diagnosed with pmr early January this year, started on 15mg Pred about 4 weeks ago, which has had zero effect, recent bloods showing inflamation same as pre pred. I have always been extremely active, my job is fairly physical (painter/decorator) I am doing my best to take it easy but not good at this, the pain is worse in shoulders than hips and by mid morning has almost gone only to return with vengence in the early morning. having xrays next week to see if anything else maybe going on.
Anyone else not respond to pred?
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Gymrat62
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Hello, the range for PMR starting dose is 12.5mg to 25mg. 15mg is at the lower end. It is quite possible you need to be on a higher dose. It may be your bloods are still showing inflammation because the inflammatory activity is too high to be touched by your dose, plus there can be a lag in both directions between symptoms and the numbers.
There are lots of us who were very active before this or GCA/PMR and had to curtail or jobs or activities. We do understand how hard it is! It doesn’t help that Pred can give you false get up and go. Rest you must because both PMR (if you’ve got it) and Pred predispose you to injury.
If Pred is not working at all, then either you don’t have PMR, your dose is not enough to get the condition under control, or [even though you say you have moderated your activities] you haven’t done that sufficiently.
If your shoulders are more affected than hips, I think I might suggest GCA to doctor whilst other things are being considered.
Do you have an headaches, neck pain? Have you tried painkillers?
Thank you for your reply, I think my my shoulders are worse as its almost impossible to rest them in my job. No headaches or neck pain, interestingly on my bad days a couple of ibuprofen work wonders, but not something I want to take daily. I consider myself lucky as by 10 am on days where I'm not sitting around I'm pretty much pain free, gentle movement and stretching seems to be the key Thanks again.
you mustn’t take ibuprofen if you’re on steroids. Your doctor should’ve told you this. They interact with each other and can cause serious stomach upsets leading to ulcers etc. Ibuprofen does help but it can’t be taken on a regular basis. Sounds to me like you need a higher dose of prednisolone. I would go back and see your doctor immediately.
I wouldn't say you haven't responded to pred - I would say you are not on an adequate dose, particularly since you have had to continue working. Our experience is that people who continue to work need more pred and 15mg is the lower end of the starting dose range as Snazzy has explained.
And actually - you HAVE responded to pred, it clears the symptoms for a time. The antiinflammatory effect of pred lasts from 12 to 36 hours - if you are at the bottom end of that range, the symptoms will return long before the next daily dose is due. If you are on too low a dose - as evidenced by the persistence of your inflammatory markers - AND you are a "short" responder, then it will look just as you describe. You need to be allowed to try a higher dose - up to 25mg and exceptionally 30mg is mentioned by the 2015 Recommendations for the management of PMR and the more recent Treat to Target paper supports that approach. Pred cures nothing - it is a management strategy and the early morning return of full-on pain is because that is when the daily morning top-up of the inflammatory substances happens at about 4-4,30am. The sooner after that you can take your pred, the less it has to do and the sooner you will have relief. Ideal is taking prednisolone at about 3am - ready and waiting to neuralise the inflammation when it starts so it has less to do and achieves more.
x-rays will only rule out things - ultrasound of your shoulders should be requested, Your shoulders are probably protesting at the actions your job involves. And since you call yourself Gymrat - is that off the menu for the moment?
The other point that has been mentioned is the possibility that this isn't "just" PMR but there is some large vessel involvement or even GCA which tends to be more resistent to low doses of pred.
Oh, a PS that I forgot - if your symptoms return inside 24 hours and the next dose, one way of helping that is to split the dose. But first of all you need to be on a higher dose that does the best possible as a single dose. Sometimes that is enough without splitting.
Thank very much, that all makes a hell of a lot of sense and gives me lots to discuss with the doctor in a couple of weeks. BTW no weighted workouts at all just light yoga and cardio, which seem very beneficial
Yes, I did Pilates and Iyehgha yoga in the 5 years I had PMR without any pred - only ever after an aquafit session in a warm pool or at least some time in the sauna or steam room. Without the warmth I was stuck! But don't try to do anything that feels hard or wrong - get advice from the instructor who should be able to adapt a lot for you. The earlier in the day I could do that, the better a day I had physically afterwards. I said somewhere a couple of days ago - I used all the blocks in the room!!!
Quite often an initial dose of 15mg is not enough for men, but fine for women. Presumably something to do with the fact men are bigger! Your symptoms do sound like PMR.
Even I had to go up to 30 once to get one particlar flare under control, but then I am a big-boned gal 😆. there have been papers writtten about dosing according to weight, they do it on the continent
My GP originally started me on 20mg of Pred, but that had almost no effect. He then raised it to 30mg which worked brilliantly, so you might need a higher dose.
Sounds to me you're not on a high enough dose to start with. When I was first diagnosed, although my symptoms was so bad I couldn't even turn over in bed my GP put me on 30mg of pred and I felt back to my normal self in a matter of hours, all the pain and stiffness disappeared completely. Of cause I couldn't stay on this dose for long and tapered quite quickly off this high dose and then tapered down gradually when I had tapered down to the lower doses.
I agree with PMR pro in regard to considering splitting your dose it may be worth trying it by using 10mg after an early breakfast so by 7.30 am and then 5 mg at say 9 pm with a little food and a drink before bed If it works great and if not you may need a higher daily dose and then take in one go or by splitting that too.
If you hit the right dose you will know as your pain goes usually within hours.bFinding the minimum dose that happens is important as the lower dose your on can make tapering easier with minimal side effects
It took 25 mg to 30 mg for me, I took 35 mg during a 6 day trip. My blood markers went UP after month on 30 mg..now happily down to 17.5 mg and going to attempt 15 mg soon. Obviously it could be something else, but could be the dose.
Another one here who started on 15mg and it did absolutely nothing. As soon as I was prescribed 30mg, it was like a lightbulb moment and I could move again.
I also started with 30 mg, reduced by 5 mg a day for 6 days. This was when seeing my orthopedic doctor (PA) about hip and lower back pain that I thought was coming from a back problem I had for some time. My shoulders and upper arms were very painful also. The PA had no clue what was causing the shoulder pain, as X-ray didn’t show a problem. She just put me on prednisone to relieve the pain until I could see my doctor. I took the 30 mg of prednisone at about 2 pm, and by bedtime that night my pain was gone! A miracle! As the dose was reduced, my pain started coming back. So, what I’m reading here from others is, you need a higher dose in the beginning to knock out the pain. And then make your own adjustments, according to your pain.
"Zero effect" after 4 weeks on 15mg/dy is a really important clue. It not only suggests that your problem is not PMR, it pretty much rules out any autoimmune condition, of which there are many! Most other autoimmune conditions require more than 15mg to ensure a full response, but to have "zero effect" at all after 4 weeks on 15mg/dy strongly suggests a higher dose won't work either.
It must be remembered that: a) the commonest cause of inflammation is infection with pathogens (bacteria, viruses, fungi, or parasites) not autoimmune conditions; and b) steroids suppress the immune system, so they can sometimes make things worse if used unnecessarily.
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