I was diagnosed with polymyalgia 3 weeks ago

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i have been taking 15 mg ofpred, for 2 weeks ,then down to12.5 ,I've got ringing in my ears ,hot sweats and headaches .has any one else had any of these symptoms , 

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  • Posted

    Hi Wendy, I have been recently diagnosed also. I have been on 15mg pred for 3weeks, and on 12.5 for the last week, but the symptoms seem to be starting to creep back. As for the sweats, yes I get them a lot and they are much worse than normal hot flushes. For the last week I have had almost a constant headache, and continual pulsating tinnitus which although I have had for a couple of years, now seems much louder. Am glad to see from other posts that the lack of energy is an issue, thought I was just being lazy!.
    • Posted

      Hello gwenda, I have a suspicion that the reason why your pmr symptoms are creeping back is because you did not get all the inflamation under control before you reduced your dose. Please look up the Bristol pmr plan, it's a very important document as it sets out the gold standard for pmr treatment, and that is 15mgs for 6 weeks, 12.5mg for 6 weeks then 10mgs for anything up to a year. I was on 10mgs for 6 months. Then many of us use the dead slow and almost stop reduction plan and even using that plan only ever reduce by .5 and not 1mg.

      think about your quicker than normal reduction to 12.5mgs. You last thing you want is a flare which will only see you back up to 15mgs again anyway. Regards tina

    • Posted

      Thank you Tina, will look that up, I did think having looked on this forum prevoiously that 3 weeks seemed quite a short time on 15mg to then start reducing, but I didn't feel comfortable mentioning to the doctor, as you assume they know best.
    • Posted

      If these symptoms continue to get any worse at all over the weekend then please go to A&E/ER - they are all signs that you could be developing GCA. If you develop ANY visual symptoms of any sort - blurring, double vision, spots, a feeling there is a curtain across your eye - then go immediately to A&E, call an ambulance if you can't get there without driving yourself and emphasise the loss of vision which makes it a medical emergency

      Otherwise, definitely go to your doctor on Monday morning and insist on being seen quickly - same day and preferably NOW. Tell him about the constant headache and increasing PMR symptoms. It may be that you reduced too soon - but it could equally well be GCA which requires a far higher dose of pred to control.

    • Posted

      Never assume a GP knows best about PMR or GCA. Even rheumatologists sometimes struggle.

      As an extension to my other post - if your GP won't take you seriously about the headache - go to A&E anyway where you hopefully will find someone who will. Not guaranteed but one can always hope. As a final hope - go to an optician. Not one who just tests for dispensing glasses but an optometrist who can examine the back of your eye and see if there is anything to be seen of reduced blood flow to the optic nerve.

    • Posted

      Ah ha! Gwenda, keep your eyes peeled to this forum, it will astound you how many gps and even rheumatologists know very little about this condition and in a bid to rid us of these 'terrible' steroids will cut corners to our treatment plan. I am very lucky and have an excellent rheumatologist and GP and although I have suffered 1 flare whilst reducing from 9mgs to 8mgs almost a year ago, I now use the dead slow and almost stop method of reducing and am at 7mgs and both my GP and rheumatologist approve of the plan. Regards, tina
    • Posted

      I'm on 12.5 at the moment still got pains in my arms like some one has punched me .and in between my shoulder blades .im trying to carry on as normal with my part time job .not going to let it get the best of me .ive stopped taking extra pain killers they where messing with my head
    • Posted

      Wendy, what was the pain like when you were on 15mgs? If the pain was better and now you are at 12.5mg the pain has worsened then you are on too low a dose. How long were you on 15mgs? And did this pain ever improve at that dose? It is not unknown for some pmr sufferers to start on an even higher dose, 20mgs for example, and work their way down from that. There are also some patients that never experience total relief from pmr pain but I would have thought you should have experienced more relief than at present. Regards, tina
    • Posted

      There lies a problem - with PMR you can't "carry on as normal". You have a new normal and you have to play your part in managing the pain. Your body is intolerant of exercise and if you do too much your muscles will react far more than "normal" as well as taking far longer to recover.

      I know it sounds hard - but that 's the way it is when you have any autoimmune disorder, you have to learn to pace yourself and rest adequately.

      Google "The Spoon Theory by Christina Miseriando" tp get an allegory of what you have to bear in mind when arranging your life.

    • Posted

      Hi 👋 Tina I was on 15mg for 2 weeks after being diagnosed.pain was a lot better but didn't go away completely. Then after 2 weeks had to go down to 12.5 pain in neck came back, and one of my fingers and knuckle went stiff .got to reduce again on Fri to 10mg .dont know how that's going to turn out , got appointment on 2nd Nov with rheumatologist.
    • Posted

      Go back to your GP and refuse to reduce again until you at least ahve seen the rheumatologist since this obviously isn't going to work. Go to this post

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      and download the "Bristol paper".

      They recommend remaining at the starting dose of 15mg for 6 weeks. They require an improvement of 70% overall in symptoms to pretty much confirm this is likely to be PMR and it sounds as if you managed about that. You just reduced too soon before all the existing inflammation was cleared out. If you reduce further you are likely to have problems getting the flare under control - so, persuade your GP to at least provide enough pred for you to stay at 15mg for the next 3 weeks. It isn't long - but long enough to be back where you were if you reduce to 10mg.

    • Posted

      Crikey Wendy! I can't add any more to what Eileen has said. What does your GP think they are doing. Pmr is not curable but treatable and we are all in this pmr boat for the long term, 2,3,4 years plus. Therefore, the preds have to be reduced slowly in line with the deminishing inflamation caused by the auto immune condition. Please read the Bristol paper. Regards, tina
    • Posted

      Tina you should not reduce if you are in pain at the current dose. In fact you probably reduced too quickly and by too much in the first place when you went from 15mg to 12.5mg after just two weeks. Your doctor seems keener on getting you to reduce than ensuring that you have the pain under control. Have you phoned them and told them you are having pain? 
    • Posted

      Sorry I meant to say Wendy not Tina, I apologise, brain going! 
    • Posted

      I rang the clinic they have got at the hospital 🏥 and explained everything .she checked my blood tests and my inflammation markers had gone down , so carry on with what I'm doing .till I see rheumatologist
    • Posted

      The 'inflammation' markers are only guidelines - how  you feel is essential.

      Some people, and there are quite a few, never ever have raised markers at all.

      ESR and CRP are guidelines and guidelines only to the fact that something is going on, you then have to find out what is going on,  they can be raised with a kidney infection, a cold, flu et al.  They are not exclusive to either PMR and/or GCA.

      If you are in pain, go back to where you felt comfortable and wait for at least a week and then try a drop of no more than 10% (do the math) and then sit at that dose for at least a month.   There are two reductions plans, available free of charge.   Follow this link and then go to the northeast website and email them.  

      http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      I could clatter some GP's and Rheumys. Sometimes I feel really nasty and just wish they could experience it for at least 3 months and see how they cope.

      There is no known cause or cure, the aim is to get you to be as comfortable and as pain free as possible until it decides when to go into remission. To enable you enjoy some quality of life.

    • Posted

      Your blood markers were probably relating to how you were on 15mg and as you say you felt better, that does not mean to say that the steroids had had enough time to get the inflammation under control. You will probably find that your blood markers have gone up again at 12.5mg if you are having problems. The thing is they are only a snapshot in time.
    • Posted

      I'm so confused with this , don't know what is normal and what isn't xx only started with it on 1st July. Got diagnosis October. I'm managing with the pain , as the steroids have dulled it .but don't know what to expect in the future
    • Posted

      Wendy, follow the link above, it leads you to websites and pinned postings put there by patients who have gone through what you are going through.  Knowledge is power.   Where do you live?
    • Posted

      That the markers were falling is good - but how FAR had they fallen? What really needs to happen is that you stay at the starting dose until the markers have fallen to a stable level. Then you can try a reduction - and preferably one smaller than 2.5mg or spread over a few weeks.

      As the others have said - they measured it at 15mg - that doesn't mean it is still falling. And anyway, it is the symptoms that matter. If the doctors were less fixated on numbers and looked at the patient they would do so much better in diagnosing and managing people with PMR.

      I know you are confused - but all YOU need to do at present is go and tell your GP that the pain is coming back and you would like a bit longer at 15mg until you see the rheumatologist. Although it has to be said - if 15mg helped a lot and (at present) less doesn't and you get even worse at 10mg then the rheumatologist is being faced with a fair level of evidence! Trouble is, you have to bear it for the next 3 weeks.

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