. Similarly, "tolerable pain" isn't a good reason to increase your dose. There isn't a correct way to taper prednisone. except to taper slowly as pain levels and side effects allow --- faster tapers for some ... slower tapers for others. Only you can decide how much pain is tolerable. Depending on the person, the side effects of Prednisone are also tolerable or intolerable.
Staying on the same dose is an option. You don't have to increase or decrease your dose. My rheumatologist told me a "stable dose" is also important
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CIMZIA is a prescription medicine called a Tumor Necrosis Factor (TNF) blocker. I don't want to second guess your doctor but TNF blockers aren't recommended for PMR.
EULAR/ACR guidelines for PMR say the following:
"The panel strongly recommends against the use of TNFα blocking agents for treatment of PMR."
https://ard.bmj.com/content/74/10/1799.full
These are only recommendations so there isn't any rule that says your doctor can't try Cimzia.
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Cimzia is a treatment for various types of inflammatory arthritis which have symptoms very similar to PMR. Maybe your doctor is leaning toward a diagnosis of inflammatory arthritis instead of PMR.
The following is easier to read and summarizes the ACR position about PMR.
https://rheumatology.org/patients/polymyalgia-rheumatica
There is another biologic called Kevzara that is mentioned.
"Recently the Food and Drug Administration also approved the use of a biologic Kevzara (sarilumab) for PMR."
There are different types of biologics. Kevzara blocks the IL-6 cytokine and might work better than a TNF-blocker.
How are you tolerating Methotrexate my doctor wants me to start by self administered injections I am scared regarding the side effects though. I am titrating down my prednisone dose am taking 2mg for the last month but it appears to be getting worse again!!!!
I've had little to no side effects from the methotrexate, frankly I can't think of any problems that I can attribute to that drug. I do take 2.5 mg x 6 tablets just one day per week, taking 3 x 2.5 mg when I get up and the remaining 3 x 2.5 mg around 3:00 pm. I can't say for sure if it is working but I do experience less stiffness and pain and have reduced prednisone from 20 mg / day to 2.5 mg/day. So although I'm not pain free I am pretty much functional - gym 6 days / week and lots of yard work, etc...There was a time not long ago that I needed a shoehorn to put my shoes on - that is gone and my hamstrings and calf muscles killed me that is gone too. Hope this helps and hope methotrexate works for you.
Methotrexate works for many people but not for everyone. The trick is finding what medication works best for you. Not many doctors want their patients on "long term" prednisone. Long term is hard to define and mostly depends on what side effects from prednisone a person experiences. The problem is finding an alternative to Prednisone that works well when someone is unable to taper off Prednisone.
Long term prednisone use is defined as anything more than 3 - 4 weeks, anywhere I've read about it. Short term use can be reduced and discontinued quickly and doesn't require a slow reduction taper. Anyone taking it for PMR is using it long term with the risks that come with long term use.
"Anyone taking it for PMR is using it long term with the risks that come with long term use."
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That is where the problem lies. It is why I try to advocate for alternatives to prednisone. Accepting that Prednisone is the "only option" for PMR wasn't possible for me. The following link was where I was about 6 years ago. It isn't about what I wrote. Rather it was the response that I got.
https://www.healingwell.com/community/default.aspx?f=16&m=4073463
I survived while I took Prednisone for a long time. I'm not sure when I knew that something needed to change but it was after a few years. The person who responded to me wasn't as lucky as I was. She didn't have PMR but everything she wrote was pertinent to me.
I do believe we need to transition to something else instead of Prednisone sooner rather than later.
Exactly why I'm trying to determine an acceptable level of "pain and discomfort" and ensuring I am not damaging my joints. What I think (no proof just experience) is that taking prednisone and trying to reduce it's use down to zero is not a straight line. I am down to 2.5 mg/day and want to get to zero but about once a week I need to boost back up to 5 - 7.5 mg for the day. Then back down to 2.5 mg the next days. So when I get to zero I'm not entirely sure if I'll have to bump up to 2.5 or 5 mg for a day or two but I'' definitely check with my rheumatologist about it. any experience with this let me know.
There is an alternative to Prednisone now! It's Kevzara. Patients are initially put on Prednisone and a taper is attempted..if it fails, Kevzara ia added, the Pred is tapered off, and the patient can remain on Kevzara until remission is reached. While Kevzara does have side effects, they're detected by lab tests, so quality of life is maximized. My PMR responded like a dream to Kevzara - which acts on a different inflammation pathway than Prednisone. My stiffness and pain are reduced enough to allow me to return to walking as an exercise and my range of motion has gone from significant limitations in major joints to being able to do all the standard swim strokes. I'm currently on 4 mg Pred (from an initial dose of 15 mg) and decreasing 1 mg each month. Kevzara was approved by the US FDA in 2023. I'm not symptom free - recently realized my ability to use denial and distraction to moderate my perception of pain also comes with a cost - I have real pain. But I'm able to function better, much better, for a larger part of the day.