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
I am sorry to read that you have a flare. I managed to get down to 1.5mgs but realised I had overshot my optimum level so went back up to 3 mgs and managed not to flare. It may be that you found a level where you were comfortable. Did you use the DSNS method? I would be inclined to go back up to at least 5mgs but others may suggest 10 mg for a few days to clear the flare and then proceed to reduce again to reach a level where you feel comfortable. It is better to remain at that level until you feel you are able to reduce following the DSNS level. I will be on steroids for 3 years at the end of May. It is not a race to zero as most of us realise and when we reach lower amounts there is not the concern that there is with higher doses. Others who are more knowledgeable than I am will be along to give advice. I hope you feel better soon.
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.
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.
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....
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.
Sorry.l!.to reiterate..i went back up to 7mg and pain was managed..now down to 4mg after three month 1mg tapering and pain ok...
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.
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.
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...
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!
Hi Bob, I’ve had PMR 6 years. Had trouble getting below 7.5 flared several times then mtx was added. Went below 2mg couple months ago and after a couple weeks PMR pain started returning so I went to 2mg. And that seems to take care of it. Dr says to stay at 2 and slowly wean off the Mtx. She said I may be on the 2mg for a long time. The side effects are minimal she said and a flare is not something I want. I have a sister that has sarcoidosis and has been stuck at 4mg for years. Take care,Geo.
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.
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!
IT gets harder
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
To all that have responded to my question....
THANK YOU.
I've upped my dosage to 2.5, and that seemed to help a bit. But I'll probably take Eileen's (and others) advice and go up to 5 mg for 2 or 3 days to really get on top of this.
Again, so much thanks.
Good to read that you have improved with the extra mg. I found that I needed to go to 3mg and it worked for me without having to go to 5mgs. I have remained at 3mgs for some weeks now with no more pain except when I go out in the cold without enough outer layers. A cautionary reminder and I probably foolishly will not follow that reminder.
Thank you Bob, I appreciate your reply.
Do you mind telling me what the slow taper method is? ie: how many mg at what rate? thanks
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.