Hi Everyone,
my dr put me on 10mg of pred last Wednesday for PMR, and told me that I'll feel great. Well I don't. In the morning I'm still pretty achey and stiff. It usually takes until the afternoon before I feel better. Is this normal, would this still happen if I was on a higher dose? Some of you said that 10mg is too low to start with, but it seems to be what they do in the U.S. I guess my questions is, would it help to push for a higher dose, or would I still have the morning pain until the pred kicked in? How do you know when you're on the correct dose?
it really helps to read about other people's journey with this, doctors don't seem to have a clue.
thank you
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.....
Interested to hear that you have sciatica. I do too, and assume it is caused by deteriorated (osteoarthristis) in one vertabra in back. But your post makes it sound like even this could be related to PMR symptoms. When I started at 15 mg all my aches and pains went away, including what I believe had been osteoarthritis. The sciatica came back soon after I started reduction, not sure what level, might have been 13 or so. Do you think I should have taken that as a sign to slow down the reduction? My doctor had said 1 mg per week, but I have learned the hard way this is too fast.
Annie, I am sure you would feel a lot better if you increased the dose to 15mg or 20mg, the usual starting point. Are you able to do this immediately? Some lucky people have no pain at all with pred but I would say most people have a little. Stiffness in the morning for example.
If the higher dose works that is great, which I am sure it will. Stay on it a few weeks to get the inflammation under control and then reduce slowly.
I also live in the US and when my GP suspected PMR, he put me on 20 mg, & I was lucky enough to get in to see a rheumatologist a week later. My symptoms had subsided a little, but not significantly. He upped me to 30 mg and had me report back in 5 days. It helped a little more, but still not to the level he thought it should be, so he upped me to 40 mg and that did the trick. I've been tapering down from that ever since. Just goes to show that everyone's body is different. The worst part about that was that then I started having all sorts of nasty side effects from the prednisone that i had to put up with until I could taper. In the long term, it was worth it.
Hello anhaga, remember whilst on the higher doses of preds symptoms from other conditions are often masked. However, that in itself is not reason enough to stay on any dose for longer than necessary as there may be other drugs that your consultant may want you to take that may be more appropriate for that other condition. Please also read the Bristol PMR plan, it is the gold star treatment plan for PMR, although as already stated many of us then switch to the dead slow and almost stop reduction method as we find that reduction plan more sympathetic for our condition. Regards, tina
yep too low to start try 15.mg that should do it. if not go up 1mg a ta time till you get
to 20 but no more thaan that i would think
Thank you everyone for the quick responses. I'll call my dr tomorrow to get an increase in my meds. I couldn't get an appt with a rheum for 2 months so I'm relying on my primary care dr to give me right dose.
I'm not sure sciatica is related to PMR. I did two rounds of
physical therapy and the exercises they gave me for the
sciatica helped a lot. Having said that I still feel it in my
butt but not bad. I think sciatica is caused by sciatic nerve
getting pinched and the pain was terrible. Way worse than
anything PMR has given me. Yes, I think 1 mg a week is too
much. If I ever get to l0mg again I'll do the .5 like all the
knowledgable people on here suggest.
Most people I know in the States were started on more than 10mg - as you can see from the responses you have already had.
Follow this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and in the first post you will find a heading "Bristol paper" - take it to your doctor and ask him to read it. It is a handbook for GPs on how to manage PMR - ot fixed in stone but a place to start and see how the patient responds.
In the rest of the post you will find links to all sorts of other info sources. In the replies is an explanation of a slow reduction plan.
You start on a dose that is enough to manage the symptoms for most people - really too high. Then you reduce slowly to find the lowest dose that gives you the same effect as that first moderate dose which should be 15-20mg. If you need significantly more then there must be a question as to whether it is really the PMR we discuss here. PMR is not the disease, it is the symptoms of an underlying cause which can be anything from another arthritis to cancer - and that should have been excluded at the start. PMR is a diagnosis of exclusion - you exclude all the other possible options until that leaves PMR.
I do wish I knew what makes doctors think being on pred is the answer to everything in PMR and you will feel great! We disillusioned a few of the top international researchers on that one a year or so ago! No - we don't get to be pain-free and no, we don't feel totally wonderful - next question please!
Those of you who have sciatic pain - it can be caused by something called myofascial pain syndrome which causes spasmed back muscles which can trap or irritate the sciatic nerve leading to referred pain. It is often found alongside PMR - it is caused by the same inflammatory substances called cytokines but they are localised in trigger points on either side of the spine in the shoulders, the mid back level with the ribs and in the lower back, where a baby's dimples are.
Many patients on the forums are reporting relief from a technique called Bowen therapy or Bowtech, It is a very gentle therapy so is perfectly safe to use in PMR and does not require a physician's referral - you just have to pay for it. if it is going to help you will know within 3 sessions - no improvement and it isn't worth pursuing at this stage. It is available in the US as well as the UK. It kept me going for 5 years with untreated PMR - it doesn't do anything for the PMR as such but it does deal with some of the add-ons and it often allows you to manage with a lower dose of pred.
Look around the forums for reports from patients who have tried it and think it is very helpful.
I was started at 50mg daily - the higher dose does seem to be out of the norm!
My personal belief is that your dose isn't high enough. I was diagnosed 10 months ago and I'm still not 'down' to 10mg!
I'm currently trying to get from 12.5mg to 12mg - and it's a struggle - I haven't felt this stiff and sore for months.
I'm better in the afternoons too - takes about 4 hours for the pred to really kick in for me.
If wake up in the wee hours I'll take 5mg of my full dose and it starts working by the time I get up - dose splitting - doesn't work for everyone.