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

Wow......the weather is something I've thought caused a lot of my bad days! I'm not seeing my rheumatologist till end of May, I'm taking it a day at a time.....seeing how I feel at 10 day on 15mg of prednisone......my pain level, without Tylenol or just 1 a day. Then will try to start cutting back! I had a day Tuesday.....so not sure how it will go!

Do you know what your CRP level was on your blood work? My last flare in Oct, it came down fairly fast.....2-3 weeks. But I'm don't sure this time......this was like hitting a brick wall!

In theory, it shouldn't be a question of one or the other but for each person it is quite tricky to make the correct decision. If the pain comes from general prednisone withdrawal side effects and not PMR then it is likely better to tough it out for 3-7 days or so until they ease. As that strategy will reduce the steroid load.

If the pain is coming from PMR and then the short answer is that the prednisone dose is not enough to control the underlying inflammation and it will likely be better to increase the steroid dose to deal with the active PMR. This is an indication that the amount you last tapered was too much. Otherwise the inflammation can continue to build up and a more painful flare is likely. The steroids don't cure the underlying PMR. All they do is remove the current inflammation being caused by PMR.

Distinguishing between withdrawal pain and PMR pain is difficult. And you can have both at the same time if the taper was too large and too fast, One thing is that withdrawal pain is more likely to be eased by paracetamol or similar painkillers (but not anti-inflammatories like ibruprofen). And the withdrawal pains should also ease over a relatively short period.

There is a lot of information about this on the PMRGCAUK charity forum at Health Unlocked.

I have been told on several occasions that the biologics are very expensive, and prednisone and prednisolone are cheap and effective at relieving symptoms, even though they can't cure PMR.

Exactly

The following link says the following:
"A patient may notice a decrease in symptoms as soon as 1 week or as long as 12 weeks after starting a biologic, and symptoms may continue to improve for months afterward."
https://www.arthritis-health.com/treatment/medications/biologics-basic-facts-patients#:~:text=Biologics%20Take%20Time%20to%20Work&text=For%20example%2C%20many%20people%20who,develops%20antibodies%20to%20the%20drug.
---------------------
The above link also says:
"A biologic drug targets and prevents a specific reaction from happening, stopping the inflammatory process in its tracks. In contrast to biologics, conventional drugs treat general inflammation (and resulting symptoms like joint pain) after it has begun."
----------------------
My experience with Actemra was the same. It was unclear to me how fast Actemra worked. I was on 10 mg of prednisone when Actemra was started. My rheumatologist said that I needed give Actemra 3 months to see if it would work for me.

I was used to tapering by 1 mg per month so that was how I tapered from 10 mg to 7 mg. It took 3 months to taper to 7 mg just because that was how I usually tapered. My pain didn't increase on 7 mg. My observation was that Actemra "seemed to work" but I didn't know if it was working or not. I didn't have a flare at 7 mg and didn't need to increase my prednisone dose was all I knew.

My assumption at the time was that I should be able to taper faster IF Actemra was working. I decided to test my assumption and tapered by 1 mg per week from 7 mg to 3 mg. Actually, I was getting impatient and I wanted to get the "inevitable flare" over with.

I was getting misinformation about fast tapers and that it was safe to take 5 mg of prednisone for the rest of my life. The "experts" on another forum said doctors in the USA were "breaking the rules" by treating PMR with Actemra. This was in 2019 so PMR being treated with Actemra was unconventional at that time.

When I got to 3 mg without a flare, I was nervous (more like anxiety) about tapering so quickly. I felt okay but I was conditioned to think that I shouldn't taper off prednisone so quickly.

I saw an endocrinologist about 2 years prior to this when I was still taking 15 mg of prednisone. She said there was nothing she could do if I still needed that much prednisone. I remembered the endocrinologist telling me if I ever got to 3 mg that I should come back to see her.

I told my GP that I was unsure about what to do. I mentioned to my GP what the endocrinologist told me and that prompted him to check an a.m. cortisol level. My cortisol level was low so I was told not to taper any lower than 3 mg.

It took at least 6 more months for my cortisol level to improve. My prednisone dose hovered around 3 mg for months because of adrenal insufficiency. As far as I could tell Actemra was working for PMR but I had some "discomfort" because of adrenal insufficiency.

Unless it is determined that your PMR is in remission (typically determined by/confirmed with SED/CRP testing), continuing to taper is almost guaranteed to result in ongoing PMR pain.
One usually stays on a dose that completely controls PMR pain until the inflammatory tests return to normal levels. For you, that dose might have been 10, and you might have started tapering prematurely, before your PMR was in remission. Or, in your haste to get off of prednisone, you tapered too quickly. Or, you are tapering without waiting to determine if hydroxy is going to work. Below 10, tapering at 1 per month seems to work for most folks. Below5, at 0.5 per month. But all that presumes that your PMR is in remission.
Good luck.

Debbie - Everyone feels pain differently, so ultimately, you will find the treatment solution that best suits your goals. None of it is easy - prednisone 15 mg. gave me immediate relief and I able to resume activity. Then the rheumo prescribed hydroxy at 200mg. twice a day, with a long prednisone taper. Tinnitus and depression set in. While Lexapro treated the mood disorder, I wanted off all meds completely. I toughed it out for 2 months, dealing with pain through meditation, stretching and tylenol. But now I am back on prednisone which has given me pain and mental relief. It's a journey with no one answer. Just hang in there - this thread is helpful for its kindness, shared experience and compassion.

One additional thing ... the endocrinolgist monitored my cortisol level while I was on 3 mg of prednisone. She said I SHOULD NOT increase my prednisone dose unless it was absolutely needed. She also said I SHOULD increase my prednisone dose "if I felt the need' but "preferably" I should call her first before increasing my dose. She provided me with a direct number to call.

She implied that if the need was an adrenal crisis that I didn't have to call her first ... take prednisone immediately and call her later. We discussed the details about what an adrenal crisis might feel like.

When it was time to discontinue prednisone ... the endocrinologist told me 3 mg was a small dose of prednisone. She said I could simply stop prednisone without a taper. She said it "might be safe" to stop taking 3 mg of prednisone and go directly to zero as long as my cortisol level was "adequate." She just reiterated that I should take prednisone again if I felt the need.

The endocrinologist called my rheumatologist to verify that I didn't need prednisone for PMR. I just verified that Actemra seemed to work.

Two time cancer survivor here. No biologics for me, the risk is too great. I have 3 diagnosed autoimmune conditions, including PMR.

I don't think I would take a biologic if I had a history of cancer. My wife is a cancer nurse and she says prednisone "enhances the cancer medications" but doesn't treat cancer.

I don't know all the details but apparently some cancer patients are given Actemra because of "cytokine release syndrome" from the cancer treatment.

Seriously ill Covid patients were treated with Actemra (tocilizumab) for this reason as well. It is also called a "cytokine storm."
https://pmc.ncbi.nlm.nih.gov/articles/PMC8662023/
--------------
My rheumatologist says I have at least 3 autoimmune conditions and says that is why I need a biologic. He says Actemra isn't "optimal treatment" for all my autoimmune conditions. I was allowed to choose the biologic that works best for me. Actemra targeted PMR but seems to work well for my other autoimmune conditions.

"One usually stays on a dose that completely controls PMR pain until the inflammatory tests return to normal levels."
-----------------------
My inflammatory markers were never normal on prednisone. My symptoms were mostly controlled if I took enough prednisone. I wasn't able to discontinue prednisone which was why PMR was called "refractory."

I don't know how to account for people who have normal inflammation markers but still have PMR. I believe they have PMR because they were diagnosed with PMR.

A funny thing happened when I started Actemra. My inflammation markers dropped to almost zero. I was concerned that my inflammation markers were "too low." I had never seen them that low before.

Someone tried to say my inflammation markers weren't reliable on Actemra but I don't have any PMR symptoms anymore. My inflammation markers went up again when Actemra was withheld for a longer interval but Actemra wasn't stopped. I had slightly more pain but not a flare. I assume they are monitoring my inflammation markers for some reason while I am on Actemra. My markers are negligible as long as I do another Actemra infusion within 6 weeks. My infusions are scheduled every 4 weeks.