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So far so good

Posted , 15 users are following.

Silver49
Silver49

I'm not sure what has happened but I have not received any notifications for a long time now. I am over 6 months off prednisolone and feel that life is getting back to normal. I have lost almost 1.5 st and some of what I would think may have been withdrawals have gone. Carbs no longer cause me the same weight issue but I am eating less of them. I thought I would check in to give some hope to those who may be struggling as I was there too and was on pred for over 4 years. I have had some stress in my life since coming off but my body seems to be coping with no return of PMR to date.

2 likes, 18 replies

18 Replies

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  • susan43406
    susan43406 Silver49

    Posted

    Thank you for posting this. Its so encouraging to hear. I am 2years in and stuck at 9mg for ages, trying to control weight and blood sugar! Its certainly good to know there's hope. Best wishes for the future. Stay well.

  • ptolemy
    ptolemy Silver49

    Posted

    That is fantastic news, you must be so pleased about it. Hope the PMR stays in its burrow!

  • Twopies
    Twopies Silver49

    Posted

    congrats, thank you for posting, you give me hope. best wishes on your pred and pmr free journey.

  • jillian92038
    jillian92038 Silver49

    Posted

    Well done and thanks for sharing. It is lovely to hear encouraging news. I would be interested to hear if you think you may have cut your carbs enough to explain your weight loss or if it is just the ditching of Pred.

  • monique46732
    monique46732 Silver49

    Posted

    So happy for you. Sounds so encouraging. I am 75 years old and was diagnosed with PMR over 2 years ago and have been at 5 mg for several months.My latest symptoms are extreme fatigue and shortness of breath.I live in Canada and am starting to wonder if I really have Lyme disease because of the lingering symptoms of fatigue but not much joint pain. If anyone has insight on this I would appreciate feedback. Thank you all

    • ling42044
      ling42044 EileenH

      Posted

      Hi Eileen

      I am glad you mentioned fatigue, i am on 5mgs of Pred, and for the first time for a long time, I've been feeling fatigue, and feeling sleepy often, and very low energy level. I posted recently about my neck, shoulder and upper arm pain, which i am not sure whether it is due to a flare from low dose or nerve trap. Anyway, I still got the shoulder pain, and this time, it seemed to respond to paracetamol for some pain relief. I just wonder, if it responds to pain killer, then it is less likely to be a flare, so I shouldn't put my Pred up. But the fatigue is there, shall I increase the dosage a bit, or just bear it . ? It's never a straight forward journey with PMR? Thank you for your advice.

    • ptolemy
      ptolemy ling42044

      Posted

      I really sympathise with you over the fatigue. I could hardly move my arms I was so tired. The trouble is if you increase the pred too much you have to go through the whole thing again when you reduce. I did increase it a bit so I was not too shattered.

    • EileenH
      EileenH ling42044

      Posted

      If paracetamol helps I wouldn't put the pred back up - because it is only a low dose of pred that prods adrenal function back to life. It is something you have to go through at some point - but one top PMR doc likes to keep his patients at 5mg for up to 9 months before continuing the reduction. It seems to work to get over that hump.

  • lynda62707
    lynda62707 Silver49

    Posted

    congrats silver! it must feel Sooo liberating to be out of this quagmire of pmr and prednisone! I Really needed to hear this today. a bit of hope and encouragement!

    I'd managed to wean down to 3.5mg till Yesterday! but I've been experiencing so much pain in my shoulders, knees, and fingers.....that yesterday I "caved", and took another 5mg. it definitely helped. today I went down by 1mg, and hope to go down each day, "Again"!

    anyway, good for you! I'm so happy to hear of your positive outcome!

    • lynda62707
      lynda62707

      Posted

      btw.....Lynda again. how long did it take for you to start dropping some weight?

  • Anhaga
    Anhaga Silver49

    Posted

    Check your settings to see if notifications is checked.

    Glad things going well for you. I'm at .5 mg but feeling niggles, going to hang in for a couple more weeks and see whether things improve or not.

  • Royall
    Royall Silver49

    Posted

    thats brilliant thank you for sharing, you have given me hope i am tapering to 2 1/2 mg and have pains around the top of my legs I think its probably withdraw from the pred . It is so nice to hear that someone has actually managed to get off the pred and getting back to normal

  • Royall
    Royall Silver49

    Posted

    thats brilliant thank you for sharing, you have given me hope i am tapering to 2 1/2 mg and have pains around the top of my legs I think its probably withdraw from the pred . It is so nice to hear that someone has actually managed to get off the pred and getting back to normal

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