Hi All, I was finally diagnosed a week ago with PMR after three months of visiting different specialists. I just have terrible joint pain in shoulders, pelvis and knees. I don't have the exhaustion thing. I started on 15 mgs of predisilone three days ago and the pain is worse than ever. I'm stiffer in the mornings . How long do the meds take to kick in? Or is it possible that maybe the diagnosis isn't correct.?? Should I be feeling better by now??
Hi, I was diagnosed at the beginning of June this year. I started on 15mgs but it took me a week to get relief and I had to up the dose to 25 mgs. I reduced to 20 mgs pretty quickly after that. Since then I have used the slow method of tapering and am on my way to 12.5mgs. The pain around the shoulders at at the base of my neck is still present, although much reduced and I have had an X-ray to check whether there is another cause. Pred can mask symptoms of other problems not directly related to polymyalgia. Hope this helps
Tks Celia, So maybe it just needs more time since it's a low dose. I'm supposed to take 15 mgs for two weeks then drop to 12.5 for another 2 weeks until I get to 10 where I stick until March. To be honest I thought the relief would be quicker I was really pinning my hopes on going back to work after the christmas holidays but that seems to have gone out the window.
But I don't understand why I feel more pain now than before.
I think I would prefer any other diagnosis. Even a cancerous tumour that could be removed and then I could get my life back.......Yeah Just a little cancerous tumour ........................
Do you think marijuana would help the pain? I'm tempted to try.
I was exactly as you, thinking that maybe I don't have PMR. Also started at 15mg, which is on the low side of the starting range. After about a week or a bit longer, finally pred had "cleared" the backlog and pain subsided.
The rule is that you should be at least 4 weeks on the starting dose ( not two) and then each step above 10mg can be as short as 4 weeks. Below 10 mg you need to follow "DSNS" (slow taper method) to avoid problems. Keep in mind that average length of PMR is 4-6 years. What dose you need is determined by underlying PMR activity. Pred only manages symptoms, and does not cure anything. If you reduce more then you should, your symptoms will return and you will have to go up in dose to clear the inflammation.
I would be tempted to up the dose to 20mgs before starting to taper as Nick outlines in his reply. It doesn’t sound as if the dose is enough to control your symptoms at the moment.
It’s early days yet! Some patients find pred takes a time to kick in, others feel amazingly better after just a few hours. You will learn that we are all different.
There is always someone on here who will listen/advise and try to help you through the next few days/weeks/months.
Good luck and welcome to the club that no-one wanted to join.💐💐
Hi Jennifer, I am so sorry about your pain. PMR is difficult to diagnose, it is really a matter of discounting everything else first, although your symptoms do sound very like PMR. Some people do find that 15mg is just not enough to block the initial inflammation, it can depend on your build even. They say you should try up to 25mg. Over that it may be that the pred is sorting out something else and so can be misdiagnosed.
Did you ever ever try other pain killers over the last three months? If so did they work? PMR tends to not really be helped very well by anything else except pred.
I agree with the others that you may need a higher dose (up to 25 mg is sometimes needed) or simply more time. Are you treating yourself like a poorly bunny? You need to get some rest even if you aren't fatigued. I didn't feel fatigue either when I was first diagnosed, and was quite active once the pain went away (took a few days to go completely although I felt a little better quite quickly). But I was also retired which meant I just did what I wanted when I wanted. It was later that I learned it was wise to take it easy. I know that people who are still working or have other commitments often have more trouble getting the pain under control.
If all you have is joint pain I personally would be doubtul about a diagnosis of PMR. And if what you have is PMR you would expect at least some improvement in 3 days - not an increase of stiffness. Though as I have already said elsewhere - 15mg is not a high dose, some require 20 or even 25mg to get a result.
However - I'm not impressed by your doctor's instructions. 4 to 6 weeks at 15mg is more normal and speeding down to 10mg will only work for some. If the pain hasn't improved before you are due to reduce - don't do so and ask for a rethink in one way or another.
Hi their, so you have hound the polymyalgia club haha , it took a good 10 days for my prednisalone to start working to take away the very very painful hips , shoulders , arms , some one will be along to help you more on this site , hope your steroids starts to help you soon xxx
Hi Again, yes I tried all sorts of painkillers and anti-inflammatories but nothing seemed to work very much and really upset your stomach so I tend to stick to paracetamol 1 gram. I think my rheumatologist is very cautious about the dosage and prefers to start on low doses but since I'm new to this I don't know what the normal is. It's now day 4 and I'm still the same now change in stiffness or pain. I'll just keep going. Time to waddle out with the dogs before the rain comes again
Hi, Anhaga well I'm still on holidays for Christmas so not doing too much. The house is a wreck cause I can't even hoover but there are priorities these days like getting dressed. Anyway, I'll stick it out and see if anything changes over the next few days. Tks for your expert opinion. It's always better to hear it from someone who knows
Karen.........Ok I'll stick it out then. Cheers for the info. I was beginning to think maybe I had something different
Are you going to up your dosage or are you nervous about the idea?
I am 68 years-old and was diagnosed with PMR almost 3 months ago. In the first three weeks I tried 11, 15, 17 and 25 mg prednisolone but soon ended up on 24 mg, split 17/7 (8 am and pm). Splitting the dose gave me a full 24 hours relief instead of just 9 hours, beginning in the late afternoon. If the dose is only slightly low, inflammation seems to build slowly, day by day!
Two months later, I'm on a 12/6 split and I have been reducing either the morning or evening dose depending on the timing of residual PMR symptoms. I have tapered at almost 1 mg a week. For the last 6 weeks, I have been more or less symptom free.
I have full control of my tapering and at the first hint of PMR returning - usually in the outer shoulders - I instantly up the dose by 1 mg (weighing broken 25 mg tablets myself). I would dread following some tapering regime imposed by a GP.
Initially, an inadequate dose of prednisolone gave some relief in just 12 hours but, even on an adequate dose of 24 mg, inflammation took a month to recede. I wonder what would happen on a higher dose.
I don't have exhaustion either but my head sometimes felt strange in the first month or so. I have never had knee pain.
Hi all I was diagnosed with pmr by my GP nearly 3 weeks ago. I took early retirement in October with plans to landscape my new garden etc.very active, gym 4 days a week swimming etc. I’d notice some stiffness in my legs in mid September esp. getting in out of car but put this down to too much exercise! One week after I retired I noticed aches in both arms again put this down to exercise. But 2 weeks after that I was struggling to get out of a chair, couldn’t turn in bed as shoulders hurt and couldn’t lift duvet to get out of bed. Mid Nov went to see GP she ordered some blood tests but at that stage also thought it might be an injury, but she wrote “exclude pmr” on the test form, first time I’d heard of it. I was told all bloods fine a week later but the stiffness and aches got worse so I went back to see GP in mid December. I asked her about pmr she said it could be but was concerned all bloods except CRP were fine (noone had mentioned raised CRP before) She gave painkillers then at 830 that Evening she rang me to say she’d been reading up on the condition and the raised CRP despite my age (I too was told too young at 56) with all the symptoms suggest pmr and she wanted to try prednisolone. I started 15mg on 18 dec I was slightly disappointed not to experience the miracle you read about but within 5 days I had improved by at least 70% with no stiffness and only mild muscle pain if I moved at night. I took neproxen at night until Christmas Day I don’t take it now so that may have helped with aches. On most days I have vastly improved symptoms with only mild aches, most nights I sleep ok and no stiffness in morning though arms do ache sometimes but some days are better than others. . On some days there are some aches in the morning but a couple of hours after taking the Pred they’ve gone. If I do too much I seem to pay for it the next day yesterday I disconnected the Xmas lights which meant twisting under a hedge to reach the plug. This morning my rt shoulder was painfully stiff, left less so and legs mildly ached. Took Pred at 7am and By 12 today pain free again. Seeing GP again on Monday I personally don’t think the 15mg is lasting long enough and I know I need to pace myself and be patient which I do find a challenge. From my complete newbie experience I think the worse thing in all the guidance is raising the expectation of a near miracle in a matter of days on prednisone, worried me at first too.
Hi Derek. I'm glad your GP has been reading up on PMR. That's a very good sign and hopefully she'll give you good support on this journey none of us planned to take. You're right about needing to pace yourself, and really for the first little while, as the initial inflammation is being cleared out, you should be treating yourself more gently than perhaps you are used to. Pretend you have a bad case of flu and act accordingly for a week or two, except for making sure you get some non-strenuous exercise!
The guidelines don't suggest a miracle - it is patients who say they have had it. I did. I took 15mg of pred standing in the pharmacy when I picked it up at 10,15am, Just before 4pm I got up from the computer and walked downstairs, made a cup of tea and carried it back upstairs. Then I realised what I had done - for the first time for years!
Guidelines suggest looking for a 70% global improvement in symptoms within a week which return in a similar timeframe on stopping a trial dose of 15mg pred. Other things tend to take longer or improve less.
Read the "Bristol paper" - the link is here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Up to 20% of patients have neither raised ESR or CRP - and the age range is "over 50". I hope she remembers the lessons she swotted up on!
Hi Derek
you are really new to PMR and prednisone.......but if you find that you continue to have morning aches you might want to consider splitting your dose. Lots has been written about that on this forum, and you have to experiment to see what works for YOU. I had improvement doing that when I was on higher doses for my PMR. As I recall, a place to start is 2/3 in morning and 1/3 at night.
Once i I got below 4 mgs I started taking all my pred in the morning because I didn’t want to suppress my adrenals that need to ramp up again. At higher doses (probably above 7-8 mgs) this isn’t important.