New read on Tapering : I have had PMR for four... - PMRGCAuk

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New read on Tapering

MarkyMark60 profile image
23 Replies

I have had PMR for four years. I have taper down from 20 mg to zero mg. I have tried every way not to get the pain of tapering down but not until now have I found a way that really works. So I’d like to pass it on to you. My rheumatologist once told me when ever I am having a bad week to go back to 20 mg for two days 10 mg for two days and then back to my dose. He calls this 20 20 -10 10. I have found over the past year that I can take this one step further. And that is before I’m ready to taper down a milligram I do 20 20 -10 10 and then drop a milligram. This seems to work without the usual prednisone pain of tapering to a lower dosage.

I was totally off prednisone a year ago. But this has been a bad year for me. Two kidney stone operations, hernia surgery, and a catastrophic hand injury had brought back my PMR with a vengeance. Over the past year I have used this strategy to come from 20 mg down to three with little or no pain. I present it to see if it might work for you.

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MarkyMark60
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23 Replies
Ranchero profile image
Ranchero

That is really interesting. I am at7.5 and worrying that my next 0,5 reduction is problematic. I will keep your method in mind.

Noosat profile image
Noosat in reply to Ranchero

I know how you feel. I am finally down to 2mg over 25 months. Each time I have committed to a lower dose, I have been apprehensive. However, each time I have reassured myself that I could always go yp in dosage if I were to have serious problem. So far the worst thing has been overwhelming fatigue in the afternoon. I can put up with that when I think of long term effects prednisone can have on my body, especially my eyes. Enjoy the day and good luck.

IdasMum profile image
IdasMum

Tempted by this idea. I am also tapering using the DeadSlowStop method.

Currently taking 8mgs x 2 per week and 7.5 the other days.

Your 2020 sounds worse than most! Hope you have a better 2021.

SheffieldJane profile image
SheffieldJane

Thank you for your tip, it sounds interesting and new to me. So sorry about your rotten year. I hope this one is better in every way.

Maisiek profile image
Maisiek

Exciting ! I’m tempted , having Got down to 5mg but shoulders quite painful. I started at 15, I wonder if I should go back to that?

HeronNS profile image
HeronNS in reply to Maisiek

If the shoulder pain doesn't respond to the usual otc painkillers it sounds like it might be a PMR flare. You could try 10 mg, which at your current level is double your dose, and see if that is enough. Despite what the person posting is suggesting it really isn't a good idea to take more than you actually need unless, like MarkyMark60, you've tried everything else and found this helped. By the way, what level were you at when the shoulder pain started to recur? When you go back down from your extra dose you may consider it a good idea to stop just above that point. I do have concerns when people need to repeatedly deal with flares. It sounds very like they are not taking enough pred day to day to manage the PMR activity, or else flares would be less likely.

Maisiek profile image
Maisiek in reply to HeronNS

Thankyou : that reminds me that I sometimes need otc painkillers at some points in my reduction : will try that first.

MarkyMark60 profile image
MarkyMark60 in reply to HeronNS

Why are we so afraid of using 20 mg of prednisone for two days and then 10mg another two days and then back to maintenance dose. If you are under 8 mg of prednisone on a maintenance dose your adrenal gland is working and it just may need a quick boost

HeronNS profile image
HeronNS in reply to MarkyMark60

Would you accept that a similar technique using a MUCH LOWER pulse dose might be just as effective for the purposes you are using it for? It makes no sense to me to advise someone who has never taken more than 15 mg to try this relatively massive dose - especially when you are tapering at the very low levels. I can't even imagine tapering from 2 mg to 1.5 mg with several days of 20 and 10 in between! Why? If it's hard to taper, then it's too soon or too fast. If anyone wants to try this I suggest it should be a last resort when more conservative methods have consistently failed. Bearing in mind there can be a lot of reasons it's difficult to taper including the possibility PMR is still active enough to need a certain amount.

MarkyMark60 profile image
MarkyMark60 in reply to HeronNS

I totally agree with you that we should only do what we are comfortable with. But I disagree with you as to the cause of the pain when tapering from low-dose . My rheumatologist told me that the pain is from reducing the prednisone not from PMR. Your assertion that when you reduce on low-dose prednisone to a lower dose that if you have pain it’s from the PMR I feel is incorrect. The pain is from the drug.

HeronNS profile image
HeronNS in reply to MarkyMark60

That is true. But it's also true that PMR isn't cured by pred, only managed, and the disease has to burn itself out in its own good time. Pred withdrawal pain tends to occur soon after a reduction and go away over a few days as the body becomes accustomed to the lower dose (that's why so many of us find the slow reduction plans so helpful) but if PMR isn't going into remission and you happen to need whatever the dose is, be it 8 mg or 3 mg, then eventually the PMR pain will start to recur as untreated inflammation builds up again. I think as DadCue points out the method you describe is used for other conditions, pred is used quite differently for other conditions than it is for PMR, and I'm pleased for you that it seems to be working when other methods didn't. But it is an unusual way to manage a PMR taper.

MarkyMark60 profile image
MarkyMark60 in reply to HeronNS

I agree with you. The prednisone reduction pain is what I’m talking about not a full blown flare up. I don’t know about you but the reduction pain feels just like a flareup to me. 👍

PMRpro profile image
PMRproAmbassador in reply to MarkyMark60

You don't actually know that - 8mg is the level at which adrenal function must START to return. We have several members of the forum who had reached below 5mg before a synacthen test showed they had poor or no adrenal reserves. One lady was feeling well at 2mg pred - and had absolutely no adrenal function. A study in Leeds UK has found that far more patients than it was thought have difficulty in regaining adequate adrenal function. And actually - it isn't US that are so concerned about that approach which shouldn't be required if you are ready to reduce. It is rheumatologists and GPs who are terrified of using a mg more of pred than required.

And after many years involved with PMR and tapering I disagree fundamentally with your rheumy who obviously has some strange ideas about the mechanism of PMR. If you reduce to a dose that is too low to manage the inflammation created by the ongoing activity of the autoimmune part of PMR then you will get a return of PMR symptoms.

Mary63 profile image
Mary63

That’s interesting. Thank you for mentioning.

HeronNS profile image
HeronNS

Have you ever tried the same technique with a much lower spike dose? Many of us have never needed as much as 20 mg ever, and certainly not since the beginning of the journey. The standard method to douse a flare is to increase a dose by 5 mg for a few days then drop down quickly to a level just above where you flared.

Linny3 profile image
Linny3 in reply to HeronNS

I have not needed high doeses (usually) when I have a flare but with this recent flare I had to go to 20mg to get it under control. I can't try anything new until I feel it is under control.

Coffeebeans profile image
Coffeebeans

That's interesting, always useful to have something else in the toolbox.

I do hope you have a less exciting year health wise this year for sure.

greengages profile image
greengages

That’s very interesting and will keep it in mind as starting to taper again after a flare

PMRpro profile image
PMRproAmbassador

Seems a strange idea - once you are at lower doses it is the same effect on the cumulative dose as beign a month behind - and that alone often makes a difference. If you can't reduce without doing it, it does suggest you are very much on the tipping point.

MarkyMark60 profile image
MarkyMark60 in reply to PMRpro

Has anyone ever considered that the reduction pain on the low-dose prednisone is a result of the prednisone not PMR. This is exactly what my rheumatologist told me why every time I reduced from 8 mg of prednisone down that I was experiencing neck and shoulder pain. To prove it I had a sed rate and C reactive protein test and they were all normal even though I was getting the pain.

123-go profile image
123-go in reply to MarkyMark60

Am I missing something something here?Test results are a very good guide but aren't always totally reliable. It's well known that symptoms 'rule' over test results. Prenisolone manages inflammation and thus reduces pain. If you reduce to a dose where pain increases-in your case below 8mg- you need to up the dose to where you last were pain-free and then taper very slowly from there. Surely this proves that Prednisolone doesn't cause pain. I've never heard of Pred causing pain in PMR patients. I have to say that I feel your rheumatologist is misguided. I'd be interested to know what level of success he's had in treating PMR.

Harrywogan profile image
Harrywogan

Thanks for that advise will keep in in m ind when I reduce again. HARRY.

Linny3 profile image
Linny3

Thanks for the idea. I have tried everything else so I will give this a try now.

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