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lots of pain

Posted , 7 users are following.

grandmaDylan
grandmaDylan

I started taking 20mg of pred in march this year and am now on 12mg daily. I was on 15mg until about three weeks ago when my gp told me that my inflammatory markers were normal, I am due to reduce to 10mg by the end of this month. The thing is that I'm really really sore and stiff, the pain is pretty much back to where it was pre pred. I have osteoarthritis in my knees and hips but when I was on the higher dose of pred my knees and hips were pain free. Needless to say I'm really suffering and struggling to walk. I'm desperate to get off the pred because its had such a severe e

0 likes, 10 replies

10 Replies

  • lucy82013
    lucy82013 grandmaDylan

    Posted

    JUst to tell everyone that I hd my first Bowens Therapy today. Lucy
    • grandmaDylan
      grandmaDylan lucy82013

      Posted

      I meant to say that the pred has had a terrible effect on my diabetes, causing me to now be insulin dependent. Hopefully when I'm finally off pred I will be able to come off insulin too.
    • Anhaga
      Anhaga grandmaDylan

      Posted

      Oh that is tough.  Are you getting any help regarding diet and so forth to help you feel better?
    • judy20492
      judy20492 grandmaDylan

      Posted

      Deborah, I too have become insulin dependent since going on Pred. I am using a once a day insulin pen that is controlling my glucose readings very well. It took a little trial and error to find the right one for me. I just consider this part of the Pred package. I hope as I reduce down (was on 10 mg before flare, now at 15 mg) I will be able to get off the insulin, if not, oh well. At 73 it could be worse.

      Hope this helps,

      Judy

  • Mrs.Mac-Canada
    Mrs.Mac-Canada grandmaDylan

    Posted

    Hi Deborah,

    I am not medically trained so this is from my personal experience and what I have learned on this forum.

    It sounds like you have a doctor that doesn't understand PMR at all.  If your  markets are normal it means that your pred is doing the job of managing the inflammation. It doesn't mean the PMR has gone.  The dose you take for PMR is the one that best manages your symptoms. It sounds like you are having a flare and might  consider going back to that dose and begin to reduce in smaller amounts.. As you know the rule is no more than 10% at a time then wait till you feel the symptoms are OK.  At around 8mg or 7.5 mg the Dead Slow Nearly Stop method of Eileen's works well for many people. 

    Decreasing after each flare becomes more difficult I have found. I was at 4mg last Nov.  And had a flare so back up to 10mg  and am only now back to 7.5mg.

    the real stinker here is your diabetes. I'm afraid all I know is that pred really plays havoc with some peoples sugars. Hopefully someone will belong that has experienced this and can let you know how they managed.

    i hope you are feeling better really soon.

    Hugs,

    Diana🌸

  • tavidu
    tavidu grandmaDylan

    Posted

    Hi debs

    With a drop from 15mg to 12mg this quickly I am not surprised you are in pain and quite a few members on this forum will tell you that markers are not the main indicators for PMR, the pain is. Doctors who have not suffered PMR have no idea of what we are going thru and most need to be educated. Go back to 15mg if this is where you were most comfortable and see if things improve and if not go higher if you have to so that you are controlling the pain, then reduce again very slowly. We have all been there so you are not the first but stick with the slow method and tell your doctor about this website so that he/she can educate themselves as to what PMR really is. Drop no more than 10% a month at most and eventually you will feel the benefits. Good luck, Dave

  • constance.de
    constance.de grandmaDylan

    Posted

    I agree with Mrs Mac - your doctor doesn't seem to know anything about PMR.  I know it isn't easy to change doctors these days, but it may be worth considering.  Also I believe in America (where I presume you are!) that the doctors sometimes refuse to give you Pred if your results are 'normal'.  Eileen, our 'expert' on here, has had PMR for 10 years and as I have understood her bloods have always been, so called, normal.

    Regarding the OA I am surprised that Pred helped the pain.  I have OA in hips, knees and ankles and the Pred has never seemed to help (I am on 5mgs at the moment).  

    Don't be on a rush to get off Pred.  We all feel/felt that, but have learned by bitter experience it's not the way - you yo-yo between doses if you do.  Be patient, Pred has many side effects but it is not a 'killer'.

    Much more concerning is your diabetes.  That must be kept under control.  I am sure there is a forum on this subject where you will be able to contact other sufferers.

    Good luck, and all the best.

    Constance 💐

    • Anhaga
      Anhaga constance.de

      Posted

      When I started pred at my initial (and highest) dose of 15 mg ALL my aches went away, including fairly severe sciatica, caused, I guess, by spinal stenosis from OA,  which has returned, although at 8 mg I have very little PMR ache in my upper thighs and none in my shoulders, which were practially crippled before treatment.  So, yes, the pred does seem to help with non-PMR pain when you are getting a high enough dose, although the risks associated with pred would make it a poor choice for treating anything that responded to less dangerous medications.  I must say I did enjoy my first month on pred when I was pain-free, and still under the misapprehension that I was cured and would be weaned off pred in three months! rolleyes
  • grandmaDylan
    grandmaDylan

    Posted

    Thanks for all your replies. I've just finished a 6 week expert course for diabetes. It was run by a dietitian and a practice nurse. I told them that despite joining a diet class and sticking religiously to the diet I didn't lose a single pound! They told me that taking insulin and steroids would stop me from losing weight and that I should try to maintain my weight and not put on any more. DD I do have the horrid moon face which really upsets me. My gp is more concerned with the risk of giant cell arteritis which is associated with polymyalgia and can cause irrevocable blindness!
    • Anhaga
      Anhaga grandmaDylan

      Posted

      Hmmm, I think I would be more concerned about the possibility of blindness, too  However, if your doctor started you at 20 mg it would appear that there was no real worry that you have GCA - you would have been put on a much higher starting dose.  You don't have any of the symptoms of GCA, do you?
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