Is the Pred still working?!

Posted , 16 users are following.

Sometimes I feel the pred is not doing anything anymore (after 4 years).

For months my ESR hovered between 18 and 20, now it hovers between 30 and 35.  I am on 6mgs of Lodotra, but nothing seems to be changing.  If nothing is improving, why should I continue with it?

Has anyone any comments?

Thanks in advance.  C.

 

1 like, 27 replies

27 Replies

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  • Posted

    Sorry to hear that you are feeling so low at the moments are thoughts are with you Constance.

     

    • Posted

      How many times has it been said 'listen to your body' and we all still get frustrated and want events to move at a quicker pace - just seems to be a part of modern culture!

      Regards, John

  • Posted

    Constance, my rheumatologist goes my how I feel not the lab numbers. He explained some people have normal numbers and feel terrible others have high markers and feel well. He says he doesn't treat numbers with PMR. 

    Other factors can be at play- 

    • Posted

      I agree with you.  My doctor always says "listen to your body".  All very well, but I am not sure what it is telling me!! 😏
  • Posted

    I say if your in pain your to low. My rumi didn't want me to drop just .5mg to take me to 17mg because I was in stress getting house ready for market.

    My body said OK and use the d's method and I'm good.

    So what is your body saying? You in pain?

    • Posted

      Yes, I am in pain, but as I have polyarthritis that is not surprising.  It's recognizing where the pain comes from that is the difficulty here.  If the pred isn't working (which it seems is the case!), I am contemplating lowering the pred further.
    • Posted

      I guess you could try lowering it and see how you feel. You know this game well enough to tell if you're experiencing withdrawl pain or a flare and adjust accordingly.

      Hope you get it figured out soon.  Never ending being in pain is horrible!

      Hugs,

      Diana🌸

  • Posted

    I guess I read "its not improving" and thought "is it getting worse or just the same?".

    Just being simplistically logical.

    If its the same, and stable, then stopping (why should I continue?) will probably rock the boat and it will change, probably for the worse if already in pain.

    If its getting worse then something else has changed or dose not high enough..

    I guess "stopping" is not an easy option as starting again is not as easy as just taking the same dose. Not an experiment to be taken lightly.

    So we are kinda stuck .... all we really know is we take some tablets and it still hurts,

    What I tend to do in such circumstances is change just one thing. If I change more I can't really distinguish what has caused any change. In this case change the dose up or down a smidgeon, change what I'm eating, change what I'm doing. But only change one thing at a time then observe the effect.

    For me, being methodical helps reduce bewildered.

  • Posted

    Without being an expert - just 3 years on Pred for my GCA I know there are patients who stay under treatment - Pred , for life.

    May be if you change the med you have been taking there will be a change on the outcome.

    Diet: are you avoiding completely carbs, wheat, sugar of any kind besides the fruits like blueberries?

    Are you taking ginger, turmeric?

    Try to grate fresh ginger as much as a dessert spoon in a cup then a bag of green tea. Pour boiling water and you have a delicious/ healthy cup of tea. Follow the anti inflammation diet. Drink lots of water in between meals.

    I would ask the doc if I could change the med you've been taking.

    Keep in touch. Hope you will get good results after making some changes.

    xxxx

  • Posted

    They don't do ESR at my practice cos it can mean something simple as you have a cold. What is your plasma Viscosity and your CRP? 

    I thought that that what you are describing means you need to up your dose not reduce it. My understanding is that The PMR is still there if you have pain and your markers are raised. I know you mentioned your Arthritis. Is that not a different pain? 

    • Posted

      Last sentence!  I wish I knew, that's the point!😏

      Pain in shoulders, upper arms, wrists, thumb (left hand), fingers, waist, knees and ankles. You tell me?

      Most of it is OA, but ALL????

      Apart from that I'm fine!😳😃

  • Posted

    you didn't give your age but ESR generally goes up as you get older.  A value of 30 -35 isn't all that unusual for someone in their 60's or 70's.  It's more important to know the trend.  A CRP ( c-reactive protein) is a better indicator of inflammation anyway.  As others have said, I wouldn't worry about the ESR particularly, more about how you feel. 

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