I’ve had a month of what I first thought was a PMR flare. When going back up to my original post-diagnosis dose of 15mg for ten days didn’t touch my buttock pain, I decided it probably wasn’t a flare after all. I’ve now been assessed by a PT who has ruled out piriformis syndrome and most other musculoskeletal causes of my pain and feels like the bilateral pain is most likely due to PMR. I am getting thigh pain in addition to the buttock pain and some fleeting neck and shoulder pain. The pain is identical to my original PMR pain, which was a different kind of pain than I had ever experienced.
My question is how to proceed from here. When 15mg didn’t work as it originally had, my doctor started me on another slow taper. I am at 12.5 and have begun a 5 week taper down to 10mgs per DL’s protocol. I am wondering if it would be advisable to go up to a higher than original dose (perhaps 20 to 25 mgs) for a week to see if that would control the pain. If it does, them maybe I could drop back down to 15 from there and start my regular DL taper. Any input on my dilemma would be appreciated.
PS This increase in PMR symptoms began during a week of extremely cold weather here in Seattle. I’ve seen references to winter weather and PMR flares but wonder what the explanation for this is?
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Donna5658
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Thanks Dorset Lady. I have an additional question about the usefulness of CRP/ESR tests during a flare. After I had a return of PMR-like bilateral gluteal pain, my doctor had me go up first to 12.5 and then to 15 to see if we could head things off. (I had previously tapered down to 10 for five weeks and was starting my 1mg taper down to 9 when the pain started back up.) Since I wasn’t responding to the 15 in terms of pain reduction, my doctor wanted me to get a new CRP and Sed Rate. I had been on the raised 15mg for five days when I had the blood test. My levels were extremely low (CRP was 1, Sed Rate was 4.) Is it possible to be having a flare if one’s markers are normal? Thanks!
Unfortunately blood markers very often lag behind the symptoms, so depending on how long after your flare started the blood were taken then yes you may still have ‘normal’ readings…. That’s what makes it difficult for patients to persuade their doctors that it is actually a flare sometimes.
Symptoms are always the key…..but some doctors seem to place more credence on the bloods…..
Thanks PMRpro. By “those steps are big too” do you mean upping from 15 to 20 or the tapering down from 15 to 12.5? Does upping to 20mg from my original 15 for a week seem reasonable?
The PT isn’t wedded to his assessment. It’s just that I’ve been religiously doing all the piriformis exercises to no avail.
After 5 days of an upped dose of 25mg, I am beginning to think you are right. My buttock pain remains unchanged and I think I am going to have to deal with this as a more localized phenomenon. Now my climb back down. Do you think 5 days on the 25mg is enough? I was successfully down to 10mg before the bilateral buttock pain seemed to be triggered by a week of inactivity due to inclement weather (read cyclone bomb) followed by perhaps a slightly overzealous return to my daily walks. Would it be okay to reduce back down to 15 immediately or do I need to do a slow taper for that too? The fluid retention from upping the dose has increased my lymphedema foot/leg swelling considerably, but I don’t want to shoot myself in the foot (boo, hiss) by going down too rapidly. Thanks for all your input!
After only 5 days you don't need a slow taper - the slow taper is to identify the right dose for YOUR PMR at the moment without overshooting and from about 10mg to allow the adrenals time to wake up which isn't a factor at higher doses. You can get back to 10mg quickly - you will noticee the change probably but it isn't risky and ordinary painkillers are likely to help.
Just noticed the "too much walking" again - almost certainly that, If 25mg hasn't made a dent in the pain after 5 days I doubt it will help even with longer.
Hello Donna - I could only manage 1mg a month from 15 to 10mg and then only 0.5mg a month. Some can handle the bigger drops and some can’t. I hope 20mg does the trick for you. 🌻
You've had great advice here but I just wanted to add that if you are planning to take a dose higher than your original starting dose ( 20 mg when you started at 15 mg ) it is important to ring your GP and inform them of this an discuss it.They are your Primary Care provider in your treatment so it's important to maintain good communication and a good relationship with them as you need to be able to keep their active support throughout your treatment.
You should not have an issue , even with lower markers , as you can explain that you have seen a Physiotherapist and after their examination they had ruled out other causes for the pain and confirmed it was bilateral and PMR. If they are reluctant you can use the advice you have been given here to explain your cause.
One reason for doing this is that they are also in charge of your prescription and if you increase your dose , and then sensibly begin a slower taper after you get the inflammation under control, you will need a repeat prescription sooner than expected by the surgery and they will query why this is and why you didn't speak to them about your choice sooner.
Contact them by phone , this discussion does not require a face to face and can be classed as urgent . Tell the receptionist that you need to speak to the GP you spoke to previously that you pain is much worse and you need to get the go ahead on a dose increase and slower taper from that emergency dose. You should get that call back within 24 hours or you can ring again.
As Pro says , there could still be other issues going on , there could even be nerve impingement or nerve pain that isn't being helped by the steroid treatment but you won't be able to establish that until you try the higher dose and see if it clears the problem , which in itself will prove that you had tapered the dose to quickly in the first place.
Continue any exercise you can manage but slow it down and do less repetitions and a gentler warm up before the exercises , don't push through if you feel too much pain or resistance , even try just doing a few of the exercise repeats a couple of times a day rather than in one big session. This can help you maintain the balance of doing helpful stretches whilst preventing delayed onset muscle soreness triggering further inflammation.
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