Better to be in some pain or better to up the dose of prednisone?

"if Kevzara or other biologics can treat PMR without the nasty side effects of Prednisone, why isn't that prescribed first?"
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The simple explanation is that biologics cost too much. Prednisone is as "cheap as chips" as some people say. However, I think the cost of treating the adverse effects from prednisone should be included in the cost analyses. For some people, there are nasty side effects from biologics too. That hasn't been my personal experience though.
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"My question is, is it better to tough it out with the pain as long as I can function, or would it be better to up my dosage, even marginally, and feel somewhat better?"
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In my opinion, this question needs to be individualized. I would ask myself if the "short term pain" of not increasing my dose was worth the "long term gain" of getting off prednisone. For me, the answer changed over time. Part of it was how "tolerable" the pain was. I couldn't tolerate the pain at the start. Over time, my personal evaluation of the pain changed.

I don't know if my "pain tolerance" increased or the pain was less. It was quite possible that both these things happened.

On the other hand -- there was an undeniable threshold of pain where I drew the line and increased my dose. There were other times when I took solace in the fact that the pain had been worse and I didn't increase my dose.

Good question @rnm. I think along the lines of @dadcue that we are all different when it comes to tolerating different levels of pain. My rheumatologist suggested I keep a daily log of my dosage and my level of pain when I got up each morning so that when it was time on my schedule to taper to the next lower dose I could refer to my level of acceptable pain. For me, acceptable pain was 2 or less on a scale of 0 to 10. If my pain was greater than 2, I would either tough it out for another day or two at the same dose to see if it came down. If the pain got better I would go to my next lower dose. If it got worse, I could go back to the previous dose or go back to half of the previous taper. I usually tried half of my previous taper first. It helps if you have a rheumatologist you trust and can talk to about levels of pain and tapering.

Hi, I’m Amy. I agree 100% with this reply. Prednisone is a slippery slope, a love-hate relationship at best.

I got really tired of pain while going almost a year without my PMR and GCA being diagnosed (I never went to a doctor). I was treating it with acetaminophen, and it didn't help much. I haven't had any pain at all in 9 months since I started treatment (prednisone and Actemra), and that has been extremely enjoyable. I'm currently at 5 mg prednisone to go with weekly Actemra injections, and I'm feeling really good. The side effects from the prednisone have decreased quite a bit. My cholesterol has come down, and I've started losing the small amount of weight I gained and the moon face.

I have pondered the same question as to why not start the Biologics first without the prednisone. I see some people even have difficulty weaning off the biologics. Regarding pain levels. I am in agreement with many that it is an individual assessment. Eight months of prednisone therapy was enough! When I tapered to 2 mg my PMR pain returned. I stayed there for awhile and then made the decision to stop the prednisone. That being said, I still have polymyalgia pain that comes and goes. It is minimal and easily controlled with over-the-counter ibuprofen or Aleve. Once I got through the change of seasons with Spring I seem to be doing better. The winter cold increased my pain level. I’m looking forward to warmer sunny days soon. Wishing you well on your journey.

I think the problem with Biologics is that they take some time to work, like several months potentially. Prednisone can take effect almost immediately, depending on the dose.

For many autoimmune conditions, prednisone is used initially as a "bridge" to treatment with a biologic. Prednisone works quickly while waiting at least 3 months for the full effects of the biologic. Possibly ... the biologic might not work so there could be a 3 month delay in being treated.

For GCA, the risk of losing one's vision is a distinct possibility while waiting for the biologic to work. For PMR, the pain typically is just too severe not to start prednisone.

By comparison, when I took 60-100 mg of prednisone for uveitis, it was also to preserve my vision. The difference was that I could taper off prednisone in a couple of weeks. Remission was sustained until the next flare of uveitis. My case of uveitis was very responsive to prednisone and I didn't have to take prednisone very long for a "sustained remission" of uveitis.

Invariably the next flare of uveitis was a year or so later. I don't think biologics for uveitis existed 35 years ago. I gained so much experience with tapering off prednisone that my ophthalmologist documented that I was skilled with prednisone tapers after more than 30 flares of uveitis.

The uveitis specialist wasn't impressed with my ability to taper off prednisone. She said I should have started a biologic years ago to prevent the uveitis flares from recurring so much.

I chose to tough it out because the side effects of prednisone (I have osteoporosis) and potential side effects of all the alternatives scared me. I started experiencing some pain and fatigue with every taper below 3 mg. The pain and fatigue continued for nearly 4 months after I finally hit zero pred. My strategy was to stay the course as long as I was improving (even just a little) or not getting worse. I know I was lucky.

I have read the post today. I haven't been official diagnosed with PMR. But just in a second really bad flare, last one was in Oct 2024. I have had inflammatory issues for my whole life.....now 78. I saw a Rheumatologist starting in 2019 thru 2022.....but nothing was showing as PMR, until last year. All he said that he thought I had fibromyalgia. I have a high ANA. I have managed my pain and flares with Aleve, lidocaine topically and other over the counter meds for pain. I have tried many other medicines.....Gabapentin etc.....the list is too long to list!
My PC doc gave a referral back to the rheumatologist last Oct.....and it got caught up in their system.....just got that worked out.....see him in late May!
Meanwhile I deal with my PC doctor.....
Is my progression of PMR typical?
BJB

Good question. I’m asking myself the same thing. I’m in pain every morning but not in the afternoon or evening. I’m presently on 5mg prednisone and want off asap. I started hydroxy… but hasn’t kicked in yet and it’s been about 9 days. I plan on tapering 1mg every 2 weeks and see how that goes. May try 5 one day and 4 the next but haven’t had relief since I was on 10mg but will not go up. It that a mistake? I don’t know. I’m finding the weather has an effect-rainy days (lower barometric pressure) take a toll. Good luck and I hope you can find an answer. If I figure it out, I’ll share.