I am 72 years young and was diagnosed with atypical PMR in April 2015 mainly because my inflammation levels were high : ESR 103 and CRP 330, and also because I have had difficulty in steroid reduction.- I started on 20 mgs of Prednisolone and am now down nearly 2 years later to 7.5mgs. I later learned from this site that this steroid reduction problem could have been caused initially by too big a drop from 20 mgs to 15mgs, I certainly had quite a reaction to it. Also At the beginning I was also taking all my medication together,having had no advice from the pharmacist and am afraid to say that I just didnt' think about drug interaction. Fortunately, I found this site about 4 months after diagnoses and have found it together with Kate Gilberts' book to be invaluable for both support and advice.I would like to thank everyone.
El 50 introducing myself.: I am 72 years young and... - PMRGCAuk
El 50 introducing myself.
Our pleasure!
I was even more atypical - I had NO raised blood markers! But I have also struggled to reduce. I started on 15mg but it took me about 4 years to get below 8mg - and not for want of trying with slow reductions. Some people need more pred for longer - no two people have the same pattern/activity of the autoimmune disease and while some absorb 90% of their pred - others absorb only 50%. If you are a 50% person - obviously you appear to need a higher dose!
PMRpro, if you had no raised blood markersif how if you have no information in your blood markers how did you get an accurate diagnosis did you get an accurate PMR diagnosis?
The same way as anyone else would, raised markers or not: on the basis of the clinical history and symptoms together with a miraculous response to 15mg of pred in less than 6 hours. PMR and GCA should always really be a clinical diagnosis. My symptoms, apart from the blood markers, was textbook, including a couple typical of GCA.
The ESR and CRP are only ever indications that there is inflammation somewhere in the body, not an accurate identification of what it is. Blood tests and x-rays ruled out various other options - PMR or possibly a couple of more obscure things were left. Further blood tests made them unlikely. The dramatic and almost instant response to a moderate dose of pred is fairly typical of PMR. Other things may respond to higher doses or much more slowly - which is why they recommend not using high dose pred for PMR.
Would it work as well to start low doce pred and work up to a dose that controls the pain?
Not really - it wastes time really and confuses the issue. The initial doses won't be enough to get a result and that is enough for some doctors to think it can't be PMR plus you will have side effects without any benefit.
You start at a dose that will work for PMR and probably not for anything else - it helps confirm the suspicion it is PMR. If you need a lot lower dose then the reduction won't be too difficult provided the steps are small.
You clear out the inflammation and see if there are any symptoms left over - that is your guide for what to look for at lower doses. Then you reduce to find the lowest dose that gives the same result as that starting dose. Too high a dose and other things will respond too, even inflammatory arthritis, though generally slower and to a lesser degree.
I guess I need to try it. I am scared of Pred since I have had some very unpleasant side affects on low doses. But my pain is getting so bad and the pain meds cannot control it any longer. The only thing that still helps is Clonazpam or Lorazpam.
Have you been diagnosed with PMR? I would doubt that a benziodiazopine would help if that is what you have. If they do it is probably because there is something else that is causing the problem. Did pred help?
I have not received a 100% diagnosis but the rheumatologist thinks it is my primary care thinks it's not in the Cleveland clinic thanks it's not. Yet I don't respond to anything else they've tried. I tried low-dose prednisone once before and they seem to help the pain a little bit. So I guess I need to bite the bullet and try a high dose. It seems like when I took the low-dose prednisone and then stopped my pain got a lot worse than it was before I started taking it . But I must say benzodiazepines and opioids and NSAD medications to help the pain. So that's the dilemma maybe it's not PMR. But I guess I have to try the Pred to make sure
Not a "high" dose - that masks all sorts of things. A moderate dose, usually 15 or 20 mg to start as PMR nearly always responds well to that dosage and it's not so high as to confuse the issue by masking pain from a different cause. Also prednisone doesn't cure PMR. It manages the inflammation so you can have a decent quality of life, but until it goes into remission we have to continue taking a certain amount - determined as PMRpro outlined above. So it's not surprising that once you stopped your low dose trial all the pain came back worse than ever. Hope things get better for you soon.
I understand. By high does I meant 15mg. I am very sensitive to side effects of medications. So by low dose I meant 3 mg. The most Pred I ever took in one day was 12mg and that was only for a couple of days. Just expermenting. But I felt so lousy I stopped taking it. Do the side effects get better if you hang in there for a number of weeks? I was Grumpy, had Insomnia, Muscle weakness, and felt like I was coming down with a cold the whole time. Also when I stopped taking it at 3mg for 3 weeks and 1 mg for a couple of days I went into adrnal fatigue for about 3 weeks.
jwb43, were you taking pred for PMR pain? Most of us who start on pred for PMR are so happy to be free of the pain I don't know if we are really aware of less pleasant side effects, not at first. You'd have to ask my loved ones whether I was any more grumpy on pred than I usually am anyway! No, I didn't feel I was coming down with a cold, and as a lifelong insomniac pred made no difference to me, except that alleviation of pain helped me sleep better. Muscle weakness did not make an obvious appearance for some time, but I know I am much weaker now, after about twenty months on pred, than I was prior to treatment. But at least I can move, which was becoming kind of hard to do with untreated PMR!
We are all different, both in how the disease manifests itself and in how we respond to treatment.
As piglette says - I doubt lorazepam would help pure PMR. It will act as a muscle relaxant - so there may be an element of that as well. As she says - did pred help? Or have you perhaps not taken a high enough dose to know? That is the downside of starting low - you have to have enough to get a result to draw any conclusion.
PMRpro, Do you know if taking prednisone for two short of a period of time and stopping before your PMR is in remission will make your PMR worse in the long run? For example say the side effects become more than you can bear after three months and you taper down and stop. Will your inflammation come back worse than before?
I wouldn't have thought so though I don't know. The activity of the underlying autoimmune disorder is the same irrespective of the pred, it has no effect on that at all.
However - having had a period with relatively reduced pain levels, stopping the pred may make it feel as if the returning pain is worse. the activity of the underlying disease activity can flare at any time - causing a return of pain even while on pred.
Dear jwb43, why would you want to stop taking pred when it gives such fantastic relief for PMR pain? Have you had allergic reactions? Personally I could not bear to go back to the incapacitating pain I had.
I just feel so terrible what I'm on prednisone. My muscles get really weak and I feel sick the whole time. And I don't know how much pain relief it'll give me cuz I've never taken a high enough dose. But I can control my pain about 80%with pain medication but it's getting to where they don't work as well as they used to and I think eventually they won't work anymore for me. It's just pain that has spread through all my muscles in my whole body. And I can't walk very far or sit for very long or do much of anything but I'm still trying to work everyday
"And I don't know how much pain relief it'll give me cuz I've never taken a high enough dose"
If you aren't taking enough pred to work to combat the inflammation and so the symptoms then there is no point taking any at all. You have no benefits to offset the downsides. And painkillers are not a good way to go - they have plenty of very unpleasant and potentially dangerous side effects of their own. More of which have emerged this week.
To be honest though - if you can control the pain to 80% with painkillers, either you haven't got much pain or this may not be PMR. Most people find PMR only responds to pred.
Hi,
You're very welcome, that's what we're here for!
Take things even easier from now on, you're getting to the level where your adrenals need to wake up and do some work. Some people find the next few tapers difficult!
Good luck.
Thank you All.
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