I was diagnosed with PMR in early September aged 65. After 4 weeks of Pred at 15mg then 2 weeks at 12.5, I had to reduce to 10mg for 4 weeks on Friday, the day I flew to Tenerife with my family for 11 nights.
Having read posts here, I asked my GP if I could increase the dosage if I had a flare up as I would need an earlier prescription next time ( only 2 months at a time). He said it was unlikely but if so, I should persevere for at least 3 or 4 days.
My hip and back pain have returned today causing me to limp again. My tablets are small and not easy to cut but have brought extra so could take 15mg until I get home. However, worried I would negate the benefit of the last ten weeks then have the to start the taper process again- any advice from your own experience would be greatly appreciated.
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Mozartfan
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I have to say that a reduction of pred from 12.5mg to 10mg after only two weeks was too fast and has likely contributed to your flare. With that and all that preparing for a holiday entails plus flight, etc. the inflammation in your body has increased causing the flare.
Another word of advice: please don’t try to keep up with your holiday companions in activities that require extra energy or be tempted to have late nights. Rest up whenever you can.
I would try 15mg for a few days and if the pain has settled go back to 12,5mg and stay there, 2 weeks at 12.5 isn't long enough to know if it is enough - and the stress of travelling won't have helped.
NEVER reduce when something unusual is on the menu!!!! And I bet the flight didn't help the back and hip pain!
And it MIGHT be worth asking at a pharmacy - you MAY get to buy some pred if you waft the packet at them and claim you are running out. Then you won't worry about running out - and prednisone and prednisolone are effectively the same and same dose. Prednisone is processed in the liver to make prednisolone which is the active substance.
Many thanks to you both for your advice. I also thought 2 weeks at 12.5mg was quick but was told to follow my GP’s taper sheet. I am managing to rest in the sun and take lazy swims- had managed to return to gentle swimming before my holiday. Am heading to bed early with my 2 and a half year old granddaughter to let her parents stay up! 😂
123-go has kindly linked my info on flare, but have to agree reduction much too quick... you need to be on most doses for about 4 weeks, not two.. that's really not longer enough to know current dose is adequate before you reduce.
GP a bit too ambitious on taper plan- might work for some, but not all...
Have the white ones and have managed to cut the 5mg in two. Just going back up to 12.5 mg alone has seemed to the relieve the symptoms so have enough for the rest of my holiday and will take it up with my GP when I get back.
Thank you so much for your advice and support- it is so much better to get this from people who have been through this than my GP.
Doesn’t help that I have an underactive thyroid and have had to get my thyroid medication increased at the same time as my PMR diagnosis as many of the symptoms are similar.
Underactive thyroid is also a cause of the symptoms and a lot of people with both do better slightly overmedicated for thyroid - if you can persuade your doctor of that.
Hi Mozaertfan! You are getting the best advice on this forum, so I leave it to the experts here, but just a quickie, when the time comes to think about cutting up your pills, use a pill cutter, purchased as usual from mr.a. Online. Works really well. Keep strong!
Thank you! I was planning a conversation with my GP before a cruise in March but since it was to Egypt and Israel we have cancelled. However, I now appreciate the need to make allowances for events such as a holiday.
What a shame, my Nile Cruise was my favorite of all..maybe you can re-schedule down the line. Yes, I travel a decent amount and have no qualms upping my dose for vacations. Quality of life is what I care about, though I suppose I am lucky in that I suffer zero side effects (barring my moonface now
I just don’t understand why doctors see the need to attempt to rapidly reduce the prednisone dose. What’s worse is they have no idea of the disease activity level and yet choose to reduce the dose with stepped decreases that can, and often do, significantly overshoot the level of prednisone needed to alleviate the inflammation caused by the disease and manifested by muscular pain. They basically create a sine wave superimposed over the actual disease activity and the larger the change in amplitude the harder the attempt to discern the Pred dose needed. Smaller changes in the step and a duration that allows for response, reduces the difference between actual need and best guess. Thus easier to get on target. The current approach as I perceive, and lived it, makes the goal more difficult and the goal is not getting off Pred, but taking the minimal dose needed, meaning if, or when the disease abates the Pred dose is zero.
If the reader doesn’t know what a Sine Wave is, search the internet. It’s possible the actual disease activity is also represented by a sine-like wave, but I expect its change in frequency (cycle) is much longer than the dose response. But, if we can reduce the height (or worse, drough) of the wave in relation to the disease, it results in less intense discomfort (flare) and faster recovery with less of a dose increase needed.
Tbh, I didn’t agree with 5 mg jump when there was a flare and I was at less than 15 mg/d. Why do that? If you were fine at 8 mg, went to 7mg (especially if using DL Simple Taper (I’ve read about the other DSNS and think the DL ST is far superior) and have a flare, “I” am (and did not) jump back to 13 mg. The transition to a lower dose is so slow that literally just going back to the old dose (8 mg in this example) the exact same day of some discomfort being felt, in less than 3 days I had zero discomfort and what discomfort I experienced during the flare was mild and I could just ignore it. Approximately a week later try restart of the taper to 7 mg. If it failed again I knew 2 things, 1) I was darn close to matching the disease activity, and 2) maybe next taper try would be at 7.5 mg. There’s nothing magical about the 10 percent rule except I interpret it as “not greater than 10 percent reduction” and I never tried any reduction in less than 4 weeks, and used 4 weeks instead of 5, when it appeared I had room to maneuver when using 0.5 mg & 0.25 mg steps.
Just me. I’m a visualization / analytical person in trying to understand what’s happening and how to attempt to manage it.🤷🏼♂️
I agree with most - but the idea of the "add 5mg for a week" is for when there is accumulated inflammation that needs to be cleared out. If returning to the old dose works, then obviously that is preferable but often people have left it too long.
I have said for years that the disease activity waxes and wanes and probably forms a sine wave - easy to get lower on a low period if you go in big jumps and then it goes pear-shaped, But there is no way of knowing the cycle length - if only there were.
I can understand under that scenario, which begs the question, if feel fine on a specific dose, follow DL’s Simple Taper, and at some point in the process start to feel a twinge in the muscle groups affected by PMR, why the heck wait to “see what happens”? IMO that’s a big mistake and yes results in more inflammation that needs to be eradicated either requiring a higher than old dose to clear it out or longer at the previous pain-free dose. Since I never experienced NOT being able to acquire pain-free during the tapering process I have difficulty understanding how some are not able to achieve this if it’s only PMR involved. Understanding that I hit 10/10 on the pain scale and yet was given a dose of Pred that took me to zero pain in less than an hour. I’m not advocating use of an extreme dose (mine was 80mg) to get pain-free but it lends itself to the assumption (right or wrong) that there is a dose of Pred that will get a person to zero pain. Thus, under this premise, if following a highly effective tapering schedule and using presence or absence of pain (or twinge of a return of pain) as a go / no-go for a decrease, or returning to previous pain-free dose, PMR symptoms can be managed and if respond promptly on first indicator of possible flare with minimal discomfort. As to the concern of AI after a decrease I never experienced that on DL’s simple taper, only when 1) the decrease was too large (like a 2.5 mg decrease after being at 15 mg for 4 solid weeks ) and 2) doing what I call the free-fall approach (instead of slowly transitioning to a new dose with a 10% or less decrease) the patient (victim) suddenly decreases the dose by more than 10% all at once. It’s like walking down stairs where you can’t see the next step and possibly you fall on your face. In that case, 24-36 hours after the new dose one experiences the possibly temporary AI effect, which usually resolves itself by subsequent day and a day or 2 after that a PMR flare if the Pred dose is inadequate. Not a fun nor a very efficient approach wouldn’t you agree?
It isn't - but most people trust their doctors know what they are about and most of the reduction plans are based on the more usual approaches to tapering pred after longer term use plus this crackers belief that PMR works to a timetable and is gone in 2-3 years. You and I know that PMR is different and we see the logic of creeping down - but the doctors have rarely had PMR, the ones who have understand where we are coming from and often admit it. Patients are infected with the doctors' terror of pred and they too want off it asap. And they don't like the side effects, above all weight gain. So they WANT a reduction to work, to a level that blinds them to reality.
No-one is going to do a study on the best way to use pred - no money, it won't save much money and anecdotal evidence never convinces the medics. So we are where we are - and likely to be stuck there for a while! There are 2 things we desperately need: a definitive marker for diagnosis and also one to monitor disease progression that is better than "just" symptoms. A better understanding on the doctors part of how to use pred would help too.
The other problem with your comments is that using a very high dose of pred at the start may obfuscate what is going on. PMR is often characteristic in responding well to a lower dose of pred within hours. But other things will respond to very large doses and to some extent that is looked on as a diagnostic tool. I think that using a moderate dose first and then a few days of a high dose might be a good approach - much like the pulse therapy sometimes used for GCA which seems to allow for a faster reduction, at least at first, and in the longer term a low cumulative dose of pred.
And one thing that does defeat me is the not using a cytokine assay to know the inflammatory substance they are dealing with. If they did that in GCA, they would know if this patient will get off pred altogether . They are stabbing in the dark.
I agree, especially the extremely high dose. I was upset after getting home and doing some research. The 80mg would have made sense if I also had symptoms of GCA, but I didn’t, only in my legs. I also believe, starting at 15 mg is too low, what did the one paper recommend starting at 15 mg and 7-10 days before seeing any relief? I think in my case they should have started me at 25-30 mg and kept me there until all pain was abated for at least a week and then have me taper by 2 mg using DSNS preferably DL’s, but that’s 20:20 hindsight. They’ll continue using the stair-step approach with a 4 week tread and a 10, 5, 2.5, & 1 mg step (after 10mg) and wonder why patients complain of AI & PMR symptoms along the way.😕
They did used to use 30mg as a starting dose and, anecdotally at least, it was better according to a lady who has had it twice and the first starting at 30mg was a doddle compared with the second starting at 15mg. But most of the tapers DO recommend 1mg at a time below 10mg which is something, Just some need 1mg at a time sooner than that. The 10% of current dose improves things a bit.
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