Hi all - I seem to be stuck in a yoyo reduction situation. My problem is that once I follow the flare protocol and add 5mg to my then current dosage, all goes well EXCEPT that when I reduce back down, I don't seem to be able to get back to or close to the prior dosage. This has happened to me 2-3 times this year, so I don't feel I'm making progress, but moving backwards. I've been reducing by .25 mg. every 3 weeks.
One year ago, I was at .5 mg and flared when I tried to reduce to .25. Since then it has been up and down. 3 weeks ago I was at 1.5 mg and started to ache so I followed the flare protocol and added 5 mg. on for 2 weeks, at which time I felt great, so reduced to 2mg. I've been on 2mg for about 3-4 days and have gotten a pretty strong pain in my left groin, along with other minor niggles. Same process happened about 6-8 weeks ago. So, it's not so much a matter of how long do I stay at a certain level, but how do I follow the flare protocol and get back to 1 dose above where I was before. It just doesn't seem to work for me when I try to reduce back down to just above where I was. Ironically, I am reducing back down to where I was perfectly comfortable once upon a time. So, do I need to go back up to 7mg. and just stay there and start all over again? How do I find my "new normal"? Does it work to go up a small dose for a few days and increase incrementally once I feel "stable"? So frustrating! I welcome (and know you will provide) your helpful and informed view. Thanks in advance for your guidance!
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canadacando
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Having reduced from 60mg to 0.5mg a year ago would say much too quick.. and ever since then with your yo-yoing you have never had your PMR fully under control since.
Unfortunately as many before you have discovered once you get into that scenario, each flare seems more difficult to control.
Not sure how long your mother’s PMR lasted but for many it’s a lot longer than a couple of years.
I’d be inclined to go to 7mg, do the 2 weeks there, and then maybe try a drop to 5mg - and use that as your new dose. Stay there for at least a month, which hopefully will be enough to sort things out.. but with all that gone before a bit longer probably wouldn’t do any harm.
Then think about restarting tapers.. and as slowly as you need to go, both in time [see couple of regularly used plans in links] and dose.
Thank you DorsetLady! Just to clarify, I've had PMR for 3 years and started at 20mg. (not 60). My GP had told me to start at 60mg, but luckily I checked with this forum as it seemed way too high, and ended up starting out at 20mg. My mom's PMR lasted 12 months, and my hair dresser also 12 months. That led me to believe that this would resolve in 12 months, but now I know better (sadly). Thanks for your thoughts on how to proceed.
Okay, thanks for update, hope you can get things sorted.
The comment re quick reduction was based on information in your profile [starting at 60mg in late 2022], and your comment above saying you were down to 0.5mg a year ago [so late 2024]. Perhaps you would like to update profile, always helpful for others when replying 😊
I would say you are reducing far too fast and whatever dose it is that the flares are happening at is actually quite a bit lower than what you require to manage the inflammation. You had reduced so fast that you missed that dose on the way down and didn't notice until you were well past it. When you went up 5mg you were then at about what you needed - there was no margin to drop back at all.
I think you need to go to the dose you are OK at and STAY there for at least a month until you are really stable. Then try to taper 1/2mg at a time, not more often than after 4 to 5 weeks at a dose, maybe longer, rather than dropping back to a dose at which actually the problem was already present. The lower the dose you get to successfully, the slower you need to go. You cannot rush PMR and you need the amount of pred you need to manage the inflammation present, if you get lower than that, the ongoing autoimmune disorder will drip inflammation that mounts up over time until you are back where you started. And gets harder and harder to control as you get more and more frustrated. Three years is at the lower end for PMR - and just because you know a couple of people who were off pred in a year or so, there is absolutely no guarantee you will be a third. I quoted a paper yesterday that was quite clear as long ago as the 1980s that there are at least 2 populations with PMR, up to about 2-3 years and another where it lasts MUCH longer. I think there are more versions of PMR - and so does Prof Mackie in Leeds.
A couple of years ago I was Yo-yo-ing. My GP thought I might need Methotrexate to assist with tapering Pred and so wanted me to see a Rheumatologist. I asked him to refer me to Dr Joel David, in Oxford, privately. Having kept a detailed record of my daily Pred doses I was able to make a graph of this (in Excel). Dr David, took one look of my graph and said I had been trying to taper much too quickly! This is the tapering regime he advised me to use:
O = old daily dose, N = new daily dose
Month 1: O, O, O etc every day
Month 2: O, O, N, O, O, N, O, O, N etc
Month 3: O, N, O, N, O, N, O, N, O, N,
Month 4: O, N, N, O, N, N, O, N, N,
Month 5: N. N, N, etc every day
The difference between O and N is 1mg and in my case, in August 2023, O was 8mg and N was 7mg
Using this method I had no trouble getting from 8mg to 5mg over 12 months. I stayed on 5mg for several months and I have recently commenced tapering from 5mg to 4.5mg using the above method. I was diagnosed in March 2021 and started on 15mg.
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