I,m down to 7mg of Prednisone now, for the last two weeks I have been having increasing stiffness and pain which is worse first thing in the morning , in fact when I get out of bed I have to steady myself on the furniture to avoid stumbling
knowing that I had an appointment to see the rheumatologist today I had my blood tested on Monday, according to the tests my blood is fine and the problems I have are not PMR related according to the rheumatologist ??
The only advice I got was to take painkillers , now is it just me or does anyone else get this stiffness and pain that's not connected to PMR and how do ease it ?
I get really frustrated with these medical specialists and a bit scared. We know what the stiffness and pain of PMR feel like, no matter what the blood tests say, they are not as reliable as how the individual sufferer feels. I sometimes suspect that I am just being pushed to get off steroids and the Rheumatologist is placing too much faith in the science of these inflammatory markers. Apparently steroid withdrawal can feel a lot like PMR though, so maybe it's that. But there are people on here who have done the whole PMR journey without an abnormal blood test, so it's not infallible.
I would dearly love to stop Prednisalone, I am 3mgs behind you and feeling increasingly unwell. I just hope it's a virus not a flare.
Good luck, sorry this is not advice, just an empathic moan.
I have textbook PMR symptoms but normal bloods. The pred works instantly (same day) whereas all other painkillers don't touch this distinctive pain. Arms feel like have been working out and hip pain at times spreads to sciatica like pain. I get so stiff have real trouble getting out of my car. Only taking pred as and when (once a week) have decent GP but rheumatology think I am too young and wrong gender for PMR. Hoping to get referred to Leeds. I find if the pred works then other painkillers are unlikely to help. Ive cut down to very low dose of tramadol now and am so much better off most meds.
I had normal bloods at diagnosis 16 years ago and I have had normal bloods ever since. I despair sometimes, where do these medics get their ideas? They must be more than 16 years behind. I was also 'too young' at 57, but had been hassling GP's for more than 2 years before that!
'Only taking pred as and when' that is a completely new one to me, and one which I feel may well make bad worse. As you have a miraculous reaction to Pred it should be treated as PMR whatever the docs say/think/feel.
Print off the guidelines for PMR treatment. Take it to your doc and shove it under his nose. And tell him clearly that symptoms are key and the science is at best a backup to the symptoms.
What do you mean wrong gender a 27 year old man has had PMR I have had it for over 4 years and cant get of the steriods long way from him though in age mine started at 60. If only pred stops the pian its PMR.
For a start - I don't think he is right! While you are on pred it is likely the ESR will lag behind any symptoms - whatever these so-called experts may say. In some people, while they are on pred the ESR simply doesn't rise. Symptoms should always be king.
As good a way as any to test if it is PMR is does it improve with a dose of painkillers? (Not that I have any faith in using them, paracetamol is useless and you shouldn't be taking NSAIDs while on pred). If it does - then he MAY be right, but I can't see any good reason why it shouldn't be just a mild flare of PMR. If the NSAIDs don't work, then try a couple of mg more pred for a day or two. Is it better? Then it is probably PMR. You have almost certainly reduced to just slightly too low to manage the daily dose of inflammation and it has built up to the stage where you are starting to feel it.
Steroid withdrawal will appear the day you drop the dose - a flare will take some days, even a few weeks or more to appear.
There is a generation of doctors who are so convinced the labs can do no wrong that they forget that physiology and medicine don't obey mathematical rules - there is a human element in them. It really infuriates me.
Agree with this, I'm 52 and had the clinical symptoms for 18 months now. I was totally ignorant of PMR and googled 'bilateral arm pain' and 'morning stiffness' - I was stunned when PMR came back as it was like someone describing my symptoms exactly. I also get nosebleeds every morning and was also checked for Wegeners, negative tests thankfully. I did take the bar guidelines to my GP but without the raised ESR he is very skeptical and just talks about the pred risks. For me painkillers do not affect this type of pain - actually they do work well for other non PMR pain, but this is only managed through pred. Not happy with my current schedule but feel I have control over it until I get referred to Leeds.
My comments disappeared!!! As for the maths.principles, as I understand it the normal curve of distribution that 2 x 2 % of any human distribution lies well outside the "typical". And as for citing low inflammatory markers to negate PMR whilst the patient is already on pred to calm inflammation , words fail me.
My meds review yesterday consisted in the GP gazing at the oracle - the results on the screen - with minimal discussion of symptoms of only one of the conditions for which I take the meds: Parkinsons, B12 deficiency, under-active thyroid, and PMR not entirely accepted by rheumy who I will next see in a year's time
This review was supposed to be dealt with by telephone in the form of a message awaiting me at reception about a " slight change in my medication." I made a face to face appointment as in no shape of form did I feel there had been a "review". How can you review meds without talking about the condition and symptoms. The oracle did not show that I was sitting there after the second bout in a month of debilitating "piriformis syndrome" (or was it tendonitis?) in the right hip/buttock area with sciatic pain. As I had used up my one thing to discuss I didn,t bother except to double check that despite what the packet says you can merrily continue taking co-codamol ad infinitum. I also didn't bother mentioning that my genetic profile indicates a problem in responding to opioids. Surely just once a year it would be a good idea to spend a little time in general discussion of your medical status
making sure we are all singing from the same hymn sheet? Or perhaps other GP's do do this. I might add that my GP is as kind and caring as any GP
It is great to have the opportunity to gather one's thoughts on here. Hope it is of some relevance to others,
It is when so many patients are told they are "atypical" that you feel heading for 50% come under that heading I begin to get annoyed...
Thanks for all the replies, I know now it's not just me ! I forgot to say I,m 61 and was diagnosed with PMR 11 months ago , from my limited knowledge of PMR I do know that there are a lot of variations of symptoms, I went off sick due tò shortness of breath among all the muscle pain and stiffness, when the hospital could find no reason for my shortness of breath my GP had a hunch I may have PMR , two days on high dose of Prednisone and shortness of breath went, only thing the GP and the rheumatologist said you don,t get that with PMR ? well looks like I did !
Still having problems with mobility for about six hours in the mornings then it does ease off ,
Well I did too - and they have probably not thought about the fact that you COULD have a large vessel vasculitis affecting your thoracic (chest) arteries! Mine appeared in February from one day to the next - and the typical PMR symptoms didn't appear for another couple of weeks. I, too, was checked for all the other possibilities including heart failure, nothing. 15mg of pred sorted it overnight - didn't need a higher dose than that but it was a while before I could reduce. Now I'm back down to 8mg.
How early do you take your pred? And is it plain white tablets? The longer after 4.30am you take it, the more inflammation it has to combat - your body sheds a new batch of inflammatory substances every morning about then - so the sooner you take it the less inflammation has been caused to clear up. A study found that the optimum time is actually 2am - the pred is ready and waiting at the back of 4am and the inflammation never gets started. A lot of people can't be bothered to get up and just take it when they wake early and settle down for another couple of hours to let it work before they get up.
That applies if it is plain white tablets - if you are on coloured 5mg pills then they are enteric coated pred which take some hours to be absorbed. A good way to deal with them is to take them last thing at night before bed - they take up to 5 hours to be absorbed so won't affect your sleep but will be working by the time you get up.
Thanks for your reply PMRpro , the first section of your reply sounds just like my experience, the shortness of breath came first which put me off work , then the pain and mobility problems , also the heart failure tests, CT scan, heart ultrasound and countless X rays and blood tests ( very nearly an armful ) ! The respiratory Doctor said all the tests are showing no problems and all he could do was reassure me and pass me on to a respiratory physiotherapist who I will see in January .
That sounds logical about the tablet timing, I,m on the plain white ones, I will give that try taking them earlier , I quite often wake up around 2am for some reason so may as well give it a go .
My breathlessness appeared quite scarily - we go for a walk around the village most mornings. There is a relatively gentle slope up to the piazza and normally it isn't a problem - suddenly one morning I got to the top and was absolutely gasping! It's usually himself who gets out of breath (one and a bit lungs, bronchiectasis and fibrosis from radiotherapy, any infection heads straight there!). But all back to normal now.
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Aching shoulders, upper arms and neck
First Rheumy appointment (since PMR diagnosis by GP) totally disappointing! Sorry no question just bringing myself back to reality!
Is it PMR or something else?
Frustrated in the US
PMR symptoms but low CRP levels
