I was diagnosed with polymyalgia 3 weeks ago

Posted , 11 users are following.

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

    Hello Wendy, sorry to hear of your recent diagnosis. I personally do not suffer from these side effects but I understand that many other sufferers do.

    i would like to talk with you about your reduction. The 15mg dose is the standard starting dose for many of us. However, please look up the Bristol pmr plan, because you will see that most Drs would like to keep you on that dose for 6 weeks so that the preds can really do their job. Following that it's down to 12.5 for 6 weeks followed by 10mgs for anything up to a year. I was kept on 10mgs for 6 months.

    from 10mgs many of us then like to follow the dead slow and almost stop reduction method with many of us only reducing by .5 mg per reduction.

    what you definately do not want to do is reduce by too much too quickly. You could end up with a flare, which could see a return of your pmr symptoms as you are not taking enough preds to control the inflamation.

    all the best, tina

    • Posted

      Hi Tina it was the rheumatologist who has set the doses over 6 weeks ,2 weeks on 15 ,two weeks on 12.5 then 2 weeks on 10 .ater that I have got another appointment with her .ive still got pain in my neck and shoulders ,but legs not as stiff as they was 
    • Posted

      Hello Wendy, I am not medically qualified but the reduction plan you mention is far to much, far to quickly. I think that is proved by the fact that you are still complaining of pain in your neck and shoulders. Many patients even on preds never experience total pain relief however I believe that your continuing pain us due to not getting the initial inflamation under control, and if this us the case I foresee you experiencing a flare. What does your GP say about this course of treatment? Regards, tina
  • Posted

    Don't worry - they are all possible side effects of pred.

    However - if the headaches get worse do go back to the doctor and if you get any visual symptoms at all go straight to the doctor or - if you have to wait at all - go to A&E/the ER as that could be a sign of GCA, PMR's big brother. Other symptoms include pain in your jaw when chewing that goes away when you stop, scalp pain or tenderness and sometimes the ear problems you mention. About 1 in 6 patients who have PMR do go on to develop GCA so it is always something to bear in mind.

    You'll find links to lots of information in other places here:

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

    Do come back and ask any questions you have. Someone will do their best to answer!

    • Posted

      How do they diagnose GCA ,should I go back with the ringing in my ears or wait for it to go 
    • Posted

      I mentioned some of the other symptoms, ringing in the ears is just one possible sign and that is why I said look for others.

      If you go to the link I gave you you will find the Bristol reduction plan someone has mentioned as well as plenty of information about the signs and symptoms to watch out for.

      The symptoms you are descriing all suggest that you weren't allowed to stay at the dose you started on long enough to clear out the existing inflammation. The other point is you are still having to work - and from experience we see that people who still have to work need a bit more to manage the symptoms. Unfortunately the average younger doctor hasn't a clue what going to work when you are ill feels like - they tend to assume everyone will be able to have sick leave like they could.

      You really shouldn't need extra pain-killers and paracetamol usually doesn't make a lot of difference anyway - in PMR it is pred that is used to manage the pain which is due to the inflammation caused by the underlying autoimmune disorder.

      Maybe you could discuss things with your GP? I don't hold out a lot of hope for you getting to speak to your rheuamtologist if you are in the UK. If you are somewhere else I suppose you might.

      As for weight gain - avoid processed carbs like the plague! Many people have avoided weight gain/lost weight they had put on with pred by cutting carbs considerably.

  • Posted

    Hi Wendy, I had terrible sweats and still do. Also headaches which I never had before pred, although they were not blinding headaches. I also was ravenously hungry all the time. As others have said you are reducing rather soon, it does seem to be worth taking the reduction slowly in spite of the medical profession wanting us to reduce at the speed of bats out of hell. How are you getting on taking just 12.5mg? 
    • Posted

      The pains are back in my shoulders and neck but they never went completly when I was on 15 mg .taking pain killers ,
    • Posted

      Hi Wendy, my point totally. You have not got the initial inflamation under control yet and you are already reducing.

      it is important to get the initially inflamation under control first and that takes time and 3 weeks is simply not nearly long enough.

      your rheumatologist is asking you to reduce to 10mgs in 6 weeks when if you look up the Bristol pmr plan you will see that the experts recommend patients stay on the starting dose of 15mgs for 6 weeks.

      also, I hope that any additional pain relief that you are taking does not consist of any anti inflammatories, that is ibuprofen. These drugs should not be taken along with prednisolone.

      regards, tina

    • Posted

      Thanks Tina. I take paraceetamol for the pain. I've go my appointment on 2nd November to see my rheumatologist. Will take it from there .I work as a cashier on the checkouts , this doesn't help .
    • Posted

      Look up the Bristol pmr plan, that way you will go with plenty of information. Information is power. You will hear of Many stories on this forum of patients being given the most inappropriate treatment plans that if followed would not only prove totally inadequate but could prolong a condition that is not curable and really needs to be managed sensitivity to keep under control. All the best, tina
    • Posted

      Hi Wendy, the steroids should be sufficient for the pain, they really are a wonder drug, but they do need to get the inflammation under control before you start to reduce. If you are having shoulder pain I should phone up your GP and ask if you can go back to 15mg until the pain is sorted out. Particularly as you are having to work. A lot of doctors do not seem to know that much about PMR.
    • Posted

      Oh Wendy I sympathise entirely with you , I have just gone on the sick and I'm leaving my job which is the same as yours on the checkout , I was on 15mg of pred for 3 weeks then put down to 10 for 60 days I'm now on to day 41 every day I wake up with pain in my neck and shoulders and after a couple of hours on tills my arms are sore I don't get much sleep and my mood has been very low people who haven't got this illness don't really understand because they see you trying to get on with things as you always do, anyway I'm trying hard to listen to my body now as everybody on this forum will tell you that's what you have to do , I'm waiting for my next appointment to see my rheumatologist I think I will try and print the Bristol plan out to take to show him or hope he signs me back to my GP to manage as I think they will be more sympathetic . I found paracetamol did nothing for pain unfortunately . Good luck to you
    • Posted

      Hi 👋 there I have downloaded the Bristol plan, I have yet to read it .im new to all this so just learning what its all about .only seen my rheumatologist once so far , I don't know what to expect from the pred. Weather I should be free of pain altogether or still have the pain in my neck and top 🔝 of my arms
    • Posted

      Good Wendy, you have made a start. Pmr is not a curable condition, but it can be controlled until the time when it hopefully burns itself out. But even then it is still there lying dormant possibly ready to flare up again.

      that is why this is a condition that we as patients need to understand it and our treatment plans inside out so that we along with our Drs treat this condition best, not having our treatment plans dictated to us. All the best, tina

    • Posted

      I've only seen mine twice and like you not sure what to expect , the pain and stiffness went within a day or so of starting 15 mg but since being on 10 I'm experiencing the same pain as you in the neck and tops of arms now wondering is it because of the repetition of till work aggravating the pmr , it's all a learning curve

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