I was diagnosed with PMR in June, started on 15mgs Pred and am now down to 4mgs, but am experiencing pain in my left shoulder at night which wakes me up. I would like to come off the Pred but am hoping my symptoms will not get worse. Before diagnosis I could hardly walk upstairs and could not get up off the sofa. Initially my GP gave me diazepam then amitriptyline as I had neck, shoulder and knee pain. A plasma viscosity test result was high. Do you think taking pred at bedtime will help ?
I think you reduced your pred too fast. To go down from 15mg to 4 mg in six months is not good. My rheumatologist has me going down 1mg a month. This is my second round of PMR. I was first diagnosed 3yrs ago. I came off the pred this past July only to have a flare in August. The rule of thumb is to reduce and stay pain free. If your pain comes back, you usually have to go back up to whatever mg kept you comfortable. Eileen has a 'dead-slow' method of reducing on this site.
Hi Steph ,way to quick to reduce your pred .i started on 20 mg two and a half years ago and very very slowly reduced to 6 mg ,up to date .their are lots of knowledgeable people on here that will be able to give you a slow reduction plan ,beer with them till they read your post .good luck with this horrid PMR and a pain free Christmas to you x
Whoever suggested you should reduce so quickly? Asking for trouble! Even Rheumatologists who have no time for PMR sufferers agree that it usually takes about two years to be free of it - and many, many take 4-6 years for it to go into remission.
Do take care otherwise you could experience a massive flare.
Hi Steph, I suggest you go back up 1 mg at a time giving a few days in between, to see where it holds the pain and stay on that for a while. I know we all hate going back up but you don't want to be suffering any more than necessary. I had a really bad flare in August after surgery and had to go back up from 9 mg to 21 mg that was the only amount that would stop the pain. Also, I took the advise from the lovely people on here and split my does to half early morning and half mid to late afternoon. I've ban great ever since and it has allowed me to start back reducing.
good luck and have a pain free Christmas!
Sue
Is the shoulder pain the PMR? It could be just that shoulder has a problem - bursitis or capsulitis (frozen shoulder), rotator cuff problems or something like that which is made worse by lying on it at night. Perhaps an x-ray or MRI would identify that and it could be managed separately.
While there is nothing wrong in the speed of reduction providing you were able to do it without flares of the pain, as the others have said that is a VERY speedy dose reduction. Although about a quarter of patients are able to get off pred in well under 2 years, this group then are at a higher risk of a relapse and requiring to start over again, meaning a higher dose again and often the relapse doesn't behave at all like the first time - often being more problematic.
As long as the underlying cause of the PMR is active (it is an autoimmune disorder that makes your immune system attack your body by mistake) you will have symptoms unless you take some pred. You may be extremely lucky but it is also possible that it isn't PMR - unless you doctor did a few other tests he might not have considered the other options. Did he do muscle enzymes for example?
However - don't be too desperate to stop the pred and go about it very slowly for the rest of the reduction. If symptoms do reappear don't just ignore them, hoping they will go away. They may not - and you'll end up back at square one. You could try taking pred at bedtime - though then you run the risk of the pain returning in the evening if the effect of the pred is wearing off although it may be easier to cope with. But a bit of experimentation with when you take your dose might well help.
My doctor has recommended I take my pred breakfast & lunch, not too late in day to avoid not being able to sleep. He started me on 40 mg. in Nov. reduced to 30mg. on Dec. 1 until March 2016, then will taper more, and I am doing so well. Had trouble sleeping in the beginning, I take melatonin 3mg. at bedtime to help sleep. I guess we are all different Good luck!
Thanks for all your help. On reflection I decreased too fast, initially 15mgs for 3 weeks, then 12.5 mgs for 3 weeks then 10mgs for 3 weeks followed by reducing 1 mg every 3 weeks. I think it is PMR and not any other shoulder problem as the pain feels exactly the same also I am not as agile (!) as I was and am starting to experience pain in my legs. I am seeing my GP tomorrow to discuss my dosage. Do you think regular ibrufen is of any benefit ?
No - it doesn't usually help PMR much at all and you shouldn't take it alongside pred anyway. Both pred and ibuprofen can lead to gastric irritation and both together increases the risk. Enough pred on its own is a better answer than taking mroe medications that each have their own side effects.
While it is very tempting to reduce fast it usually fails - you need to get the existing inflammation under control and then you reduce slowly to find the lowest dose that deals with each day's new lot of inflammation.
If you go to this thread
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find lots of links to info in the first post and in the replies there is a very slow reduction plan with an explanation. One of the links is to the "Bristol paper" - written for GPs by rheumatologists to help them manage PMR better. They start with 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year. Whether you really need a year at 10mg is a matter of opinion - but they find it reduces the rate of flares to 1 in 5 rather than 3 in 5. Some of us think that reducing using the "Dead slow" approach mean you wouldn't have to wait that long - and we'd also suggest 1mg drops not 2.5mg drops to start with. But you MUST have the inflammation under control to start with. Your symptoms must have gone as much as they are going to go, and if your blood tests were raised they must be down to the normal range if possible and steady.
If you were OK down to 10mg then fair enough - but to reduce the dose so quickly below 10mg is asking for trouble. You need at least a month at each new dose to be sure it is still enough and top experts say reductions in PMR should never be more than 10% of the current dose. That is 1mg at 10mg - but below that you are looking at being better doing it 1/2mg at a time. This isn't just pie in the sky - it is the distilled wisdom of hundreds of patients' experiences.
If you have an appointment tomorrow take the Bristol paper with you and ask the GP to at least consider it.
Hello Eileen, saw my GP today and showed him the Bristol paper. He agreed that the pred had been reduced too fast as suggested by his colleague. He said he tailored the pred according to the individual and their symptoms and that the paper was hospital based rather than for GPs. He has increased my pred back up to 10mgs and to be reviewed in Jan with blood tests late Jan to see if my inflammatory markers have decreased. He s said that next year when stable I should reduce down to 7.5mgs.
The paper ISN'T hospital-based - it was presented to and published in a journal for GPs!
Your GP is better, but half the trouble (at least) is that doctors try to treat everyone the same and a one-size fits all simply does not work in PMR. That is my main beef with the Quick and Kirwan paper and they also don't make it clear that some patients are not going to get to zero, they will stick at some point beow 10mg for some time before being able to continue the reduction.
But you will probably do far better if you do that reduction to 7.5mg in smaller steps than 2.5mg at a time. Below 10mg 1mg at time is a very good idea, 1/2mg is even better - if only to try to avoid the demon of steroid withdrawal pain which is so similar to PMR that people think it is a flare.