1. < Polymyalgia Rheumatica (PMR)

How much pain to tolerate

Posted by alancant @alancant, Nov 7 8:39am

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

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

Mentor
John, Volunteer Mentor | @johnbishop | 5 days ago
In reply to @aussiedogmom "There is an alternative to Prednisone now! It's Kevzara. Patients are initially put on Prednisone and..." + (show)
@aussiedogmom

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.

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If you are looking for more members who have posted about Kevzara for PMR, there are more discussions and comments. Here is a search link that lists the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=KEVZARA%20for%20PMR.

REPLY
elizadolittle | @elizadolittle | 5 days ago

I've been on 5mg of prednisone for years. The doctor who described it for me said his Dad had been on it for years without any complications. I'm taking Tramadol combined with acetominophin for my spinal stenosis. It's the lowest dose of one a day helps. When I'm spending a lot of time on the computer, there are times that I have to quit due to the pain in my upper arms. What should I be looking for in regards to prednisone

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alancant | @alancant | 4 days ago
In reply to @aussiedogmom "There is an alternative to Prednisone now! It's Kevzara. Patients are initially put on Prednisone and..." + (show)
@aussiedogmom

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.

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I'm close to 100% functional but not 100% pain free, but the pain I have isn't horrible. I'm thinking I'll stick to methotrexate and eventually no prednisone as I'm down to 2.5 mg/day so zero is in my future. Assuming no flair ups I think I'll not switch medication at this point. Thanks to all for your input - this is a great group of folks that share experiences that definitely help!

REPLY
art43 | @art43 | 4 days ago
In reply to @alancant "Exactly why I'm trying to determine an acceptable level of "pain and discomfort" and ensuring I..." + (show)
@alancant

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.

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I have successfully tapered with minimal pain , and no prednisone increases as follows :
From 10 to 5 at 1 per month.
From 5 downward (now at 2) at 0.5 per month.
Decreases in larger increments often seem to produce excessive pain problems as evidenced by reports in this support group.
Some pain can be expected while your adrenals restart cortisol production. Unless it can be confirmed with inflammatory marker testing, it is probably not PMR and therefore should not provoke an increase in prednisone dosage.

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rl24 | @rl24 | 3 days ago

These conversations have been so helpful. Thanks to all who contribute.

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brooklyn1947 | @brooklyn1947 | 3 days ago

I started Methotrexate & was feeling pretty good after 3 weeks, so my Dr had me taper off from 5 mg in AM & PM to 5 in AM, but 2.5 in PM. He wanted to increase my Methotrexate, but my blood work showed a slight elevation in my Liver. I started having a lot of discomfort, so I had to go up to 5 in AM & PM.
I am not a happy camper!

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2 replies
kemt8283 | @kemt8283 | 3 days ago

PMR does go into remission and will have the ability to not take prednisone. I was in remission for several years but now I am in full blown pain. I have been tapering down from 10 mg while using Kevzara. I am now at 5 mg and the Kevzara and can hardly move most days. I push myself through the day, things take me twice or three times longer to do but I will not settle for just sitting. Going to the doc tomorrow.

REPLY
karo89135 | @karo89135 | 3 days ago
In reply to @alancant "Exactly why I'm trying to determine an acceptable level of "pain and discomfort" and ensuring I..." + (show)
@alancant

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.

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My previous rheumatologist had me taper down 1 mg per month…slowly. If I had a flare, which could be terrible, I was to go back up to mg before the flare. It sounds maybe you’re reducing too fast? The ultimate goal is to be off the prednisone but I’m at 11 years now, and it won’t happen for me.
In fact, I’m thinking seriously of going back to UCLA or Mayo Clinic. Vegas has no reliable rheumatologists. Many have sold to corporations, retired or left town. Good luck.
Karo89135

REPLY
art43 | @art43 | 2 days ago
In reply to @brooklyn1947 "I started Methotrexate & was feeling pretty good after 3 weeks, so my Dr had me..." + (show)
@brooklyn1947

I started Methotrexate & was feeling pretty good after 3 weeks, so my Dr had me taper off from 5 mg in AM & PM to 5 in AM, but 2.5 in PM. He wanted to increase my Methotrexate, but my blood work showed a slight elevation in my Liver. I started having a lot of discomfort, so I had to go up to 5 in AM & PM.
I am not a happy camper!

Jump to this post

When I got to 10, my taper became 1 per month. Dropping 2.5 at that point seems to be a bit much.
I tapered at 1 down to 5, and now at 0.5 per month.
I have not had any serious issues on this schedule. Some transient osteoarthritis issues, but nothing I cannot live with. Good luck finding what is right for you.

REPLY
1 reply
brooklyn1947 | @brooklyn1947 | 2 days ago
In reply to @art43 "When I got to 10, my taper became 1 per month. Dropping 2.5 at that point..." + (show)
@art43

When I got to 10, my taper became 1 per month. Dropping 2.5 at that point seems to be a bit much.
I tapered at 1 down to 5, and now at 0.5 per month.
I have not had any serious issues on this schedule. Some transient osteoarthritis issues, but nothing I cannot live with. Good luck finding what is right for you.

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Thank you for your reply! I will discuss with my Dr at my next appointment

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