The flare started nearly 2 weeks ago when I was on 8mgs. and a week ago I went up from 8mgs to 9 and then to 10 which is a level that I have been good on before. When that didn't seem enough, I went up to 15 to try to knock out the pain. I have been on 15 for 5 days and I am still having pain in my groin and upper leg which is making me limp and unable to go out for a walk. It also hurts when I get up from a chair, get in and out of the car i.e, if I do anything pretty much! It's not nearly as painful as it was last week but is still there. Does this mean I should stay on the high levels until the pain has gone and then settle back down to 10 mgs, or is it safe to go down now in the expectation that it will continue to settle down in time? I really feel like I should know the answers to this by now, but each flare is so different and I have not really had a stable reasonably pain-free period during the 15 months I have been on Pred. - I have just lurched from one flare to the next.
Still in some pain having had a flare- when is it... - PMRGCAuk
Still in some pain having had a flare- when is it safe to drop back down to a maintenance level of Pred. ?
It is possible the leftover pain is not so much a flare as bursitis which will improve with higher doses of oral pred but will take longer than the "real PMR" pain to resolve - it was something I had at the start and it took a few months after going onto pred for it to go. I had a major flare 2 years ago - and that pain didn't go with oral pred, it needed local steroid jabs which were brilliant. At the moment (if it were me) I would stay on 15mg for at least 10 days or until all the pain has gone or at a stable level. Then start your reduction - and I chose to start from scratch after the major flare at 15mg and then reduced very slowly - and after a year and a bit am down to 5mg with no flare.
You say you have lurched from one flare to another - your reduction scheme needs some attention! 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.
THANK YOU PMR Pro! I was diagnosed July 2013 at age 56 and started on 15mg Pred - 9 months later I am still on 12.5mg, lowest I have been on is 10mg. Your explanation here has now made me understand what may have been happening with myself in the past 9 months. I am going to print your response and take it with me when I see my GP on Tuesday next as I intend to use your reduction plan. Thank you.
PRMpro, thanks for repeating the taper schedule.
Thanks PMRpro. I have put that into a Word document and saved it. I too am going from one flare to another. I'm having one now (3 days so far). I am reducing very slowly: 7 weeks 15 mg, 3 weeks 13.5 mg, 4 weeks 12.5 mg, 3 weeks so far on 12.0 mg. Should this be even slower?: I dread seeing my GP next week as every time I see him he says I'm reducing too slowly. But, any faster, these flares would be even worse!
Hi Badgergirl sorry you are having another flare .. I feel for you. I hope your pain eases soon. trish29x
As I said - I'm not convinced these are always flares. In some people the adjusting to the lower pred dose causes more pain than others. It isn't the length of time you stay on a dose that I use to judge "slow", it's the size of the steps between doses. If you plotted them on a graph it would be a jagged line when you drop 1mg at a time. With my scheme the line would be always travelling down but with much tinier steps as you go down by less than 1/4mg at a time. If you start at "1 day new/4 days old" you can still reduce by about 1mg every month using this which isn't particularly slow - but your body never has to adjust to that relatively big drop at one go, it is spread over the entire month. I start with bigger gaps purely because I have been so sensitive to the drops.
If you are "flaring" and 12mg it does suggest it is the reduction that is causing the pain - a study in Italy showed that 75% of patients would respond to 12.5mg in a month or so - it just takes longer than 15mg but does give a much lower total dose of pred.
We started to realise that the drops we are told to use were possibly too big when a lady came to one of the forums who had been made to reduce too fast and had yoyo-ed between 15 and 20mg and been in almost as much pain as with the original PMR. When we suggested 1mg at a time she was able to get to under 10mg with few problems. Then it was suggested you alternated old dose/new dose for a week before getting to all new dose, so 1/2mg at a time. We already knew about Ragnar's idea for getting below 3mg and I decided to try that from the start at 15mg. I'm lucky, I have a brilliant GP whose mantra is "slowly, slowly" so didn't have to fight. But each of these adjustments has resulted in people finding it easier and easier to reduce and finally one lady who founded a support group and set up a charity worked out a programme based on Ragnar's, wrote it out on a sheet of paper and started handing it out - including, as I say, to a consultant. Not one person has failed as yet. I just use my anticoagulant card which here is a daily calendar and have 2 columns of doses, one sintrom, one pred. You do need a calendar or a diary - but it is a simple idea and easy to work out providing you sit down quietly every so often to write out the next 1mg-worth..
Yes, Thank you again PMRpro for your wise words which I too have noted down. The pain actually seems to be getting worse and has spread to other areas today , so who knows where it will end!
Hello Suzy1959 .. So sorry you are going through so much pain.. Like you I had a dreadful flare- up nearly 2 weeks ago and my pain keeps moving around . I can't walk at all or get downstairs even though I have a stairlift .I had the stiffness ofPMR pain back in the upper arms for the last couple of days but I decideded to take an extra 1 mg of steroid late morning today and that pain has gone and the lower back pain is easier as well. I still have awful pain in left buttock, thigh and leg and also my ankles are very swollen. Your timing of asking about steroid reduction after a flare was wonderful to see and Thank you PMRpro for printing the reduction plan so clearly. I'm no real expert Suzy. ( but I should be after all these years ) but reading your post maybe your reductions are too large to quick .. My Rheumatologist suggests only half mg a month for me and I am not coping with that alongside Amitriptilyne 10 mg. I managed to crawl into my GPs surgery on Monday afternoon and was sent home to get Plenty of Rest. No blood tests suggested. Only a comment that I must get off the steroids . I KNOW THAT !! The exhaustion is awful but we must keep fighting. I am waiting for a pain clinic to get in touch and I'm tempted to go up even higher on the steroids but I'm scared to do that as it defeats the object.. I thought I would post you as we seem to be suffering the same pain at the moment and I hope it eases away for the both of us. Take care Trish 29
Thanks Trish29 for your kind words. I really feel for you and you Suzy1959. My pain seems to be getting worse too, moving from one part of my back to the other, as bad as when I first got PMR. I have an idea from reading your post. That is to take an extra 1 mg late tomorrow morning if it is just as bad tomorrow. It's all very well for GPs to comment that we must reduce or get off the steroids. I know they are concerned and just doing their job - but the pain is so BAD sometimes that we can't. They should understand this.
I quite agree with you Badgergirl ..I've always remembered that when I first went down with PMR all those years ago that I felt very ill and the pain was unbearable but this time around it seems worse than ever . I am listening to my GP and getting as much rest as i can ,but you have to try and keep mobile as well. I hope your pain level is better tomorrow . I have been reading lots of posts on here about reductions and I think I will give any reductions a miss for a while hoping that the pain clinic gets in touch . I will just feel guilty again that I can't reduce . take care Trish 29
I don't get the concept of "you MUST get off pred" - if it leaves you totally incapacitated there was no point using it in the first place. Rest does NOT help the pain or the stiffness and I do wish doctors could get their heads round that too. They happily tell you to take pain-killers - and some of them potentially have side effects that are even worse than pred. The difference between the safe daily dose of paracetamol and one that can cause liver damage is very narrow - all you actually need to do is be taking the daily dose and then use a cold/flu remedy without thinking and you may be in trouble. There is a version of paracetamol that contains an antidote, perfectly safe - but is it used? No, because it costs more!
Blood sugar can be controlled - it is just harder - and osteoporosis is more likely if you are totally immobile or likely to fall because of the stiffness. It has been shown that the most effective way to avoid broken hips in the elderly is to improve their balance, remove hazards and make sure they drink enough fluids!
But the guilt should be laid at the doctors' doors not yours Trish - they are failing you in not dealing with your pain problems effectively and quickly.
Thank you PMRpro you make me feel better in myself as I have been feeling pretty useless for the last couple of weeks because I Can't conquer this condition and the Medics expect you to . Its not my fault that I can't tolerate these medications that help you reduce on the Pred.. Methotrexate made me very nauseous and affected my liver . and the others did the same and also awful headaches/ migraines . The latest one is Amitriptilyne but that makes me feel drugged up. I took 15 mg of steroid this morning , 5mg of which are the coated ones which I believe are slow release and I then ended up sleeping the whole morning , but the PMR pain is easier, I feel guilty for sleeping the morning away ,but I can't walk or get downstairs so I Must rest .The worst pain is in the hip now and moving to the groin .. It seems strange that the pain keeps shifting I just long to get on my legs and find I can walk without pain ( I wish) My partner is in shock as he doesn't understand how the Body can just close down . and to 38jf please slow down on the Housework .. Everybody is busy around me stating that's got to be done . We need to Decorate . We must Declutter the Loft etc ,etc . When will they realise I can't do it and my exhaustion will not allow..Everyone is enjoying this lovely sunshine here in Surrey today and I AM STUCK IN ..Never mind , I will have to pick myself up and try and try again .. Thank you everyone for your support trish29
"I Can't conquer this condition and the Medics expect you to" - then they need telling not to be so stupid. They wouldn't say it to someone with RA, they wouldn't say it to someone with Type 1 diabetes - or at least, I trust they wouldn't. PMR is a vasculitis caused by an underlying autoimmune condition. It is not "all in your mind", it is not "give me morphine so I can get high" making it up, it is a real illness that HURTS and makes you feel like death warmed up at times.
Go to the northeast PMR GCA UK support site
and they have a DVD you can buy for £5, it is called "You are not alone" and it explains, for the benefit of your family and friends, just what this blasted illness can do to us. That's what it was done for.
Until you go on strike and say "NO" you will continue to suffer - one friend did things she'd been used to doing and suffered: until she decided last year to become a "Precious Princess". She stopped doing most things - housework, decorating, you name it, if it made her worse she stopped doing it. She has steadily reduced her pred since then, is down to 4mg and no problems. Like me before that for 4 years she had got to 9mg and flared, again and again. Maybe it is coincidence, we don't think so.
Noone would expect you to rush around after a hip replacement would they? This is worse, if there were an op that cured PMR I'd be first in the queue.
Are u on methotrexate as well? Supposed to iron out yo-yoing on the levels of pred & seems, so far, to work for me.
Anne and Suzy - no I'm not on mtx and I have no intention of taking it. It isn't a theme here - like most of the rest of Europe, they accept the overall evidence of the studies that have been done that it isn't particularly useful in PMR, merely adding more side effects and often making life very unpleasant for the patient. They are adamant it has no place in GCA at all.
There are no studies that show it to make a significant difference to the overall total dose of pred required and it certainly won't work on its own in plain simple PMR. And the most recent guidelines say that I think. It doesn't work for everyone with RA either and sometimes works for a while and then the effect stops.
I truly believe that pred on its own, reduced very carefully in tiny steps, is adequate in the vast majority of cases. If it achieved a dramatic improvement in symptoms initially it is almost certainly "steroid responsive PMR" - if it didn't it needed further investigation. Then the job is to find the lowest effective dose - and that last bit is what is ignored by many doctors. They are so desperate to get the patient off big bad pred that they cause the flares of pain themselves by reducing too far in too large big steps - the most common cause of "flares" as has been documented for years. So then they put the dose back up and then do the same again - yoyoing.
One definition of insanity is repeating the same action and expecting a different result.
Good question,Anne. I was put on Metho trexate last may and stayed on it for 6 months with no helpful effects whatsoever. Prof. Dasgupta has now put me on Leflunomide , hoping it will help me reduce. I have been on it for 6 weeks now and it should start working within 4-6 weeks, with the full effects being felt within 6 months. Unfortunately, it does not seem to be helping at all at the moment, but , after 8 weeks on it, I will see the prof. to assess its merits. I am beginning to feel that , as PMRpro says, that these DMARDs don't help many PMR sufferers. I am glad that MTX has helped you.
I was first diagnosed just over a year ago with all the pain below the hips - no shoulder or neck problems. But everything I read put all the emphasiswas on upper body pain. I also suffer with spinal problems which result in a variety of dibilitating leg pains as well as the occasional attack of gout. All of this led me to feel a little doubtful about the diagnosis of PMR. The "miracle" recovery on 15mg Pred was a powerful counter argument in favour of PMR. I think the piece from Suzy 1959 is the first time I've seen leg pain mentioned.
Could this be written more forcefully into the literature?
I've been on 12.5 now for three weeks down from 15mg which I was on for six weeks. I had started to feel so much better so I spring cleaned! Now I've set my sciatica off, I was also diagnosed with spinal stenosis prior to the Polymyalgia. I am due to reduce down to 10 mg in a weeks time for six weeks, then blood tests and back to the gp. He did say that I would only reduce then by 1 mg a time from then on to see how I go. I take gabapentin for the spinal stenosis but again on a reducing dose. I struggle gettin out of the chair and walking but that's my spinal stenosis not the polymyalgia. The doctor did say to me be kind to yourself and exercise gently to regain some strength but instead I chose to do heavy housework and paid the price and have put myself back a few weeks.
I am joining in the debate as I have also had a PMR flare within the last month (it must be the time of the year!) - this time it has affected more joints than my usual PMR shoulders and hips - wrist and hands were really bad and knees. I dreaded getting up in the morning as everything was weak, stiff and painful and I felt very fatigued and low. I had managed to get down to 9mg pred when this happened (also co-coincided with having a cold, the first of the winter, which may have triggered the flare). On the advice of my rheumy I went up to 15mg which got it all under control quite quickly and I hope to reduce back to 10mg before too long and maybe stay there for a while before using the slow reduction technique which I have been sort of using, but impatience on my part has resulted in my speeding it up a bit when it was going well. The disappointment of going back to 15mg is counterbalanced by feeling so much better.
Hi Suzy. Are you sure it is the pmr? I am having the same pain and problems and after an x-ray I have severe osteoarthritis of the hip and waiting for a hip replacement. It has played havoc with my pmr (had it for five years). I was down to 9mgs my gp thought it was the ster oids causing the trouble but the consultant said no evidence of necrosis. The pain in my upper arm muscles, thighs and back have been awful so I have gone back up to 10mgs. because I know the pmr pain is different to the hip problem. Although I am now on so many pain killers I should be horizontal !!!!! All the best Pam
Yes, I am pretty sure it is the PMR because I have had a variety of MRI scans which all say that my hips are OK. The PET scan confirmed inflammation in the hips and shoulders which "are indicative " of PMR. I am still in a bit of pain now and it is my other leg that is sort of giving way sometimes when I put weight on it. I have seen Prof Dasgupta again this week and he is sure that I have very active PMR. I have been on the Leflunamide for 8 weeks but that was only a starting dose, apparently. I am now on double and he is very confident that it will help me get down on the steroids within the next few months. He told me that 80-90% of his PMR patients find it helps. If not, there is apparently a very expensive drug ( beginning with T ??) that can be tried. He favours an every other day approach when reducing and doing it in very small amounts.
suzy1959: I am very confused, so I try to read a lot. You said: ...it is my other leg that is sort of giving way sometimes..." There is something called, claudication, which sometimes develops from GCA. A lot of people with PMR develop GCA. Claudication of the legs seems to be a GCA inflammation in the leg arteries which causes them not to carry enough oxygenated blood to feed your leg muscles and then the legs give way. There might be a test for it. I don't know what test though.
Thank you, Asbeck, I will investigate this further.....
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