Conflict with Rheumatologist over taking Prednisone for PMR in AM/PM

@cazwell50

You must have done something right.

A+ for doing it the textbook way and being off prednisone in 1 year. I have read that people who are more likely to relapse are the people who don't receive medical guidance. On the other hand, I don't think I did anything wrong because I tried all kinds of ways and it took me 12 years with medical guidance to get off prednisone. What amazed me the most was how I could taper off prednisone in one year after Actemra was started. I have been off prednisone for almost 6 years without any relapses. I feel much better even though technically I still have PMR.

I think the number of PMR relapses which people have while on prednisone is the main problem with prednisone. The "failure rate" while doing prednisone tapers is truly astonishing. The only recommendation for relapes is to take more prednisone and try a slower taper. In my way of thinking that only guarantees people will be on prednisone for a long time especially when a slower taper also ends in a relapse. Being on prednisone for years is the last thing doctors and patients should want. Long-term use of prednisone suppressed my adrenal glands, making my body extremely sensitive to even tiny cortisol drops was mostly the problem that I had.

It has taken me a long time to recover from my long term prednisone use too.

At height of my dosage (20mg), took 15mg in morning as my rheumatologist preferred, and 5mg at night before bed as my body needed to keep pain at bay.

When tapering, went back and forth by taking some from night, then day.By the time I was down to 12.5mg, only morning dose and had stayed that way.

Still tapering after transition to Kevzara. Down to 5mg.

Overall, based on this being my second onset of PMR over 9 year and was able to completely go off prednisone the first time, I recommend you listen to your body and intuition over your doctors dictates. This is a whole-body infliction and all of our bodies have undergone different stresses throughout life. It might take a week, a month or three months before titrating another amount. And that amount may be more or less than others experience.

I would take your doctors advice as just that -- and use it as the max to taper. If you want to go slower, then slow it down. It's your game and you decide.

Hi There, I found spitting my doses between am and pm works for me.
When I took all in the morning I woke up with pain during the night.
I really appreciate the stories as this journey is difficult in so many ways.

You know what works for your body.
I want to acknowledge that the early stages of PMR really freaked me out, and it's hard to strategize for what we need when in pain. So if you can find a pushy friend to go with you to appointments, that would be a great idea.

1. If the doc isn't there, he doesn't know what you're taking when. I cut tabs in half, dosed when it made sense for my body.
That may feel a bit sneaky to some, but I framed it as honoring what I knew to be true about my body.
2. I found out my primary care had had PMR, too. If needed, she would have prescribed prednisone, too. More than one doc can help. Reach out to docs in your sphere.
3. Get what you need. I had a GREAT rheumatologist for the first year, then he left and now I have a jerk who tells me he's glad Kevzara is working, but he's not even sure it's PMR based on notes my original doc made (it's an ego thing, I had the "classic sx", he's just an ass.)
I asked him if the diagnosis mattered at this point. He said no not really.
I asked him if he would continue to prescribe my Kevzara (that does need to be a rheumatologist apparently). He said yes.
I said great, then we are done here.

It's your body, you're the one having the experience.
Please center yourself.
Use the system.
Use the system to get what you need.

I take mine right before I go to bed. I tried all times. This owrks best for me. I sleep all night and am able to run or walk early in the morning. My doctor was great about it.
You have to do what's right for you. Not sure what your rheumy's problem is.

@elizterrel
I'm not sure why anyone stays with a doctor that doesn't listen and that they clash with. My rheumatologist listens to me and allows me to follow what my body is telling me in most situations. If he disagrees, he provides clear and logical reasons why he disagrees. It's not always about today. PMR must be managed all the way to the exit ramp. If I suggest something that interferes with the exit strategy then I want to know.

Your rheumatologist is likely pushing for morning dosing of Prednisone because it better matches the body’s natural cortisol cycle and may reduce long-term side effects, but many people with Polymyalgia Rheumatica do find evening or split doses control overnight inflammation and morning stiffness much better, so yes, other patients absolutely take it at night even though doctors usually prefer morning dosing when possible.

@kjoed53
I hear this. In theory and personal practice, I agree.

Access is different for everyone (location, insurance, scheduling) and there are some true medical deserts out there. Sadly, not everyone has the ability to find someone better, so I do think it's important to empower the individual -- many have been raised to think they have to follow orders. Clearly you and I were not 😉 Lucky us!

In my case, even in a town with a lot of docs, very few are taking new clients. I consider myself very fortunate to have had an excellent rheumatologist who was able to diagnose me and help me understand what was happening. At this point I can work with a jerk to avoid having to spend time shopping for a new doc, but if that become difficult I sure will take the time!

@elizterrel
If you have issues with your rheumatologist, it sounds like you have a built in safety net with your PCP. Only my PCP is in my town. I drive 20 minutes for both my rheumatologist and hematologist/oncologist. I know that doesn't work for everyone, but it sure opens up the options.

@kjoed53 absolutely.