I'm not celebrating yet but...

Posted , 21 users are following.

I have stopped my pred 3 days ago and no PMR pain. This is my second attempt at going from 1 mg to none and the first time the pains came back by that evening. So this is progress. I still have a lot of pain from other sources but I can tell the difference between that and my PMR pain.

In the 3 years I've been on pred I have developed osteoporosis and diabetes. I've lost 55 lbs so I know longer have diabetes. But I broke 8 bones in 5 months last year. It's been a rough disease and hope it never comes back.

0 likes, 19 replies

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  • Posted

    fingers and toes crossed! you didnt need to reduce to 1/2 mg first, huh? good for you!

  • Posted

    Looking good! Fingers crossed here, too! 🤞

  • Posted

    You certainly haven't had the easy version if there is one. Hold your breath time and everything crossed.

  • Posted

    well done amkoffee you have achieved what we all want to. Fingers crossed for you that you don't need to go back on the dreaded steroid. Keep in touch with you progress.

  • Posted

    Over the past 3 years when you've been struggling with osteoporosis, were you taking supplements, and if so, which ones and how much of each? Also, how much were you exercising to maintain bone density and what kind of exercises. I think both of these are important to deal with the negative effects of pred.

    • Posted

      I started taking calcium the day I started taking prednisone. However excersise has been almost non-existent because of my other chronic pain. Osteoporosis also runs in my family.

  • Posted

    Congratulations Amkoffee!

    You have overcome major obstacles and still persist.

    How did you loose 55lbs? Thats commendable!

    I was diagnosed with diabetes after 4 months on 10mg of Prednisone. I immediately switched to a low carb diet, eating only lean proteins and veggies. after 1 month on the healthy low carb lifestyle, my AC1 test went from 6.6 to 5.4 which is great! No metformin for me.

    For boneloss, I'm taking Fosamax.

    Fown to 7mg Prednisone, plus swimming a mile, 3 times per week. I tire easily, but believe exercise is essential for overall health & longinvity!

    Again, kudos Amkoffee, and prayers that you are successful this time. You give us hope👍!

    • Posted

      After so many broken bones I was given Prolia. I was supposed to take it again last month but my co-pay was $300 and I couldn't afford that so my rheumatologist will be starting me on Fosamax.

    • Posted

      Did you just have one Prolia treatment? If you had more than one the sooner you start the other med, whatever it is, the better, but you probably already know that. Hope it goes well for you.

      Gentle hug.

    • Posted

      Amkoffee,

      If there's any way you can get to a Y or gym or someplace to exercise in water, it's the best there is and no impact on your bones.

    • Posted

      I was on Fosamax throughout.

      What is co-pay? Some deal with your insurance company?

      My doctor said because she was a registered doctor and could use her 'special' code, Fosamax cost $5 to her patients. Otherwise around $NZ300. I was impressed! Recently, fees structure has changed, pharmacies do not charge (was $5) for any doctor's prescriptions - which are also free. Had to go on prednisone (for suspected PMR) and Celecoxib for a short while - all free.

      (Angry that you don't have a national health system!)

  • Posted

    Congrats to you Amkoffee for getting through with persistence, however difficult the journey has been. All digits crossed for your continued success and good health.

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