I was on my way happily going down from 10 mg of Prednisone but when I got to 7mg reducing to 6 mg of Prednisone, my body gave me too much pain. Misery became too much so had to go to 8mg where I felt pretty good before but that did not work so had to go to 10mg. NOT WHAT TO DO? Been on the 10 mg for 1& half weeks & feel great but of course want off these darn things! How long should I stay on the 10mg before trying to taper down again? When I hit the 8 mg mark, I was planning on doing the nearly stop method this time. Is my plan appropriate? Please advise.
Hello Joey
The important thing to know about steroid taper is that it needs to be done very very slowly. My Rheumatologist stressed this and told me to reduce the dose by 1 mg at a time for a period of 1 month at a time. So from 10 mg to 9 mg for 1 month then 9 mg to 8 mg for 1 month and so on.
Make sure they are treating you for the right disease. is your calcium in the normal range? If not, you could be suffering from Primary Hyperparathyroidism which causes many similar symptoms. Would be wise just to rule it out. Otherwise the above taper is the one that is the most sensible.
Hope you feel better soon, the symptoms are so debilitating.
Hello Joey
It's tough when you hit a wall. I found it easier to do the dsns method by reducing only by .5mgms each time. I am down to 5mgm.
I have had pmr for 2 1/2 years. Anyway just a suggestion.
Good luck
Caroline
in addition to slow reduction, keep in mind 10% rule. As you go below 10mg, especially as you approach 8mg and below, it is better to use 0.5mg steps. I am about the same level ( currently reducing from 7 to 6.5mg). I use modified DSNS method, which starts with 4old dose 1 new dose, 3 old 1 new, etc... Every time I start transition, there are some nagging pains, BUT what is important, is that discomfort gets better with time. If it does not, then I stop at DSNS stage that I have problem with ( say I am at 1 new 1 old dose) and back one or two steps in that process ( for example, I would go back to 2 days old, 1 day new) and stay at that level until pain goes away... and then continue DSNS steps...
It this it is extremley important to monitor your body response and recognize when to slow down.
Love your bringng up primary hyperparathyroidism. In 2009, I got tired with it and had some brain fog. Removing that little tumor helped tremendously. Except in 12/2015 I was diagnosed with PMR. Yay!
Thank you Rosemary. Good idea but I did have my Thyroid checked and it was OK
Thank you so much for your advice Nick. I think you are speaking about that Nearly Stop Method (DSNS).......
I remember copying it....but not sure if I copied correctly. Doesn't seem right to me but then on Prednisone I am forgetful & make mistakes. Is the following list correct to follow when needed to reduce by half additions around 8mg Prednisone?
from 8mg to 7.5mg Prednisone……On the first day of reduction of this Nearly Stop Method, take 7mg + half of a 1 mg Tablet as your new dose. Then on the next 6 days, take 8 mg as your old dose as seen below.
1 day new dose, 6 days old dosage
1 day new dose, 5 days old dosage
1 day new dose, 4 days old dosage
1 day new dose, 3 days old dosage
1 day new dose, 2 days old dosage
1 day new dose, 1 day old dose
1 day old dose, 6 days new dosage
1 day old dose, 5 days new dosage
1 day old dose, 4 days new dosage
1 day old dose, 3 days new dosage
1 day new dose, 2 days old dosage
1 day new dose, 1 day old dosage
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
Thanks again everyone. Bless your hearts for the time you take to answer desperation! Than goodness we have this Forum!
Thank you Caroline. I too am at 2 1/2 yrs with PMR
Hello joey, when you had these pains whilst at 6mgs I believe that, providing these pains worsened each day, this was the beginning of a flare and you did do precisely the right thing and upped to 10mgs. When you have the beginnings of a flare it is correct to leap on top of it straight away and sometimes that is only achievable by upping by a large margin.
personally I this happened to me, I would stay on 10mgs for 4 weeks, then reduce to 9.5 for 4 weeks, then 9mgs for 4 weeks, then 8.5mgs for 4 weeks then 7.5mgs for 4 weeks then 7mgs for 4 weeks then adopt the dead slow and almost stop method of reducing further. I have adopted a form of the dsas method and only ever reduce by .5mgs. I am presently at 5mgs and doing very well.
The only reason why I suggest adopting the dsas method at 7mgs is because you were fine at this level and the problem appears to be reducing from this dose, but to begin at 8mgs would be good too.
You say that you want to get off these drugs, well we all do, but this flare is proof that if you reduce to much, and I believe 1mgs reduction once you hit the 10mgs mark is too much, risks a flare and a flare always results in upping the preds, so that means you'll actually be on the drug longer, so slowly slowly catchy monkey is always better.
all the best, tina
This is the posting by PMRPro who developed this particular reduction plan:
I have been asked by two or three people on another thread about this reduction. Because of the way this forum works I thought it was simpler to just start a new thread so it is obvious where it is - I've posted it several times already but there is no real way to find it again that I can see. It is long to try to make it understandable - those of you who use word processing will be able to copy and paste it into a file on your computers to read again and again.
"Reducing pred: dead slow and nearly stop"
In an attempt to make this reduction scheme available more simply to the people who request it I am posting it here where it can be found easily. I hope noone minds but I have copied and pasted it what feels like dozens of time!
"A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.
The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.
When you are at doses below 5mg it is a good idea to rest at each new dose for a month at least before trying the next reduction. At this point you risk overshooting the dose that is controlling the inflammation so waiting a short time to see if symptoms reappear is helpful. If you just continue there is a possibility that you get to very slightly below the "right dose" and inflammation will start to reappear very slowly. The blood tests will lag even further behind the dose reduction - there must be enough inflammation to increase the proteins being measured for the blood tests to rise.
Contrary to the beliefs held by many doctors it is NOT a race to reduce the pred dose. Doing that will lead to flares, needing to go back to a higher dose and starting again - and the end result is you took MORE pred than if you had reduced more slowly.Last edited by PMRpro
Started at 15 mg last JUne, on taht dose for 5 weeks, then following doctor's instructions reduced be 1 mg per week. I encountered pain at 9 mg, went back to 10 for a couple or three weeks then, with GPs's blessing, started the dead slow reduction plan. With some minor tweaking on my part as I respond to my body's needs and capabilities I am now around the 3.5 mg mark. It has taken about eight months to accomplish this but, as they say, it isn't slow if it works. At this stage I would never drop by a whole mg, but go by .5 mg, although I have also been able to drop a second .5 mg halfway through each dead slow taper to actually accomplish a full mg each time. I stay at the new dose for a couple of weeks before starting a new taper. At first I used a four day sequence, now I'm using the full six day start stop, and even doing the six day one a couple of times if I sense resistance. Just a question of cautiously prodding until finally the taper "takes" as I think a lot of the discomfort I feel at the start of a taper is pred withdrawal rather than PMR and I need to let my body get used to the new dose very carefully.
Hi there Joey , I recently had a flare and my markers were raised, i went up to 8mg for 2days it was slightly better so i went up to 10mg for 2days , then 9mgs for 2days and now 8mg for 2days, i shall continue this until i reach 4.5 which is where it all began, if im lucky it will work otherwise it will be up again i think. Good Luck
Hello Joey
I just typed you a long post and suddenly I lost it all, bother ! Anyway in a nutshell I(sort of), here goes again.
I was actually talking about the parathyroid glands (4 glands the size of a grain of rice normally located behind the thyroid). The thyroid deals with metabolism in the body and your doctor would have measured your TSH level (thyroid stimulating hormone). For the parathyroid glands, they measure calcium and PTH (parathyroid hormone).
Every cell in the body needs calcium and the parathyroid glands regulate the level of calcium in the body to within a very tight range. If it goes too high or too low, it causes lots of nasty symptoms some of which are similar to PMR. The high levels of calcium and PTH are caused when one (usually one) of the little glands grows a benign adenoma (tumour) on it which then needs to be removed so the levels go back to normal.
When I first had the symptoms of Primary Hyperparathyroidism (PHPT), I was misdiagnosed with Polymyalgia. Some of the symptoms are similar, particularly the severe muscle aches, pain rising from a chair etc.
I was put on steroids (Prednisolone) for a year before they finally realised their mistake in diagnosing me with PMR which made my actual condition a lot worse. I had a bone scan which showed I had osteopenia (thin bones due to loss of calcium) and PHPT always leads to osteoporosis and can also cause kidney stones in some people altho luckily I did not have those. It also causes chronic fatigue as well as loss of concentration and memory because the high level of calcium affects the central nervous system.
Initially they gave me 5 mg Pred before they diagnosed PMR to see if it had an effect. Prednisolone only has a physiologic effect at 5 mg and above and initally it did take the edge off the pain so they assumed PMR. But as soon as I tapered off, the symptoms became severe again. All the Pred did was to mask the symptoms (but it also took calcium out of my bones as well as the PHPT disease so a double whammy). Steroids are great if you have the right disease!
I just wanted to mention it as you said you are having trouble coming off the steroids. It might just be worth having your calcium and PTH levels checked just to make sure that your muscle aches are definitely due to Polymyalgia and not what I had. Excess PTH in the body leeches calcium from the bones and puts in the blood making you feel ill, tired, achy - there are 21 different symptoms which people can get with Primary Hyperparathyroidism.
Either way both diseases have very unpleasant symptoms and I really hope that they did make the right diagnosis in your case because I suffered a LOT before it was diagnosed correctly and it cost me my job in the NHS as I was so ill.
I wish you all the very best and hope you will let us all know how you get on.
Kind regards. Rosemary
I'd be tempted if I were you to taper much more slowly as you don't want to be getting into a yoyo situation. As we often say, "It isn't slow if it works" and better to be successful even if it takes a month or two, than have to go up again.
Hello Candace
That's very interesting. Were any of the symptoms you had in 2009 similar to the ones you developed in 2015? Have you had your calcium and/or PTH tested recently? Are you certain it is not the start of PHPT again? There could be a possibility that they missed a 2nd little tumour in 2009. Also there is such a thing as all-gland hyperplasia.
It would be very interesting to know a bit more about your medical journey in 2009 leading up to the tumour you had removed and what symptoms you are having now, that's if you don't mind sharing, thanks.
Kind regards.
Rosemary
After reading your long post i am seriously considering it but am very worried i will get in a muddle, how is the best way of rcording this do you think, I was decreasing by .5 monthly till i got to 4.5 when the problem started
Just wrote a long post which I managed to delete by pressing a wrong button. Main point - write your doses down ahead of time in a small daytimer which has a page a month, but space for every day. USE PENCIL and pay attention to your body. I tweak the taper all the time, sometimes speeding up slightly, sometimes slowing down, in response to how I feel, although I should emphasize that in general I keep pretty close to the plan outlined.
Also because you are returning to a successful point, you most likely can use that 4 day start finish for the next couple of tapers.
Anhaga, when I got to the 3.5 dose, I started reducing by 0.25 using the dsns method, Only problem was trying to cut the damn 1mg pills into quarters!! Still, am down to 2.25/2.0 now. . . . . J
I was thinking about that, and the pill cutter I have isn't accurate enough.