I posted last week about trying to decide if a resurgence of bilateral gluteal pain was a flare or prednisone withdrawal. After a week of significant pain that hasn’t subsided after 5 days of increased (back to original 15mg) prednisone, I am pretty sure this is a flare. I am supposed to have a virtual meeting with my doctor tomorrow and wanted to ask the group a few questions before my appointment.
1. Is it ever necessary to increase the prednisone dose to higher than the original dose that completely stopped the PMR pain? Might the reason that the same dose is now not stopping the pain be that initially I had both my own cortisol production plus the 15mg of prednisone to damp down the inflammation, whereas now my own cortisol production is suppressed, making for a lower total dose? I am reluctant to go above 15mg, but at this point the pain is bad enough for me to desire some relief. I also wonder when one has been tapering, if it is a bad idea when there has been a flare to stay at the increased dose for longer than a week? Do you lose all the benefits of the taper if you stay at the higher dose for a prolonged period of time?
2. Is there any research describing the mechanism by which the PMR inflammation actually causes the pain? This doesn’t exactly feel musculoskeletal and doesn’t respond to massage or stretching. Is the pain caused by actual tissue destruction? I am having a hard time figuring out a strategy that will let things calm down. I am also still unclear about whether PMR also involves the joints?
3. My final question is about level of activity. For the past 40 years, in order to keep my ms from flaring up, a daily walk has been crucial, unless I’m having a major exacerbation of the disease. For all the months that my PMR pain was so beautifully controlled by the 15, then 12.5 and then 10mg slow taper, I was able to take my modest 3 mile walks without any increase in pain. So my instinct is to continue to do the thing that has been so instrumental in helping with my ms and thyroid disease. But I’m beginning to realize that with PMR it is different. It seems that very little activity is too much to keep the inflammation bucket from overflowing. Can anyone advise me about the types of activities that might not be overdoing? I need to do something to keep my circulation moving, plus with gluteal pain, sitting/lying just seems to exacerbate things.
Sorry for the long post. My desperation seems to increase with my level of pain. I shudder to think how much worse things would be were it not for the kind and incredibly knowledgeable people in this group. Thanks to everyone for their helpful contributions.
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Donna5658
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In spite of reading your post and questions several times I’m afraid that my brain/ thought processes are somewhat disorganised but this may provide some answers to your second question:
See paragraph “How does Polymyalgia Rheumatica cause Joint Pain?”
Back to question 1: Needing to take higher than initial pred dose to manage your pain could indicate something going on other than PMR, eg, piriformis syndrome:
The question of exercise and how much could be answered by a physiotherapist who is knowledgable in PMR. This is something to discuss with your doctor.
There will be replies coming along from others who haven’t got cotton wool brain😏.
Thanks for your reply! It wasn’t you who was cognitively disorganized. It was that I wrote the post in a disorganized fashion. I was trying to ask too many questions and they didn’t hang together well. Thanks for your efforts to make sense of them.
Can you say a bit more about the pain? What makes it worse or better? What type of pain is it (sharp, shooting, dull, spasmodic, burning etc), does it travel? Is it worse at particular times of the day? What males toy think it’s PMR again?
Thanks for your reply. The pain is severe dull pain and is bilateral. Sitting/lying on my bum makes it worse, while it doesn’t seem to be as aggravated if I stand or walk short distances. While I am sleeping on my side it mostly subsides. It doesn’t travel. It seems about the same no matter what time of day. The reason I thought it was a PMR flare is that my gluteal muscles were very sore when my PMR was first diagnosed, along with my neck, shoulder and fronts of thigh muscles. But it is strange that it is only hitting my gluteal muscles this time around and that 15mg of prednisone doesn’t seem to be diminishing it. So maybe it’s not a flare but just an unrelated, isolated event. It is prolonged however.
I was diagnosed with tendonitis of the gluteus minimus and medius last spring. My glutes are very weak. I was set exercises by a physio. I hope that my tendons will recover if I can get off pred.
Sometimes it is harder to get a flare under control than it was when the body was steroid-naive. I don't think that the body's own production of cortisol has much to do with it though.
Above about 8-10mg of pred, your body produces less or no cortisol, once you return below that then it should start to produce cortisol again. If you then go higher, the cortisol production reduces again after a couple of weeks so you may lose the benefits of a previous taper. The longer you are up there - the more likely that is. On the other hand - you need what you need to combat the inflammation.
There is no evidence of muscle destruction. In PMR much of the inflammation is found in the attachments of muscle to muscle, bone to bone and muscle to bone, forming trigger points and generalised fascial pain - the fascia is the transparent skin enveloping muscles you will be familiar with from joints of meat and poultry, When it is inflamed it makes the muscle tender to touch. Clair Owen considers it to be the defining pathology of PMR.
I find massage helps - but longer term, in the shorter term it may feel as if it makes things worse as it releases inflammatory substances from trigger points in the soft tissues. You need an experienced physio or therapeutic massage therapist who understands PMR - and that isn't easy in many healthcare systems. Joints are involved in that PMR affects the synovium, the joint lining, and the attachments around the joints. There is no joint destruction as a result.
I did aquafit - every day Mon-Fri for nearly 5 years even though I wasn't on any pred, it was what kept me upright and relatively mobile. It stopped when I moved here, no similar gyms with a broad offer. I have now found aquafit classes for rheumatology patients who are members of the local support charity. If you have access to a local pool with a warm pool you can do exercises without being in a class.
If you have gluteal pain it sounds as if you may have piriformis syndrome - try appropriate stretches:
Thanks for your comprehensive answer to my ongoing pain issues. Your suggestions are very helpful. My husband is a retired PT who has seen quite a number of piriformis patients in his practice. He felt that I didn’t exactly fit the profile, but we will revisit it if this continues. Has your’s always been bilateral? My gluteal pain definitely is.
When you add PMR into the mix you tend to have something that could be GTPS/piriformis/other spasmed muscles/myofascial pain syndrome and which belongs where is often not clear! I get bilateral and unilateral problems but a bilateral sore bum isn't uncommon! Truly a pain in the anatomy ...
How is he on mobilisation of trigger points? I wish I had a live-in operator
He’s good He once had a patient who told him he had healing hands and I can attest to the veracity of this statement.
I had my virtual doctor’s appointment and she too is wondering if perhaps this isn’t a flare after all, as the only parts of my body that are affected are my bum muscles. My initial PMR symptoms affected my neck, shoulders, fronts of thigh muscles, as well as gluteal muscles.
What’s also puzzling to my doctor is now that I’ve gone all the way back up to 15mg, why isn’t this also taking care of the gluteal muscle pain. When I was first diagnosed and started on the prednisone, all the pain in my body, not just the PMR pain, disappeared as if by magic. This bum pain seems really stubborn, as if it is lodged there and won’t budge.
Really not uncommon - honestly. I often call it an add-on to PMR which responds far better to targeted management and your husband can probably do more than the GP can hope to. Parts of it are part of PMR I think BUT that causes the add-ons and they are harder to iron out. Take enough oral pred and it might work - but steroid shots are far more use. And complementary approaches including manual mobilisation are often far more successful.
Just to clarify, is it possible to have ongoing pain (in my case gluteal) even when on a sufficient dose of prednisone to control PMR? I actually thought that the upped (to 15 mg) dose had kicked in on day 5 as I was getting some relief. Unfortunately the next day I had a horrendous all-day food poisoning episode and was mostly lying immobile on my back (and bum) for hours. The gluteal pain kicked back in and now the fronts of my thighs hurt also, so I’m thinking maybe it is a flare after all. I have now been on 15mg for 8 days and would line to drop back to 12.5 if possible. Just don’t want to do anything too precipitously.
I think so yes - the myofascial pain stuff I have is there even with more pred so there doesn't seem much point. The quick answer is often a steroid injection locally - to get that level of pred systemically needs a very high dose with all the downsides of that, Targeted manual approaches take longer but they DO work when someone who knows what they are doing is in charge.
I endorse all that PMRpro has said. My initial and typical flare issues are in the neck, upper back, and triceps. A few years into PMR, I started to get horrible bilateral hip pain. Doc said it was arthritis, the usual copout diagnosis, and said to keep moving, walk through the pain. NOT!!
Did a bit of my own research and decided to treat for Trochanteric Bursitis. Rest, ice, anti-inflammatory meds. It worked! I occasionally have reoccurrences in one or both hips and fall back to the same treatment. I limit the amount of Ibuprofen taken as it's not recommended when on preds, and make sure to take it with food. Sometimes, a single dose of 800 mg will take care of it.
Your fortunate to have and in-house physio.
I recently found a gem of a physiotherapist who was very pleased when I gave her a copy of the paper on Musculotendinous Inflammation: The Defining Pathology of Polymyalgia Rheumatica, which PMRpro referenced. She began treating me for a number leg issues, previously blamed on PMR, but most likely caused by tight lumbar muscles and sciatica. Things are definitely improving.
Bit late to this thread but my relatively recent experience may reassure you. I had a major flare late 2020 early 2021. After much fluffing around with trying small and very brief increases I finally discovered my inflammation markers were higher than they had ever been (by then I'd been on pred for 6 years) and although I should have gone by my symptoms from the start the CPR result kind of gave me permission to take as much pred as I needed, for as long as I needed. Didn't have to go as high as my initial dose (15) but I did take 10 for a few days, tapered down fairly quickly to 5 or so, but then stuck. After a year of covid and Shingrix vaccinations, I found my second booster (Moderna after 3 Pfizer) and later Shingrix seemed to do something to help my immune system regain equilibrium and within a few months I had been able to taper successfully back to my old 2 mg, where I am now. This whole adventure took over a year, but I am back to where I was, and the taper didn't take as long as the initial one had. I needed what I needed, and when I was able to take less I was able to taper some more. Currently embarking on a tentative taper to 1.5, fingers crossed.
Taking more than you need to control a flare will not compromise your ability to taper in the future. If anything it will deal with the flare more efficiently, and you will still be able to taper as your symptoms allow. There are different reasons people flare. In the past I'd had a couple of minor episodes when my taper had been too fast or I'd gone below the dose I needed. This last event was, I am quite certain, because of an increase in disease activity and did require a bit more effort, and certainly much more time, to control. No amount of wishing it were otherwise could make any difference to that!
Per usual your reply is eloquent and very helpful. I am supposed to get my CRP and sed rate checked next week, so that should give me more information. The only problem is that on Wednesday I fell victim to a truly horrendous food poisoning episode from which I am mostly recovered. I am still, however, pretty wrung out and am uncertain whether this will affect my inflammation markers. There is certainly nothing linear about the PMR experience. I am thankful on a daily basis for this support group and for the kind, knowledgeable people like you who take the time to respond.
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He once had a patient who told him he had healing hands and I can attest to the veracity of this statement.
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