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Merry Christmas

Posted , 10 users are following.

debbie27473
debbie27473

Just wanted to say Merry Christmas to everyone on the forum. Thankyou so much for being there for me when it seemed nobody else understood. This is an absolute lifeline. Ok.....deep breath...lots to do...remember to pace....keep taking medication and must try to stay awake when in company!!! Take care everyone x

6 likes, 21 replies

21 Replies

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  • tavidu
    tavidu debbie27473

    Posted

    Merry Christmas to you debbie and all the very best for 2015.
  • muirkelsi
    muirkelsi debbie27473

    Posted

    Good morning Debbie,

    I am so glad that I found this Forum. I have had PMR for over a year, and now on 8mg of prednisolone. As soon as I dropped to 8mg the pain in my arms came back stronger than before. I am debating whether to increase the dosage, or persevere,and wondered if anyone else have had this problem. At the moment my arms and shoulders constantly ache.

    Hope you all have a happy Christmas.

    Kind regards,

    Grace

    • EileenH
      EileenH muirkelsi

      Posted

      If the symptoms have come back the chances are you are at the borderline of your longterm dose. I'd go back to 10mg - if you were using the reduction plan the Bristol group recommended then you would be on 10mg where they keep patients for a year. It doesn't mean that is the lowest you will get, it means it is the lowest at the moment. Especially with Christmas and New Year don't allow the inflammation to build up or it will get away from you and you will need an even higher dose. Clamp down on it quickly and then reduce in 1/2mg drops and see if it is 9mg or 8.5mg that is the right dose for you.
    • Sheilamac_Fife
      Sheilamac_Fife muirkelsi

      Posted

      Hi Grace,

      I have been on Prednisilone since July and am now down to 11.5 and still have no pain so I can only tell you what I intend to do if/when I find myself in your situation.

      My understanding is that we reduce until we reach a level that still covers the pain and stiffness and then we can settle at that dosage for a little while giving the condition time to recede by itself. I can't conceive of going back to that awful pain! Seems to me that would make tolerating the side effects of the steroid a waste. 

      So, I would increase the dose until the pain goes then at least stay at that dose until Xmas is over and maybe try again at a quiet, stressfree time.

      A happy Christmas to you and a painfree 2015

      Sheila x

    • Sheilamac_Fife
      Sheilamac_Fife muirkelsi

      Posted

      Me again! Meant to say that many people stay on 10mg for as long as a year. It seems to be one of the latest ideas to prevent flare ups. 

      Sheila

    • muirkelsi
      muirkelsi Sheilamac_Fife

      Posted

      Thank you so much Sheila for your quick reply.

      As I am still very sore today, I am indeed going to increase the dosage to a level that gives me no pain. I will stay on that dosage for a while, and forget all about trying to get lower over Christmas and new year.

      Hope you and yours have a lovely time during the festive season.

      Grace

    • muirkelsi
      muirkelsi EileenH

      Posted

      Thank you Eileen for answering me so quickly.

      From tomorrow I am going to up to 10mg, and stay there for a while with the hope that I will not have this pain.

      Hope you have a lovely Christmas, and a great 2015.

      Kind Regards,

      Grace

    • EileenH
      EileenH muirkelsi

      Posted

      Yes - one basic rule is NEVER try to reduce when you know there is going to be a lot to do. Choose a week when you can take the phone off the hook and not be chasing round. 

      Or use the "dead slow and nearly stop" reduction plan that is all over the place on the forum - then keeping a free diary is less important.

  • Sheilamac_Fife
    Sheilamac_Fife debbie27473

    Posted

    Hahaha Debbie! Just sounds like me! Love the remembering to stay awake bit... 

    Merry Christmas to you too and a super painfree 2015! 

    Sheila x

  • pat38625
    pat38625 debbie27473

    Posted

    Yes Merry Christmas Debbie and Everyone else here.  PMR and pred is less scary when you have people like yourself around to help and support myself and other newbies and maybe even old timers (not age related).  Thanks again 
  • jean39702
    jean39702 debbie27473

    Posted

    May this Christmas end the present year on a cheerful note and make way for a fresh and bright New Year.  Here's wishing you all a Very Merry Christmas and a Happy, Prosperos and Healthier 2015!

    It's been wonderful having so many friends and knowledgeable patient experts and advocates sharing this PMR journey with me over the past 10 months. Thank you all for being here.  I can't say enough about the treasured advice from Eileen and other volunteers who spend hours and hours supporting and teaching us about so many aspects of this illness. Somehow a simple "Thank You" doesn't seem enough.  I do however, thank you from the bottom of my heart.

    Jean

  • tina-uk_cwall
    tina-uk_cwall debbie27473

    Posted

    Hello Debbie, thank you for your greetings. A merry Christmas and all the best wishes to you and all users of this site. As you say a great resource site. 

    Grace if I could just add to everyone else's advice re your apparent flare up. I was diagnosed this time last year and went on 15mgs -6 weeks, 12.5 mgs - 6 weeks, 10 mgs - 6 months then 9 mgs for 6 weeks. I attempted to reduce from 9 to 8 mgs and within 3 days all the old pains returned. I stuck it out for 16 days then by that time knew  it was a flare up so I upped my dOsage back up yo 9 mgs. However, I made the mistake of staying on the 9 mgs for only 18 days before attempting to again reduce but this time by a half (9 mgs 1 day followed by 8 mgs then repeat). The second time I lasted 4 days and all the pain began to return. I again stuck that out for 8 days but this time upped my dosage to 10 mgs so that the preds could really make an impact. They have. I will stay on 10 mgs for at least 2 months, and  provided I haven't had any pain at all for a good month of that 2 months will then attempt to taper off using the half method (10 mgs one day, 9 mgs the following day and repeat) I'm so mad with myself to think that I got all the way down to 9 mgs and felt really well and now I'm back up to 10 mgs. But that double episode was my first since I started the medication so I count myself lucky.

    happy Christmas everyone. Christina

  • tricia11872
    tricia11872 debbie27473

    Posted

    Happy Christmas and pain free New Year hopefully to everyone. Thank you Eileen for your advice. By the way are you a nurse? You are always very knowledgeable which is a great help.

    Tricia.

    • EileenH
      EileenH tricia11872

      Posted

      No, not a nurse. I worked in the hospital laboratories after deciding medicine wasn't really for me and then went back to Uni to study physiology but in a medical school physiology department so very whole-body orientated. Since then I have worked in labs, as a research technician alongside my husband (oygen levels in tissue and skin in breast cancer and babies - not at the same time) and as a translator for medical market research during clinical trials. You learn a lot and have to know a lot of background too as well as being able to explain complex medical stuff in plain English. I have had PMR myself for 10 years and for the last 6 years have been learning more and more about PMR and GCA - could probably do it as a specialist subject on Mastermind by now! I'm involved with a north of England research group as a patient rep. I suppose I could sum it up as almost never reading a novel before bed- usually a research paper or textbook. Sad I know, but there it is...
    • EileenH
      EileenH

      Posted

      And I should have added that I participate in 3 different forums with hundreds of members altogether - I have a memory like an elephant and all of the experiences recounted by patients are there as background as well as the medical literature I have read. If there is something I'm not sure of - I know someone who does.
    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Hi Eileen, thank you so, so much for being so "sad" (that's your word most certainly not mine). I would like to call you committed, caring, inquiring, and truly inspirational. I know when I say this that we all are so grateful for all your help. You know for yourself that PMR can be very scary with all its twists and turns and you help put our minds at ease in a way no dr could do. Christina.
    • tina-uk_cwall
      tina-uk_cwall

      Posted

      Oh and I forgot to add -I really like elephants!!!
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