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polymyagia

Posted , 14 users are following.

patricia38799
patricia38799

I have had this for 16months and taking 4g of predison is this safe over long periods

 

0 likes, 26 replies

26 Replies

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  • Michdonn
    Michdonn patricia38799

    Posted

    Patricia38799, according to this report we are safe :

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    Please read the report and put your mind at ease. Good luck, think positive. Go forward with a smile on my face. 🙂

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, the post was held up for sometime before it has posted, then the link has in. Oh well, who knows. That is a great report, I am going to try and show it to my Rheumy tomorrow, maybe a waste of time, but I keep trying. Got to think positive. 🙂

    • EileenH
      EileenH Michdonn

      Posted

      When I posted I also reported my post to show how silly it was. 
    • Michdonn
      Michdonn EileenH

      Posted

      Sometimes EileenH, you just have to smile. It's a little crazy. But I am happy we have this forum, it has helped a lot! 🙂🙂

    • lodgerUK_NE
      lodgerUK_NE Michdonn

      Posted

      It did not used to be crazy, until some .................. decided to update it and make it glaringly white and nobody checked colours with RNIB and they still not did give us an EDIT button, which some of us have been banging on about for years.  I have come to the conclusion that an 'edit' button is beyond the IT specialists who re-designed this site.

      I do know some good ones who could help.................and would probably do it free of charge as well.

  • elizabeth40672
    elizabeth40672 patricia38799

    Posted

    Hi Patricia, I have had Polymyalgia for 17 months and many on here a lot longer. You are lucky to be on such a low dose, I started on 25mg and have only just managed to get to 12mg. I think the message from this group is that everyone is different and equally the side effects are different too. We are all aiming to go as low as we can but only if it keeps the pain under control. For me, the pain of PM is worse than any side effect so at the moment being on pred is the only option. As long as you are being monitored by your doctor you can keep a eye on any side effects you may have from pred. Not sure this answers your question but hope it helps a little. 
  • celia14153
    celia14153 patricia38799

    Posted

    I was diagnosed in May, started at 25mg and quickly down to 20mg at which I stayed for several weeks. Now, using the slow method I am down to 18mg. 4mg is very low. Is it controlling the pain?  All drugs have side effects so it becomes a decision between what makes life possible and risk. We are lucky to have a choice. It's worth checking out the areas Pred may affect and keeping an eye on them with the help of our health team and this Forum. Hope all continues well for you. 

    • patricia38799
      patricia38799 celia14153

      Posted

      I started on 25mg  about 14 month's ago will see the rheumatologist in 6 weeks time .  Got down to 2mg but it was too small an amount now on 4mg and feel almost ok just a little pain in the shoulders which I can live with.ps I am 78yrs.Hope you do wellsmile

       

  • pauline36422
    pauline36422 patricia38799

    Posted

     patricia       like my friends say you  have  done well  getting  down to 4  mg  in such a short time,  but  take care now and don't go down too  quickly  from now on .  you are in the safe zone at 4mg.  I am struggling to stay at 3mg after  5 years  I still have a little pain  but bearable.  hopeing it don't turn into another flare. fingers  x   so don't rush it   good luck

  • lodgerUK_NE
    lodgerUK_NE patricia38799

    Posted

    If this is of any help,  I started on 60mg and it took me 4 years to get to 4.mg.

    Put these words in your search engine and read:

    'Practical Pain Management - Polymyaglia Rheumatica and Steroid Side Effects: New Findings.'

     

  • Snowman1609
    Snowman1609 patricia38799

    Posted

    I'm being treated for a Poly, still not official but started on Pred last week. Taking 35mg for 3 days, then 30mg for 4 days and so on. Not sure if this is a side affect but I get flushed in the face about 10 to 12 hours after taking them. Did anyone else experience this? No temp but can feel the heat in my face

    • celia14153
      celia14153 Snowman1609

      Posted

      Yes, I have had an occasional 'flush' but it seems to sort itself out so I haven't worried. As you say, no temp or feeling unwell. 😄

    • paul30500
      paul30500 Snowman1609

      Posted

      Snowman:  I did have the occasional flushed face when I as on 10-15  but at he lower doses  have not noticed any. 
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