How does your pain come back when decreasing dosage?

When i was first diagnosed with PMR, my family Dr. prescribed Prednisone...that was November of last year. In January of 2025 i had my first appointment with a Rheumatologist and before I saw him i had bloodwork done. After 2 months on Prednisone my inflammation and pain was no better and so he put me on Dexamethasone along with Rinvoq...made progress until i started to taper off and pain and inflammation would come back..at times it seemed worse. After 2 months of Rinvoq, he switched me to methotrexate on the weekends...nasty stuff. as of today and about a year later I'm on 1/2 pill of dexamethasone as needed and a once weekly injection of Tyenne (tocilizumab-aazg). At this point i feel like the pain will always be there and depression of sorts has set in....good luck

@robmac001
Ask abt other alternatives.
Kevzara biologic has been a game changer for me and others. Tylenol for Arthritis helps as otc.

@dadcue After discovering I had Hypoglycaemia 3 months ago, I stopped taking Actemra and had good results for a few weeks but PMR / inflammatory Arthritis came back with a vengeance and after a month I started it again this time dropping the Hydroxychloroquine.At the time I was on 2 mg of Prednisone.Having started using a constant glucose monitor l became awhere the Hypoglycaemia was not abating …now I’ve dropped another mg of Prednisone it seems to be worse …I’m having a very hard time controlling it …any ideas on how to proceed ?I think all my meds which includes sulfasalazine are contributing but in another month I will be done with Prednisone. I was wondering if another biologic like me Kevzara would have different effects ?

@nancy334

It is possible that the reduction of your Prednisone dose is causing havoc with your blood glucose levels. In the same way that high doses of Prednisone increases blood glucose levels --- tapering our prednisone dose lower can decrease blood glucose levels.

Are you taking any medications to control your blood glucose levels while on Prednisone? As the prednisone dose is reduced, its effect on blood glucose diminishes, but the body's natural production of cortisol takes time to recover. If you are using insulin or other diabetes medications, their doses may need adjustment.

The cortisol problem when we taper off Prednisone isn't fully appreciated. It is very difficult to taper off Prednisone. Hypoglycemia is a recognized symptom of low cortisol levels (adrenal insufficiency).

I'm not qualified to give you any medical advice. However, I wouldn't reduce your Prednisone dose any further until you get evaluated. When Actemra allowed me to taper off Prednisone, I was ordered to stay on 3 mg of Prednisone and wait for my cortisol level to improve. I was told not to taper any lower than 3 mg.

I didn't ever develop diabetes when I took Prednisone. However my pancreas was pumping out a lot of insulin. My insulin level was very high. Nothing was ever said about a high insulin level while I took prednisone. The endocrinologist said I had steroid-induced insulin resistance which precedes the development of diabetes. All I know is how complicated hormones are and how difficult it was for me to taper off Prednisone.
https://my.clevelandclinic.org/health/diseases/24178-hyperinsulinemia
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I think you might need a referral to an endocrinologist to assist you with your hypoglycemia.

I’ve come to the same conclusions re: adrenal insufficiency probably
causing the Hypoglycaemia to manifest…but your suggestion about the
prednisone is a great idea …no one has suggested anything to do with it but
this problem has become worse with this last drop to 1 mg…I’ll go back to 2
mg and see if things improve as I won’t see a specialist for a long time
(months) and this seems to be a relatively harmless trial …thanks ! I see
my Rhuematologist in late December and will cover these points then…thanks
again

@nancy334
The cortisol issue when we try to taper off Prednisone is rarely mentioned by rheumatologists or any doctor for that matter. It came as a shock to me when an endocrinolgist told me that I shouldn't taper my Prednisone dose at all when my cortisol level was low. Until then, the only thing I was ever told was to taper off prednisone slowly. I didn't realize that I might need to completely stop my prednisone taper if my cortisol level was low.

Everyone worries about a flare when their prednisone dose gets too low. There are many other things to worry about when our prednisone dose gets lower than the physiological dose of cortisol. Just look at everything that cortisol regulates. The diagram in the link below only gives the basics about everything that a high or a low cortisol level can do.
https://my.clevelandclinic.org/health/articles/22187-cortisol
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After prednisone replaces cortisol, our body relies on us to take the correct amount of Prednisone to meet our needs. Too much Prednisone is just as bad as too little Prednisone when our adrenal function is shut down.

It is also true that too much cortisol is just as bad and too little cortisol. However, our bodies have an elaborate mechanism to regulate how much cortisol our adrenals produce. My decision about how much Prednisone I needed wasn't elaborate at all ... when it hurt more ... take more prednisone.
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I had no idea that Prednisone causes so many metabolic problems. The link above states:

"Cortisol affects your metabolism by helping regulate how your body uses glucose (sugar) for energy. The hormone does this in many ways. For example, cortisol triggers your pancreas to decrease insulin and increase glucagon. Insulin lowers blood glucose (sugar). Glucagon raises it. Cortisol also acts on other bodily tissues to manage glucose use, including your:
Adipose tissue (body fat)
Liver
Muscle
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I know some people advocate for an ultra low carbohydrate diet when we are on prednisone. Does that mean we should increase our carbohydrate intake again when we try to taper off Prednisone? In any case ... nobody should be telling anyone else to make drastic changes in their diet without consulting a doctor or a dietitian.

@dadcue Mike, what is considered a relapse? When I had my first flareup, I could barely walk. This came on fast but was fleeting. The prednisne helped within 24 hours, I was our running and lifting again. I've run, walked and lifted through my entire taper. The pain began returning when I went under 10mg. I can stand a little pain. I can't stand the mood swings, loss of hair, etc of prednisone, so I kept tapering and am down to 4.5mg in 8 months so not fast but not slow .
Now I hurt my back, no doubt lifting my granddaughter, as I babysit her. I honestly don't know what to do now. I've always had trouble with my back and have had to go on muscle relaxers and ibuprofin for a few days to kick it out. Of course now I can't take the ibuprophin. The pain is lingering and I'm wondering if it is my usual back problem, something worse, or a flareup.
This disease is so frustrating.
And of course the wait to get into doctor is maddening.

@cyndiefromnc

In my opinion, a relapse is a "significant" worsening of PMR symptoms. It isn't something that only requires us to increase our Prednisone dose by 1 or 2 milligrams . I consider it to be a flare of PMR if it only needs a small increase in our Prednisone dose. There might be bigger and smaller flares but maybe not a total relapse.

A relapse requires us to "start over" and we usually go back to whatever dose levels we needed originally to control our PMR symptoms. Otherwise a relapse happens sometime after we taper off prednisone but PMR returns for a second time.

It was way too easy for me to increase my Prednisone dose when I had any pain at all. I think we all need to "tolerate some pain." Pain has a purpose and it lets us know something is wrong. However, not all pain is caused by PMR. It is difficult to know when the pain is PMR pain or something else that causes pain. After we get diagnosed with PMR it is way too easy to lump all pain together and call it a flare of PMR or a relapse of PMR.

My best attempt at separating PMR pain from other types of pain was to call PMR --- "abnormal pain." As crazy as it sounds everything else I would call it "normal pain." I just got used to having pain but my rheumatologist didn't think my chronically elevated inflammation markers were normal when I was on 30 mg of Prednisone. That might be when PMR is "refractory."

Another problem was that I attempted to anticipate pain to justify taking more Prednisone. I continued to exercise vigorously after PMR was diagnosed. Exercise causes muscle inflammation and we all experience "sore muscles" when we aren't used to exercising. Exercise can also "aggravate PMR." If the pain persists and gets worse then eventually we might need more Prednisone.

Defining what PMR is initially is just as difficult as knowing what constitutes a flare or a relapse. Generally speaking it is all someone's guess because there isn't any criteria that defines everything well. It is very difficult to separate pain into categories of PMR pain and pain caused by something else. However, it is very easy to take more prednisone for pain and attribute it to PMR whether it is appropriate to take more Prednisone or not.

I don't think it is appropriate to take more Prednisone every time our muscles are sore. However, we get a positive reward to take Prednisone when the pain is relieved. It is like we get conditioned to take more Prednisone for any pain.

@cyndiefromnc I’m having same issue after a long drive
(6.5 hr drive down & then ; dats later 6+ hr drive back). My lower back vertebra does have some issues as I’ve aged. But it’s been feeling ok this year until the drive! I also lowered prednisone to 3.5 mg the same day as I started my trip.
So I don’t know if pain is from all that sitting (I did stop several times each way driving) OR is it the lowering of prednisone. I am so bummed.

@kare1 thank you for sharing. I too am having trouble knowing if pain is from PMR or exercise. I’m down to 4mg. Tapering 1 mg/month. I also am playing tennis 3x week and walking. This is so important to me for my health and wellbeing.
Giving up exercise is not in my plan!
PS I’m 79 and have played tennis for 50 yrs. I’ve recovered from many strains and tears over the years with physical therapy. I did 5 months of pt before the PMR was diagnosed. I’m 4 months on prednisone now. Hoping to keep on tapering and be done with this by the one year mark.