I ve been suffering significant issues with my shoulder and extreme pain in my upper arm . I have arthritis in my feet and some joints but the shoulders are not to badly affected . The range of movement in the affected arm is limited because of pain being treat as frozen shoulder but I have my doubts . CPR was normal can you have blood tests that are normal . I was taking azathioprine for a auto immune situation undiagnosed but stamped this because of covid . I am worse at night and in the morning things do ease off in the day but I wonder if that’s because I guard the painful areas , Dr said I can’t have the injection because of covid but I wondered if I should ask for prednisolone to see if it helps Thoughts please thanks for reading this
Diagnosis : I ve been suffering significant issues... - PMRGCAuk
Diagnosis
WHY can't you have the injection because of Covid-19? As far as I know a single injection won't affect your immune system.
It is perfectly possible to have PMR with blood tests that "remain in normal range" - it happens in up to 20% of cases. However - if it is only one shoulder then it is less likely that it is PMR. You say it is worse at night - what sort of time? And does the pain/stiffness improve once you are up and moving around?
A orthopaedic specialist diagnosed a frozen shoulder yesterday and said he couldn’t give a steroid injection because of covid must be the hospitals rules . But I really don’t think it’s a frozen shoulder
Sorry early hours from four and it improves in the day
Sounds a bit PMR-ish - it is often diagnosed as frozen shoulder in the early stages. But an orthopod might not be the best to recognise PMR - but you can't really argue with him! Would have been interesting to see what it did for you - it isn't unusual for a steroid injection to be given for a joint problem and the patient realises a load of other symptoms have disappeared too resulting in a PMR diagnosis.
Or more worrying- GCA - if no hip, knee involvement.
I ve had issues for some time but this pain in the upper arm is awful sharp and excruciating I think I ve developed Tourette because when it strikes the language is a bit blue ! It’s definitely worse in the morning could cry with the issue of it my feet aren’t good and if I walk a bit I get pain in my hips was told possibly Bursitis thanks for replying ...there isn’t a definitive test is there
No, afraid not. That is what they need more than a "better" treatment. But the PMR Tourettes is a common effect! I have it too. Hip bursitis is also a thing in PMR.
How do you think I should approach my GP I haven’t found them helpful because CRP is normal etc etc but I ve had issues off and on for ages really the shoulder and arm pain is newish a few weeks ....
I think it would be well within reason to ask for a trial of prednisone at the lowish dose of 15 mg. In my case I was given this and within a couple of days all my pains had vanished. The standard is to have at least 70% of pain relieved within a week, although some people do need a bit longer and a bit more - and others experience magic relief within hours! No wonder doctors are puzzled by PMR. We are all different.
However, be careful. if you do experience excellent relief try not to have a break in the treatment but keep on taking the 15 mg (or whatever you've settled on, shouldn't be more than 25 or so, more will mask too many other conditions). A break in the treatment which allows the symptoms to recur can possibly cause it to be much harder to get those symptoms dampened down again. Just ask PMRpro! You'd take the 15 mg for about a month or six weeks, with continued good relief of symptoms, before even considering a taper. Once the symptoms are as good as they are going to get the taper is done very slowly and in small steps to find a maintenance dose at the lowest level which still keeps the symptoms at bay. Things that aren't PMR (osteoarthritis, the add-ons like bursitis) will recur and can be treated separately through some physio or other appropriate means.
There is a myth prevalent in medical circles that PMR lasts a couple of years. In fact the reality is it's nearly always longer, often significantly so, but with very low dosage the side effects of pred are minimal so not to be feared. In my case (and I repeat we are all different) I was at 3 mg by the end of the first year. But I've spent most of the susequent four years bouncing around doses of 2-2.5, even having a brief flirtation with zero. I would say by the time I was at 2.5 there were no side effects at all, except maybe a tendency to bruise easily. I'm taking 1 mg now, and happy here.
Good luck - let us know how you make out!
Hi,interesting post a lot i can relate to in it. Ive have just gone down from 15mgs to 12.5 after 5 weeks certain aches and pains popping up , but only slightly ! How long do you think , i should stay on this new dose ? Is it the same amount of time ? Bit in the dark about it . Thanks .
At least a month, some experts say 6 weeks at these early doses. And one group keeps patients on 10mg for a year - and that reduces their flare rate from 3 in 5 to 1 in 5. Which I think speaks for itself. Personally I think you can reduce from 10mg sooner but only if you do so slowly and being very aware of any returning niggles.
Thanks, my first time with pred after the first 6 weeks my Dr pretty much left me to it ! Was not good as I really didn't have a clue ! To say it was a roller coaster is an understatement. I'm more clued up now after reach and this site, I think it's amazing! Will give your suggestion a go and take it from there .Many thanks .Viv x
Here's the link to the Tapering plans post HeronNS mentioned:
If you are feeling some pred withdrawal that should go away over the next few days. Follow PMRpro's advice re that. I do suggest that when you are ready to taper again you only taper by 1 mg from now on. You will need 1 mg tablets to do this easily but you can cut a 2.5 mg tablet in half to get a close approximation (provided they aren't a coated type). I also suggest you choose one of the slow taper plans patients have developed. There is a pinned post on this page, you'll probably have to scroll down the pinned posts to find it. This enables many of us to continue tapering very slowly without having to stay at a higher dose for a long time. As I had a number of rather concerning hidden* side effects it was important for me to safely get to a low dose.
*These effects were increased blood sugar, increased eye pressure and possibly some bone thinning although as I'd had no baseline DXA scan I'm not sure about the last.
Hi and thanks for this .Went for an eye test yesterday and was shocked to find that since my last visit i have the start of a cataract and risen eye pressure in both eyes !! was shocked to say the least. Perfectly normal before my first bout of pred ! Hes referred me to an eye Dr. Not all all what is was expecting , could not believe how much my eyes have altered ! Anyone in the same boat ? Best wishes VIv x
How long is it since the last test? Raised pressures are common when on pred - which is why regular checks are needed. The cataract can be slowed by always wearing sunglasses or reactolites/transitions lenses if you wear glasses. Often cataracts are just "brought forward" - i.e. you would have developed them sooner or later anyway but the pred speeds it up. One type of cataract is caused by the pred - slightly different thing though.
My eye pressure actually went to a level where some people are given drops. My ophalmologist didn't prescribe them, but I had to see him fairly frequently. At the time I was already tapering pred (maybe the pressure had been even higher, I'll never know) and on the second visit the number was already going down. It continued to go down steadly as my pred dose did, so that was good. It's normal now and has been for a while but I'm still monitored a bit more often than if I weren't on pred. Last visit he told me I had the beginnings of cataracts, but as I've been on pred for five years I'm going to assume that this is something which would have happened sooner or later anyway. I'm 73 so they are not coming on too early! Always wear sunglasses and my regular glasses have come with all the bells and whistles for decades, including UV coating. At least most of the side effects can be dealt with. It really becomes nearly a full time job for a while, balancing ailment, medication, side effects!
Don't really know - I kept going to the GP because I actually had pretty textbook PMR symptoms though I didn't know that at the time. My bloods were normal so there couldn't be anything wrong he said. That went on for 5 years!!!! The first thing is to undertake a tour of all available GPs and try pester power. I'd have done a lot better had I tried that in the first place. But the relevant doctor was part time and on and off maternity leave - getting an appointment with her was hopeless.
I have frozen shoulder too - no injection but improving with exercises and heat pad and small cushion under arm at night - on online talk Dr D (Southend) said no injection in COVID times as lowers immune system I think
Update , spoke with Dr lost the plot in truth I am a nurse manager and quite frankly this has floored me .
So much for so long ....shoulders ,neck ,arm upper ,, feet , hips and elevated ALP which I ve discovered is often found in those with undiagnosed PMR . Anyway Dr feels there is enough to warrant a trial of prednisolone 15 mg started last night so watch this space and thanks all for the support it’s made much more difficult when CRP isn’t off but my flare for want of a better word started seriously a month ago other issues were ongoing ....
I will update because it may help others thank you 😉
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