Is this my new normal?

Hi the treatment in US seems different to UK.When rheumatologist here put me on pred 12yrs ago once diagnosed the procedure was 20mg a day for a week then 17.5ng a day for a week then 15mg a day for a week then 12.5mg a day for a week then 10mg a day for a month then reduce by 1mg a month going back up for a month if symptoms recur before doing the slow drop again.This gives a minimum of 9 months and often at least 2years of treatment before remission.In my case 12years on I am in the middle of my fourth major flare up-but may not be typical.Good luck

Hi Annie,

Sorry to hear you are in pain.

I think it depends on the Dr. I am in the US and was started on 20 mg. I felt great within a few days, no pain at all, except a frozen shoulder. This went away after doing physical therapy. That was December 2013. Am on 5.5 alternating with 5 and still feel good.

I think the correct dose is the one that controls the symptoms. 

That Drs don't have a clue is an understatement. I spent 4 months trying to find a Dr who could help me: Internist (several visits and bloodwork), 2 Orthopedists (several visits), 1 rheumy, who misdiagnosed me after performing all kinds of blood tests. Since the meds he prescribed did not work, I kept looking for a different Rheumatologist and finally found someone who helped me.

Maybe you can ask your Dr to give you more Prednisone to see if a larger doses helps.

All the best,

Paula

Hi Annie- I'm from the U.S. And that is not what they do in U.S.! I was put on 20 mg to start and this is the norm. Do not remember the gradual reduction...those experts here will fill you in, as this forum is a godsend to those of us suffering from this annoying disease. I wonder if you have. rheumatologist ofr this is a GP tending to you. Get a Rheumi or if this is one - get a new one! If this is his knowledge of PMR than you are in for a bumpy ride! God luck and I hope this is a very short ride!

I was started on 15 mg and it was a miracle - truly.  However my doctor's recommended reduction has proven to be far too rapid and now I have to deal with that mistake.  So just a heads up - once you find a dosage that controls your symptoms, don't be scared into trying to come off the steroids too quickly.  You will only end up having to increase your dose again when the symptoms flare up.  There are ways to control possible side effects.  In my case I'm pretty healthy other than this disease, so I have been taking lots of walks, doing my physio exercises, eating as healthfully as I can, and now trying to restrain myself a bit and get lots of rest.  Because that is the other thing, when you feel better after being in pain for so long it is just so great to be able to do a lot of things, one does tend to overdo it!  All the best.

PS I'm in Canada.  All the good info I've found on the Internet originates in the UK.

Hi,

Believe it or not, I was put on 60 mg per day by my US doctor.  I don't think I've ever met anyone that was put on that high a dose (unless they had GCA), but within 24 hours I felt like a normal human being -- almost totally symptom free.

I quickly weaned myself down to 15 mg per day -- I forget how long it look.  I've been following the very slow reduction scheme that others are on and now I'm down to 8 mg per day.

I am still achy, especially in the morning.  But the achiness has not increased as my dosage has decreased.  I will continue the slow reduction scheme as suggested here because it works.

It also seems that the UK has some very standardized ways of handling almost everything, while we here in the USA do not.  I see both advantages and disadvantages of the standardizations.  First, there are always exceptions.  Secondly, sometimes the standardized ways are not good enough.  But in the case of PMR, it seems that the UK has standardized on a very effective way of dealing with this condition.

My doctor has been great in that he's willing to LISTEN to me as I share what I've learned here on the forum.  He even frequents the forum himself.  

It might be worth a shot to mention this forum to your doctor.  He's roll his eyes until he actually visits this site.  Any doctor who does not appreciate this site (not just this forum but the whole site) is not worth seeing in my opinion.

All the best,

Hello anniecurd, the normal treatment plan in England is 6weeks 15mgs, 6 weeks 12.5, then anything up to a year at 10mgs. From 10mgs many of us on this site then follow the dead slow and almost stop reduction method, but you have a long time before you get the there.

when we are first diagnosed with PMR very often many of us have been suffering the pains and stiffness of PMR for months so we are given 15mgs and kept on that amount because that 15mgs has a lot of work to do, and so that's why it is important to stay on that amount for 6 weeks. Not only must it round up all the existing inflamation but it then has to keep it under control, a hard and very important job. All the other doses are used simply to keep whatever inflamation is left under control. 

In my opinion 10mgs was not enough of a dose for you and so it is only controlling most of your pain but not it all. I would up my dose to 15mgs and stay there for at least 1 month, then reduce as above. Look up the Bristol PMR plan. This plan and information was written by experts in this field and this method us classed as gold star streatment.

the reason why many of us then adopt the dead slow and almost stop method is because as we go through the lower doses a straight reduction of 1mgs is simply too big a reduction and there is the potential of a flare, which is something we all try to avoid.

you know when you are on the correct dose when you do not experience a flare, yes it's as hit and miss as that, so that again is reason why it's important at the lower doses (10mgs) to reduce by only .5, as little doses are not as severe on our bodies than a whole mg.

our PMR journey will be a long one and often anxious one so it is important that we approach this with all the info we can and unfortunately even in England I'm am shocked by patients who visit this forum with their tales of totally inappropriate information and a less than useless care plan given to them by their consultants! All the best, regards, tina

My Primary doc first sent me to a rheumatologist who started me on

l0mg.  Can't remember why but went back to my Primary guy and he

immediately put me on 20mg which I think is the usual beginning dose.

I had sed rate done every 3-4 weeks and actually got down to 4mg

before sciatica attack knocked me on my butt and sed shot back

to 60.  If l0mg is not working you need to tell him and ask for

at least 20mg to start........you'll know when the pain is gone that

20 is correct dosage to begn.  BTW  I'm in the U.S.

And yes this forum is great for info.....