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Is This a Safe Taper as Prescribed by my doctor?
Polymyalgia Rheumatica (PMR) | Last Active: 7 hours ago | Replies (29)Comment receiving replies
Thanks for your informative reply @cavalryman . I am currently on my second long term prednisone treatment, the first starting in 2014. I was then officially diagnosed with PMR, and finally got off the pills after 2 full years, which back then I felt was a very long time. Fast forward to summer of 2023, and my symptoms returned, yet my markers do not show PMR. The symptoms are the same, but thankfully not quite as severe as previous symptoms were. However, I’m now rapidly coming close to two years and am currently on 9mg/day. What’s very disappointing is that back in early December I had gotten down to 2 mg. for a week or so, while tapering down 1-2 mg/ month, and suddenly had two terrible days. I was then told by my rheumatologist to double the dose to 4 mg but with no relief. I then went back up to 10 mg until February where I’m now on 9 mg. After reading a lot of comments and posts from others with similar issues, and being fairly anxious about the tapering process , it sounds like I may be at less risk of flair ups with .5 mg reductions every two weeks? Any thoughts on this? My doctor recommended 1 mg reduction on March 1st, and continue on that schedule as long as I am relatively stable. When doing the math though, .5 mg reduction per month means another year and a half, and that’s if I make it that far without incident. Sorry for the long post, and am hoping you and perhaps some others will read my story and offer some sound advice. Thank you to all and I wish everyone the best results in your journey getting off these medications and back to a healthier life!
Replies to "Thanks for your informative reply @cavalryman . I am currently on my second long term prednisone..."
Hello heals1225, I am sorry to hear that you are on this journey for the second time. I have been doing a lot of research for the last few years and that research states that the patients who come off steroids quickly initially are more likely to relapse. I do understand that you feel two years is a long time. 40% to 50% of patients have symptoms for over two years, and 25% have symptoms for over five years.
Regarding the taper, personally I would not set targets so far in advance. I too did this at my gp recommendations for the first year and a half and failed miserably. Today I would now do a taper one half an mg. I am presently on one and a half mg. So the first week I would do the new lower dose on Monday and Thursday. Then if I felt ok, the second week I would add another two days of the lower dose Monday, Wednesday, Friday, Sunday. Then in the third week I would do the new lower dose every day. Then see how you feel, if you feel okay just repeat the exercise when you are ready. If you feel a little more pain appearing just wait until it feels better.
When you reduce to a lower level, if it only feels a bit more painful try and sit it out for a couple of weeks and take painkillers. That may be all that is needed as your adrenals start to work again. Always remember that it is not slow if it works ! Hope this is of some help.
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What has worked for me:
Starting at 10, decrease at 1 per month to 5. Below 5, decrease at 0.5 per month. I am now at 0.5 until the end of this month, when I go to zero. Amen.
I had my share of non-PMR-level aches and pains during this 15-month period, but handled it with Tylenol and physical therapy, and once below 3, with an occasional 125mg dose of ibuprofen taken with food and an antacid, all with doc’s approval. At this point, the niggling pains have been gone for the last 2 months.
What worked for me may not work for anyone else. Good luck.