THE TWO YEAR PMR MYTH

This might help you.  https://patient.info/forums/discuss/dead-slow-nearly-stop-plan-to-decrease-pred-dose-295902

The best guidelines keep someone on the initial dose (if it was successful in treating the symptoms) for at least four weeks before starting a taper of no more than 10% at a time.

You will never get anything under control like that Lynda. PMR is not like a chest infection or asthma where pred is used for a few days to get the swelling down and then reduced quickly. It is a chronic illness that lasts anything from 2 years to life - and on average over 5 years. Everyone arrives believing they are different, they can get off pred and be well just by determination and forcing the reduction. It never works. 

It's more like at least 3 weeks at 15mg you need, not 3 days. Then another 3 or 4 weeks at .12.5mg. You cannot reduce more than 2.5mg every few weeks above 10mg - and most people can't manage that. Below 10mg the reduction rate should not be more than 1mg per month - trying to do quicker than that is predictive of flares. When you have a flare you usually need more pred - that you wouldn't have needed if you had gone about sensibly

Yes, we all appreciate you want to get off pred asap but the only thing that can keep you out of pain is pred - and pred at the right dose.You find that right dose by going about it carefully - not like the proverbial bull in a china shop. You have to clear out the mess of inflammation and then find the lowest amount of pred that stops it mounting up again. The only way to do that is to start with a higher dose and creep down, allowing time between reductions to be sure it is still enough. It doesn't work by creeping up - there is still too much inflammation present to know what is enough tostop the increase.

To be honest - if you aren't willing to accept that view of PMR then you might just as well stop taking the pred altogether quickly and put up with the pain and disability. There are no ifs or buts - PMR is a painful and long lasting illness that responds very well to pred to keep you relatively pain-free. But only for management - there is no cure.

This may sound like a dumb question but, when u folks say u take 15mg (or whatever) do you take it all at same time or divided up through the day? My rheumy told me 2 take it all in a.m., but it seems to work better 4 me if I divide it. Doc. wasn't in 2day😠 so I've elected 2 stay on 9-9.5mg. on my own! This time I'm gonna stick w/same dosage for remaining Aug. Wish me luck!

Not a dumb question at all - no such thing, just silly answers! I hope this isn't one...

The received wisdom from the medical community is that it should be taken all at once in the morning. This is based on a study that found taking 5mg in the evening suppressed adrenal function more than taking 15mg at 8am. That makes sense in using pred for short courses - as is normal in many things, chest infections or asthma for example, it will make stopping it easier. It is also felt to make side effects less - your body has longer free of pred which is a good thing, and it may interfere with sleep less as there is a big gap. That said, many people take pred before bed and sleep like babies, avoiding certain side effects which were a problem for them.

However, when you take pred at the doses we do for as long as we do there will be adrenal suppression - it is unavoidable. So it makes sense to use your pred in the way that manages YOUR symptoms best - everyone is different and different things work best. The antiinflammatory effect of pred lasts between 12 and 36 hours - if you are at the 24-36 hour end you can take your pred once a day and will be fine until the next dose. The others for whom the effect doesn't last the full day will probably find they do better by splitting the dose. The most usual option is about 2/3 of the dose in the morning, the rest later in the day. How much later varies - but a couple of hours before you would expect the pain and stiffness to return makes sense. 

You also have to work out where best to reduce the doses - some people reduce just one, others reduce less on each. Again, how to use the pred and reduce the dose is a bit of an experiment. And often it is a good idea to try something, it usually only takes a day or two to see if it works for you, and then suggest it to your doctor at some point and test their reaction. Some will go ballistic because they "know best", others would suggest it themselves anyway. But maintaining a decent relationship with the person who writes your scripts is advisable!

Thank you so much Eileen! As usual, your answer was very informative. Good advise about maintaining a good relationship w/Rheumy! I think for the time being I'm gonna continue to split my dose as this does seem 2 work best 4 me. I am, however, going 2 continue the same dosage throughout the month of Aug. and take it from there. I swear, this sweating has become a HUGE problem, especially my scalp! I can't seem 2 cope w/temps beyond 70o! Anything higher and my scalp starts to literally DRIP perspiration. So worried about my flight 2 tx. in couple wks!

Another question...I used to think I was "drooling" in sleep as I would awake with a wet cheek. Now I'm relatively sure I'm not drooling at all and that it may be sweat on my cheek and chin from heat. I don't know, I'm kinda grasping at straws with all these new symtoms I seem 2 be having. I've never been a "drooler" before which is why I'm curious. Anyone else experiencing anything similar??

Major correction! Just realized (as I started 2 drift off to sleep) that I must be drooling. But my mouth seems to fill w/saliva so quickly, I don't understand. Again, I've never been a drooler before so I'm wondering if this is yet another wonderful side effect of prednisone? Ughhh!

My GP is special and the Health Center is very accommodating to all in my small, computer savvy, Oregon town.  When he mentioned reducing pred after two years, I commented that he must not have seen the latest 2017 Mayo Survey on PMR and Pred. which I later sent to him.  I have sent eight more on various subjects and some of Elaine's wonderful descriptions and opinions.

Google Search sends me news articles that mention PMR.  A few have the 2 year reference as to the length of this disease.  I have started sending emails to whatever address I can find to insist that they update, retract, incorrect information on PMR.  I send them the latest survey as an attachment and/or paste-in and describe myself as a 3 year PMR patient. 

By the way, I will be 80 this month.  Wish I had my mid 70s body but I can still walk to town and back and also walk the dog and climb many stairs with one knee replaced last year, all on 9 1/2 going on 9 mgs after suffering a relapse last month (7 to 15 mgs and then down to 13, 12, 11 and then 10).,. 

Good for you!   Keep sending those emails.  It’s about time doctors and rheumies wake up to the fact that PMR takes longer, and sometimes MUCH longer, than two years.  💐💐💐