Posted , 15 users are following.
Hi all,
I've had PMR for about 3 years. I started with 60 mg/day, and got myself down to 1.5 mg. Symptoms have been gradually reappearing, and now are almost as bad as they were when I started.
Please advise on how many mg to use in response to this flare.
You've all been so excellent. This forum has been my lifeline.
Thanks
1 like, 24 replies
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Silver49 bob73443
Posted
bob73443 Silver49
Posted
Thank you so much for your response.
Yes, I have been using the DSNS method and it has worked marvelously.
On one hand, it should not be a race to zero. I wish the docs would understand this. I do feel very fortunate to have achieved 1.5 (and sometimes even 1.0) before this flare-up. I understand that there's not as much concern at those lower levels.
I only took 2.5 mg today, before I read your note, so I probably didn't take enough. If I don't feel any improvement, I'll take 5 mg tomorrow and hold it there for a few days. If that doesn't help, I guess I'll go to 10 and then start the journey down again.
Whatever is my fallback number (5 mg or 10mg), would I have to start the DSNS method again at the point -- or reduce more quickly to, say 2.0?
Thanks for your help.
mary19068 bob73443
Posted
Silver49 bob73443
Posted
If you need to go back up to 10mg then I think you could try coming down 1mg at a time to 5mg and then follow the DSNS method but if you find you are flaring then I would be inclined to follow the slow method sooner. As soon as you reach a level where the pain starts to come back stay there for a while. I don't know where you are in the world but I found this cold snap we are having in Scotland caused a bit of pain. As you probably know stress can also cause pain. Have you had a recent stressful time? It may just be that you passed your optimum level and have nothing to do with the former.
bob73443 Silver49
Posted
If I come down 1 mg at a time to 5 mg, how fast should I do that? 1 mg per day down to 5?
I'm in the eastern part of the USA. Unprecedented cold weather. Not sure if that's what triggered it. I think I simply met my "maintenance level at around 2.0 mg / day, and tried to go beyond it.
Thanks for all your help.
Silver49 bob73443
Posted
I think I would give the 1mg a few days. You'll know very quickly if it's too much. It's very easy to pass the maintenance level and I did the same but caught it quickly. I think from what you are saying that you know your maintenance level. Presumably it was when you went lower the problem started with pain.
It will be much colder with you than it is here. We are about to have a mild spell which will possibly cause flooding where there has been a lot of snow.
I'm hoping the more knowledgeable people will come along with their advice to help you.
mary19068 bob73443
Posted
Hi bob73443
Sorry you are having a flare after doing so well. When i had flares after tapering very slowly, i went back up 1mg at a time every 3 days until i reached my comfort zone and stayed there for a month then tapered again slowly. I have now got to 7mg and the pain wad managed. I'm now back down to 4mg and pain still ok...hope this helps....
reggie92967 bob73443
Posted
Hi Bob, Slkw, slow, slow, small, 1/2 mg. increases is what my Dr's. advise for me. I tried to increase or decrease too quickly & it was ugly. I was DX'd with PMR 3.5-yrs. ago & on prednisone ever since, yuck !! But it does help my PMR symptoms & keeps me from being a total invalid. I've been as high as 60mg. & low as 6mg. But, at 7-7.5, I feel all the symptoms coming back on harder. My local Dr. & Rhuematologist feel 10mg. is my good #. I still suffer allot of fatigue, much stifness, & overall body pain, & other symptoms. I describe my pain like a tootache of the body, dull ache, throbbing. But I do have a drastic reduction in all symptoms with the 10mg. Neither Dr. are worried about reactions, side-effects, the long-term one's, with onging, longterm use of 10mg. or below. They say with 10mg. I shouldn't be prone to some of the real severe effects of more high dose prednisone. I wish I could go higher & get allot more relief, but just can't, prednisone side-effects come on too strong. Before my DX of PMR I was in much more pain, so fatigued & weak I wasn't crawling out of bed until 1:30--2:00 in the afternoon. I'd then be so depressed due to feelings of worthlessness, unable to even get in the shower, shave, brush teeth, etc. Let alone accomplish any work. The simplest, take for granted things, were like climbing a mountain. I hope & pray the 10mg. continues to help. Best to you ! Reggie A.
EileenH bob73443
Posted
I would start by adding 5mg/going back to 5mg, not much difference really, and see how that goes. If it doesn't work in a few days try a few days of 10mg and back to 5mg straight away.
The problem is knowing whether you have overshot and caught it quickly (though obviously not quickly enough) or whether this is an increase in the activity of the underlying autoimmune disorder in which case you will probably need a higher dose to manage the symptoms.
In Germany they actually have a bio-weather forecast, telling you which disorders will not be benefitting from the next day or two! Cold and damp both figure for rheumatic disease of any sort...
Anhaga bob73443
Posted
Eileen's advice about going to 5 mg for a few days is good. Don't try less. I made the mistake of not following a doctor's advice to go to 5 when I was starting a flare, and after messing around with lower doses I ended up at 7 for a few days and what I think has turned out to be a much harder to control flare than it needed to be. Coincidentally I've had a PMR diagnosis and been treated very close to the same time frame as Silver, plus also got to 1.5, and am now trying to get to 3 by DSNS after that little adventure at 7 mg a couple of months ago. It was relatively easy to get back down to 4, but since then it's been harder. And yet not much less than a year ago I thought I might be heading to remission. So we can really take nothing for granted on the journey.... Good Luck!
1951grumpa bob73443
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margot34956 bob73443
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Hi Bob, I am sorry to hear your symptoms have been reappearing, I so hope you don't need to start again.
I don't know enough to know how to taper. I am interested in that you say, you got yourself down, do you mean that the Doctor wasn't advising you? did you take control of the tapering?
I am wanting to do that, I was diagnosed in Nov 2017, and am now on 10mg, I would like to taper myself down.
I hope you will not have to start again.
Anhaga margot34956
Posted
You were diagnosed two months ago and you are on 10 mg now? Unless you were misdiagnosed and don't have PMR at all I think it would be very unwise of you to try to speed up the taper. I does get harder the lower you get as each reduction is a larger percentage of the dose.
However, your doctor should allow you to taper at your own speed, which usually means a little slower than the doctor wants!
Anhaga
Posted
bob73443 margot34956
Posted
Margot,
My doctor has been great. I told him about the slow taper method, and shared several of the related threads on this forum, and he more-or-less has given me control over my condition. He trusts me. He knows that I probably know more about PMR than he does at this point.
Of course, he's an MD, so he wants me to go to zero. We differ in opinion as to whether or not that will be possible. I certainly DO want to go to zero, but not at the risk of re-inflammation.
All the best to you
margot34956 bob73443
Posted
Do you mind telling me what the slow taper method is? ie: how many mg at what rate? thanks
margot34956 Anhaga
Posted
Yes 2 months ago I was diagnosed, symptoms were very painful muscles and joints especially in the mornings. I had the blood tests and the CRP was 75. Started on prednisone and 70% of the pain has gone. I have a Doc appointment tomorrow and hopefully she will allow me to taper at my own speed. Though I don't know how.
EileenH margot34956
Posted
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
In the replies section of this thread is a slow reduction scheme which has helped a lot of patients on the forum to reduce without flares or withdrawal symptoms - which are so similar to PMR you don't know which is which. It may LOOK slow, but it isn't slow when you don't end up going back to the beginning because you allowed the symptoms to flare. Reduction steps should not more than 10% of the current dose - although between 20 and 15mg most people manage 2.5mg reductions OK and it is worth trying - if it works that is good. But then from 15mg it really does pay to be careful! If symptoms return, stop reducing and go back to the last dose that you were good at, wait a few weeks before trying again. Your guide is how you are at the starting dose which you need at least 4 to 6 weeks at to be sure the inflammation is cleared out. You are reducing to look for the lowest dose that maintains that state - every morning a new batch of inflammatory substances is shed in the body and you need your daily dose of pred to clear that out. PMR lasts from 2 to 6 years for 75% of patients - there is no fixed time, there is no fixed dose, everyone is different. Any doctor who tells you you must get off pred asap because it is dangerous doesn't know the way PMR works and should be avoided!
ABout 2/3 of the way down that link I gave you is a link to a new study about the effects of steroids (Polymyalgia Rheumatica and Steroid Side Effects: New Findings) - it is well worth having a copy of the article to share with your doctor if they try to tell you pred is dangerous.
bob73443 EileenH
Posted
Eileen,
Margot asked me "what is the slow taper method." I'm using the method you taught us. I have created a spreadsheet which tracks how much pred I'm supposed to take each day, based on you "dead slow"? method.
I thought this was one of the links that were on the page you referred to in reply to Margot, but I don't see it there.
Doesn't such a link exist?
Thanks
Anhaga bob73443
Posted
I agree it's a bit confusing. The method is actually the first "reply" to the moderator who listed all these links in a post. The rest of us need to remember NOT to reply to the moderator's post, as if it were an ordinary discussion, so that it retains its usefulness.
EileenH bob73443
Posted
There is a separate post about it:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
which is one of the pinned posts on the front page of the forum:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
Does that make it clearer and help with "how to find it"?
margot34956 EileenH
Posted