I think like many before me, I have reached a stage in the PMR journey were I am completely flummoxed. My PMR flared after tapering from 11 mg to 10 and then too quickly to 9.5. CRP went from normal back up to 28, along with considerable pain. Thanks to the advice I received here, I got the flare under control by going to 16 mg, and stayed there for 2 and a bit weeks while everything calmed down. A blood test a week mid-way in the protocol regime showed CRP down to 8.
I maintained the 16 mg for another 10 days then began to drop back. First step down was to 13 mg, but within 12 - 24 hours that proved disastrous as pain across the shoulders and hips started up again. The next day I went to 16 mg again and was due the next blood test the 2 days later which showed normal - the GP has been monitoring the flare closely. Still in pain (despite the low CRP) I had a physical examination by a locum on Christmas eve. That ruled out any other obvious things going wrong like slipped disc, vertebrae fracture etc. and reconfirmed that the pain was PMR. It was suggested I raise the dose again up to 18 mg then 20 mg.
After 4 days of the higher dose, the pain has largely abated from the neck and shoulders, but the lower back and girdle around hips remains the same or possibly worse. The pain improves very slowly during the day and is calmer by the evening but it's back again by morning and reaches a peak around 11.00 to 12.00.
It seems very much PMR pattern but even this much higher dose (compared to pre-flare) seems very slow to act. Has anyone experienced a similar pattern?
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AmbientB
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I think I’d be rather concerned if I wasn’t getting significant relief at 20mg…especially if some pain was getting worse rather than better..so maybe push for further investigations after the holiday.,
Does the increase/decrease in pain correlate to any particular activity? What time do you take your Pred?
Thanks for answering. Yes, I have an appt on the 2nd with my regular GP. I take the prednisolone between 5.00 and 6.00 am. No changes or increases in any activity.
Morning all I am having similar flare up whilst trying to reduce predand was doing really well, or so I thought, had a regular blood test where it was discovered my inflammation level hsd risen only ever so slightly, but I was starting with the stiffness and some pain I was down to 20mg pred.Was reducing very slowly like 1.25mg every 3 weeks, anyway in upped pred to 25mg, but didnt help much as then my shoulders and hips along with pain, so I increased to 27.5mg but then GCA showed signs, I have been having headaches over the past few weeks but didnt think it was anything to worry about, but very quickly my jaw was painful tender temples and felt very unwell, so went up to 40mg that afternoon after speaking to my GP.
I didnt want to go to 60mg where I was months ago🤦🏼 it has seemed to help the pain of GCA but PMR pain very present and feeling very dizzy. Had a bad night, really so over all this, just when I thought I was doing so well with the reduction😪
I was reducing 1.25 and spacing it at 3 weeks in-between.
I have only been on 40mg since Monday before Christmas......shall I just persevere on that dose? Any comments would be more than welcome thank you.
I feel for you. I was having similar problems in 2023 and think that I have now gotten rid of most of the GCA type symptoms. Although PMR remains a significant battle. I wonder if it would be better if you put up what you have written as a separate post. I don't know for certain as I am still learning how best top use the forum myself.
Thank you so much DorsetLady that was my initial dilemma...so I will stay on 40mg....just feel so awful on Pred but know, by now, have to do wgat we gave to do 🤦🏼I am seeing the bew rheumatologist in late Feb, the kast one has basically just abandoned me because due to toxicity of MTX, I wont take it even tho I am quite orepared to try something else....anyway that his conscience, but think I will try get an appointment with my GP. xx
If PMR pain is present that badly at 40mg pred, then that is not "PMR" but as a symptom of GCA. I really think you need to seek medical advice since you say you feel very unwell.
40mg is regarded as a starting dose for straighforward GCA - you say you have jaw pain and that is taken as a red flag symptom which requires a higher dose, 60mg is typical I'm afraid. If you still feel unwell after 5 days of 40mg, you need another opinion from a medic.
Thank you PMRpro was thinking similar as when I started with PMR 20 mg was sufficient to take the pain away within 2 days....i will attempt to see my GP this week, just to be on the safe side. X
Thank you PMRpro for that sound advice......i have been taking it easy all day, but there is no worsening of my vision, no jaw pain my temples still tender, but will see my GP just to make sure, but definitely will go if things change, the risks are too unsettling not to. I always appreciate the sound advice given on this forum, very comforting xx
I suspect that back pain is not directly PMR - I have similar problems, but it is myofascial pain syndrome with trigger points which can be felt as localised, hardened areas of inflamed muscle fibres which irritate nearby nerves causing referred pain and the fascia of the muscle (the clear skin you will have seen around joints of meat and poultry) is also inflamed resulting in more generalised muscle pain.
This all makes your back muscles very sensitive - and the slightest tweak can make them spasm very painfully. Had you lifted something or slipped and had to recover your balance shortly before? It is often a totally innocent action that can result in this.
Around 5.00 to 6.00 am for the pred depending on when I first wake in the morning. Yes, there are certainly a number of tender firm lumps either side of the backbone. I may have done some lifting but not extreme. Thanks.
That seems to be taking a very long time to work - have you tried taking it before bed? 2-3am is the ideal time for optimum control of morning symptoms but some can't cope with waking - but taking it before bed helps some and doesn't keep them awake any worse than pred does anyway. Once you have got things under control you may be able to adjust the timing again.
I just did a bit of reading on this syndrome and it does all seem to make sense. I run a small business from home that often involves repetitive movements over a work bench eg soldering electronics. I did quite a bit of this in the lead up to Christmas. And obviously it hasn’t helped that it coincided with a flare. Thank you.
Yes, I go through this, too. They never can find any other reason, and I do respond to the pred almost miraculously within 5 days, sometimes within hours, but then it wears off..but overall it goes away within a week, I'd say.
I too am back on 21 mg (was up to 23 mg again just a week ago)..lowest I have gotten is 13 mg. My ESR is still kind of high considering the pred I am on and have been on. I worry less about this maddening pattern now, it is just how my PMR is..stinks, though.
Try not to worry, all you can do is what you are doing and did.
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