1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Dizzyness on lowering my head

Posted , 12 users are following.

ricky23486
ricky23486

after 3 years on prednisone  for pmr I have tapered from 15 to 8 mg daily.  A few days ago I noticed a new symptom ....that my sense of balance is impaired when I bend down or bend my head  forwards.  I wanted to read what others have said in the past about dizzyness but don't know how to find the discussions.  I know that if it is not pmr related that it could be caused by pressure on the blood vessels. But I wonder what it indicates ...am I developing something new? . Or is it typical of pmr / prednisone / and if there is anything at all that I can do about it?    

 

0 likes, 61 replies

61 Replies

Next
  • Dirk_St._Clare
    Dirk_St._Clare ricky23486

    Posted

    I have been on prednisone for 2 years from 15 mg down to 6 mg About 6 months ago I started to loose my balance when walking, my doctor said it could be a slight side effect on pred. But I also suffer from Haemochromatosis which is similar to PMR

    joint problems, they are not sure what is causing it. On your dizziness try moving slowly when moving your head or bending down, that may help.

    good luck and keep us all informed we all experience different symptoms.

    • ricky23486
      ricky23486 Dirk_St._Clare

      Posted

      I had to google Haemochromatosis.... I am always learning from this forum!   Thanks for your response.
  • sandy65909
    sandy65909 ricky23486

    Posted

    I experienced loss of balance since diagnosis. Not sure if it's PMR or Pred. I started taking Tai Chi, Quigong and do lower body work to build strength. I also have osteoporosis so balance is critical. Hope this helps.

    • ricky23486
      ricky23486 sandy65909

      Posted

      Sandy I agree with you that it is vital to maintain joint mobility and that the reduced level of activity affects all functions.  So this morning I began Water Walking in a heated pool.  It was 45 minutes and I actually enjoyed it!  So twice weekly water walking and twice weekly feldenkrais classes both of which are easy on the joints will, I hope, improve my fitness without causing injuries.  

    • sandy65909
      sandy65909 ricky23486

      Posted

      I commend your efforts! I know aqua fit is great for you. I'm too lazy to put in a bathing suit and do my hair. I always wanted to try Feldenkrais but they don't have it in NJ only NY. Do you like it?

    • ricky23486
      ricky23486 sandy65909

      Posted

      Hi sandy.  I don't do Aquafit I think.... all I do is walk back and forth and side ways in chest high warm water in a small hydrotherapy pool for 45 minutes .  It's is very pleasant and I feel good afterwards... it is very quiet and relaxed... and my hair doesn't get wet at all!

      as for feldenkrais I think it depends entirely on the teacher.  I now have a terrific experienced teacher who keeps you awake (!) in class . Who understands that many of us are in pain and have limitations.   It is very gentle..non competitive... each person does what she can and interprets the verbal instructions as understood.  There is no wrong way to do it.  I have tried out different teachers some of whom were so boring that I actually fell asleep on the floor ...!   Needless to say I kept looking....

      now that I have found a good teacher I can see how much it helps my range of movement.  .  Well worth trying I think.

       

    • sandy65909
      sandy65909 ricky23486

      Posted

      Thanks. I will try at some point. It's in NY but haven't seen it in NJ

  • EileenH
    EileenH ricky23486

    Posted

    You need to speak to a doctor about this. It really isn't typical of PMR and although it COULD be pred it would have happened far earlier. It is also possible it is due the lower dose you have achieved - this is the level at which your body has to start producing its own corticosteroid again and maybe your body is still catching up. Symptoms of  adrenal insufficiency include dizziness and low blood pressure. But having PMR and being on pred doesn't excuse us from other problems!

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      I totally agree with Eileen that having PMR and being on Pred doesn't excuse us from other problems. GPs should just not dismiss it and think 'pred'.

    • ricky23486
      ricky23486 EileenH

      Posted

      Thanks Eileen, I will definitely check in with the rheumatologist... 
  • lodgerUK_NE
    lodgerUK_NE ricky23486

    Posted

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

    Then take part in the Research in 'Your Ears',

    It is looking more and more likely that is and other balance problems are part of PMR and we need it confirmed by the researchers.  We need to help those people who are doing research to help us and future patients.

    • ricky23486
      ricky23486 lodgerUK_NE

      Posted

      hello lodger.  I offered to participate in the research but they only want U.K. Residents so I cannot be of help!  Thank you for the resource addresses.

       

    • linda17563
      linda17563 lodgerUK_NE

      Posted

      I have tried a couple of times with the research "your ears" I get page "not found" every time, is it still ongoing?

    • lodgerUK_NE
      lodgerUK_NE linda17563

      Posted

      Yes Linda

      But because the NHS was hacked earlier this year all the email addresses are being slowly changed..........this means that the new email address is :

      Susan.pugmire@nhs.net.

      If I could get my hands on those hackers, a tonque lashing and mending holes in the road comes to mind.

    • lodgerUK_NE
      lodgerUK_NE ricky23486

      Posted

      I know, it is so frustrating.  However if you go to our website and click on the Research drop down menu, there are two international surveys ongoing since 2008 on PMRand GCA and one for GCA only.

      http://www.pmr-gca-northeast.org.uk/

      Cgharity Reg No 1138409.

    • EileenH
      EileenH lodgerUK_NE

      Posted

      The email address in the link is correct - Mr A  Moderator changed it for us.
    • ricky23486
      ricky23486 lodgerUK_NE

      Posted

      hello lodger... I just read your reply ..I will check it out .  Thank you
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.