Tapering off of Prednisone

My question is: what level of pain is considered acceptable to start tapering prednisone? Should all pain be gone before beginning to taper?

I was (tentatively) diagnosed with PMR on Feb 3, 2023. I am on 20 mg/day of prednisone. I still experience significant pain, especially in the mornings.

The pain before I went on prednisone was excruciating and 24/7. The thought of "tapering" and having to face that level of pain is terrifying. I'm trying to understand what other's experience is. Thanks.

Hi @redboat, I think the answer to your question may be different depending on who you ask. I I think that's because each of us have different pain tolerances on a scale of 0 to 10, my 2 level may be a 0 for some and maybe 3 or 4 for others. I also started at 20 mg/day prednisone for both my occurrences of PMR but others have started at 15, 30, 40 or something else depending on their symptoms and pain.

You mentioned still experiencing significant pain in the morning. I assume that is before you take the prednisone dose for the day. I always had a little pain in the mornings after work but I would classify it more like an ache on a scale of 1 or 2 max and it usually went away when I got up and started moving around some and was all gone shortly after my morning dose of prednisone.

Is any of the pain you experience in the jaw, scalp or temple areas? These types of pain can indicate a more serious condition of GCA which can accompany PMR and is normally treated with a higher dose of prednisone.

Thanks for your reply. My pain is not GCA related, it is in my hips, shoulders, arms.

I take prednisone around 8:30 am. My pains are there all day, but they are less in the evening. It is now 8:40 pm, and I am experiencing quite noticeable pain in my upper legs, hips, arms, and shoulders.

The question I really was hoping someone could answer is: Should all pain be gone before beginning to taper? As I read between the lines of your comments, it seems the answer is "no".

It seems to me that you are tapering too fast. Slow it down and you might feel much better.

Hi, I'm down to 10 mg since starting 20mg in December. It's like 12hours of pain and then 12 hours of no pain. Like you, at first it was constant. Next week I'll try to go down to 5mg. I'll let you know.

There may be ‘standard’ or ‘typical’ cases of PMR and tapering but mine does not seem such a case. My tale may be of interest however as a variation. In brief, PMR began in October 2021 with the usual girdle joint pains in shoulders and hips. The pain was severe but not unbearable. Inflammatory markers were elevated but not extreme. After diagnosis I began daily 15mg Prednisolone in November/December and I have continued on monthly tapering doses until now, at the end of February 2023, when I’m on 1mg daily. I expect to stop at the end of March. Over the entire course of treatment I have suffered the same level of pain on waking from about 2am. It doesn’t seem much different now than it was in the beginning. It feels like fiery wires running from my joints. Always the same, except that it now extends down my forearms to my wrists and hands and to a lesser level, legs and knees. No soreness, tenderness or swelling of joints. (This is not RA.) Inflammatory markers have long been normal. The only thing that helps is rigorous exercise. Road running and gymnasium, shoulder and arm exercises in particular. It took me some time to realise, after the initial PMR diagnosis, that exercise did alleviate the pain: it seemed impossible to imagine as I levered myself out of bed and shuffled off to the kitchen for my 4am Pred dose that I would ever move freely again. And yet, once out on the road and moving the pain was in abeyance. So also in the Gymnasium. The It returns - forearms particularly - in the afternoons when I sit down to read. I take slow release Panadol occasionally for relief. The other distressing effect is exhaustion - which may be an effect of loss of sleep from early morning pain.
Now, when I’m not far off a completed taper I wonder whether Pred did me any good at all. I feel that it has been a year of learning to live with what is now a familiar set of pains, severe in the early hours of the morning, but alleviated once I begin activities. My levels of physical performance are lower than they were before PMR, but not by that much. And I am of course a year older and at 83 expect continuing natural decline.
I’m sure there are better journeys with PMR and Prednisolone than mine. But I do feel that I have been moderately lucky and moderately successful in dealing with this distressing affliction. In my perhaps atypical case, it’s just pain management.

Hi I wonder if you were on an adequate dose to start with if you still had significant pain. Perhaps see rheumatologist for guidance? I started prednisone treatment for PMR in October 2022 - 25 mg daily & luckily that worked for me & eliminated most of the pain and let me return to normal life. After a couple of weeks I reduced the dose to 22 mg daily and then a couple of weeks later 20 then 17.5 etc. When the dose was down to less than 10 mg the pain returned and I was advised to go back to 10 mg for a couple of weeks and then try tapering again. It took a while but am now only having 7.5 mg daily and hope to continue tapering off the Prednisone. Will see doctor again soon to check that this prolonged use of prednisone is ok. Some people do have to stay on it longer than others.

I had chronic migraine/headache after covid - started abt the same time as PMR. My neurologist put me on Apo candesartan- a blood pressure tablet that in some people prevents headaches /migraines. I don’t have high blood pressure - but the drug ‘relaxes’ certain blood vessels around the head & can help migraines. It was miraculous. Have not had a headache since starting on that drug. V well tolerated drug with few side effects/risks. Maybe worth a try. Persistent headache is so debilitating. I really feel for you.

Thanks for this detailed and thoughtful reply. It is very, very helpful to understand and compare with my situation.

Unfortunately, my inflammation markers were extraordinarily elevated. Specifically, my CRP was 347 mg/L before beginning prednisone. (Common CRP levels for untreated PMR are 40-60 mg/L. Levels above 100 mg/L are unusual. Anything above 200 mg/L is extremely rare.)

I had tremendous unbearable 24/7 pain for 3 weeks until diagnosed and treated.

20 mg of daily prednisone, brought my CRP down to 30 mg/L, and the pain became strong but bearable.

Given the side effects of prednisone, I want to limit my exposure. But balancing this against the pain I've experienced is also important, so the topic of tapering is of great interest to me.

Thanks again for sharing your experience.

Good comments, thank you.

I'm in regular contact with my rheumatologist and PCP, and have suggested moving to 25 mg of prednisone/day. However, I was only diagnosed on Feb 3, 2023, so I think my rheumatologist wanted to wait for a few weeks to see how I responded to the 20 mg/day I am taking now.

Well, a few weeks have passed, and I've just just had my 6th blood draw. The results are coming in. It appears my white blood cells and inflammation markers stabilized quickly after starting the 20 mg/day prednisone a few weeks ago, but have not changed further since then. So they are still quite high, but no longer extraordinarily so.