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@raven1955

I'm just coming up on my 7th anniversary of my PMR diagnosis. The early years were the worst until I educated myself through forums such as this one. Early on I was told I had osteopenia but taking calcium and Vit D, along with doing a better job with the right foods, has kept the numbers from changing. You can control the prednisone side effects but need to pay attention to what your body is telling you. It seems that no two people have the same reactions. Just remember that prednisone is basically your only friend in this fight against PMR. It has made me able to continue my full time job throughout the 7 years. In spite of what some doctors will say, don't be too fast with reducing. The golden rule with prednisone is to never reduce more than 10% at a time. To reduce faster increases the odds of a flareup and having to go back up with your prednisone dose to get things back under control. It gets dicey once you get down below 5 mg but I found that slowing my reduction schedule way down helped me avoid flare ups. I'm now down to 1 mg dose and don't much care when I get down to zero. The dose is so minimal that side effects aren't really a consideration anymore. What matters is being at the lowest EFFECTIVE dose and not rushing the reduction into a flare up. I had flare ups in the first 3 years that forced me to take pred doses higher than what I had initially taken before I could get the PMR under control again. Don't race to get off prednisone. PMR doesn't have a set time table to get over it. I know some people that have gotten over it in a year or less but they are the exception. I also know some that have had it 15 years and counting. I guess all I'm saying from experience is to not push yourself into poor health by focusing on getting off prednisone too quickly.

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Replies to "I'm just coming up on my 7th anniversary of my PMR diagnosis. The early years were..."

Thanks for your comment, Raven1955. It does seem that this is going to be a very slow, long process. I think I was frightened into wanted to get off prednisone ASAP because of the effect it could have on my bones, but as it's the only thing that keeps the pain under control, it's looking like I'll have to resign myself to taking pred long term. I've started taking a biophosphate to help protect my bones, even though it leaves me with mild abdominal cramps the day after taking the medication (weekly). I've also upped my calcium supplements, take 2,000 IU of vitamin D daily, and eat as many calcium-containing foods as possible. I also make sure I exercise every day, either walking or doing Tai chi. So fingers crossed all this will keep my bones from breaking down. I'm glad you've found a way to avoid flare-ups, and it's encouraging that you have been able to get down to 1 mg a day!