Has anyone else had pain return after reducing pred by only 2.5 mg?

I find it so helpful and interesting to read about the variety of experiences that people are having with PMR. As I reduce my prednisone, I do it by 1/2 mg at a time. For me, slow is the way. I have, both 5 and 1 mg tablets to make it easy. I receive 2 Prolia injections a year to maintain and even improve my bone condition . My Doctor requests a bone density test every year so we can watch that carefully. I wish I could reduce my prednisone much quicker and get off this medication but that doesn’t seem to be the way of PMR. I have learned to be patient with this procedure. By the way I am 84.

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.

I started with 5mg. After months my doctor tried 2.5. I couldn’t do that - too much pain. I went back to 5 for awhile. I started with four 1mg for a month. Then 3 for a month. Next month I’ll go down to 2 and then 1 for the last month.

Trying to decrease your prednisone dose by 2.5 mg so soon after being diagnosed is worth a try but might not work for everyone. It sounds like your doctor understands this. You wrote, "the doctor did hint that the tapering might not work and that I may have to stay on 15 mg for a while longer."

Don't feel like a failure just because you can't taper your prednisone dose only 2 months after being diagnosed. It took me more than 10 years before I could taper down to 15 mg of prednisone.

If you already have osteoporosis, steroid medications should be used for the shortest amount of time possible. I think a year or less would be a short period of time. Staying on 15 mg a while longer sounds reasonable.

Just be aware that there are a few alternatives to prednisone nowadays.

I was offered an alternative when it seemed like I would have to take prednisone for the rest of my life. After an alternative was tried, I tapered off prednisone in less than a year.

It all depends on your individual circumstances. Finding a way to get off prednisone is mostly trial and error.

Thanks Steph1939. I considered Prolia injections, but they cost $500 per shot and I don't have any health coverage. So I am taking a biophosphate to help protect my bones, even though I end up with mild abdominal cramps the day after taking the pill (weekly). I have to do something to prevent my bones from disintegrating if I have to be on prednisone for months or years. I'm glad the Prolia is working for you!

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!

Good luck with your tapering! I'm still on 15 mg, but am going to ask for some 1 mg tablets from the pharmacist when I renew the prescription, and try tapering off 1 mg/month. It'll be a long process, but it seems I have no choice.

Thanks dadcue. I'm sorry it took you so long to taper down to 15 mg of prednisone -- 10 years seems like such a long time! I do already have osteoporosis, so am stuck between a rock and a hard place. It's looking like it's going to take a very long time to taper off the prednisone, and in the meantime, I shudder to think what's happening to my bones. However, I have started taking a biophosphate on the recommendation of my doctor, even though it leaves me with mild abdominal cramping the day after I take it (weekly). I'm also doing everything else I can to protect my bones by taking calcium, vitamin D, vitamin K, etc., and getting daily exercise. I'll definitely look into some alternatives if it appears that I'm going to have to stay on prednisone indefinitely. In the meantime, I'm going to try tapering off by 1 mg/month even though that's going to take over a year.

I thought of doing that too -- trying 12.5 mg and then going back to 15 mg for short periods when the pain returns. I agree that it's impossible to cut the pills without them crumbling to pieces, so am going to ask the pharmacist for some 1 mg pills next time I renew the prescription, and try tapering off by 1 mg/month, even though that's going to take forever.

My rheumatologist and I came up with the strategy of tapering by 1 mg per month when I had repeated painful flares with 2.5. I started at 25 mg so it will take way longer than I had hoped to be prednisone free but this l mg approach seems to be working. Good luck everyone!