Curious

Am I one of the fortunates ones that seem to be sailing through this PMR stage with no hiccups?since I was diagnosed with PMR in Aug I was put on 20mg pf pred.since then I have had blood test to see how good I am doing.each time my meds have been reduced.now a week ago on my own I have reduced my meds from 5mg to 2.5mg.so far all is going ok.I must admit that I do have twinges an some aches an pain, but not enough for me to reach out for the painkillers yet ,I am able to cope with it.so is this the norm for some PMR sufferers?I am 54 yrs ,working part time,looking after my grandchild 2days a week,an keeping up with other commitments,I try not to over do things.an when I feel the need to rest I literarily go to bed an rest.have a good day to you all Akumal

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  • That is amazing that you have reduced from 20 to 2.5 in less than 4 months, most people take over a year to do that.

    I started on 20mg but flared when reducing so went up to 30mg to get over the flare. I recently got down to 11mg as on an injection also and MTX but flared last weekend and back up to 15mg til tomorrow when I see the rheumy nurse.

    So well done you for coping and controlling it, long may it continue.

    Gentle hugs and keep smiling

    Sue

  • Hi akumal,

    Yes, I can relate to your story because it's true that some folks do beat PMR with relative ease and I'm sure many specialists see them and wonder why there are so many patients who have a real battle to overcome what seems to be the same illness, but we must not forget that this illness has had very little research and I have heard that PMR may have more than one form. Also, let's not forget pred. I'm sure that the longer we spend on this drug, the harder it is to get off it.

    When I was first prescribed pred my GP, who did not think I had PMR urged me to get off it too quickly and by the time I saw the specialist less than 8 weeks later, I was on only 3mg ---- backed up by 6 ibuprofen tabs per day. Because I had reduced so quickly I had not lost my adrenals and was bouncing around most of the time. The Rheumatologist said that I had come down far too fast and because I certainly did have PMR I would have a flare. He was right. As soon as I reduced the ibuprofen, I had a big flare and had to go back up to 30mgs again.

    Perhaps if our doctors could always diagnose this disease correctly in the first place and hit our systems with a good wallup of prednisolone and then reduce sensibly, then many more of us might get well again more quickly. Who knows? After all we are individuals with our own unique strengths and weaknesses.

    We, on this web site, are providing valuable information, not only to each other, but to the professionals as well, regarding the ins and outs of these conditions PMR/GCA.

    For those of us who are not so lucky and are having to fight harder, we mustn't lose heart. We'll make it.

    Pats.

  • amazing that your docter put you on Ibruprofen......He said to me to take pamadol...(not that that does much) but I take panadeine forte wich has also 30 mg of codeine in it.....

    Best wishes

  • Hi diana,

    my doctor put me on ibuprofen because he thought I had a wrench injury, not PMR. Paracetamol was suggested, but it does not agree with me and makes me feel as if I have been poisoned. I must say that ibuprofen did a pretty good job, but can damage the kidneys if taken for too long.

    Pats.

  • Well done! My mother had PMR twenty years before me. She took the steroids like a good girl and was completely recovered in less than a year and a half. I was listening to a scientist on the radio this morning, talking about how most disease activity goes on in the genome, so our genes have a lot to do with how well we recover, side effects of drugs etc. So the fact that it took me four years to get better maybe has something to do with my father! (Thanks Dad).

  • Hi akumal

    Yes you certainly do sound like "one of the fortunate ones". I have spoken to a couple of other people who recovered from PMR in about a year. There are probably different severities of the illness, plus there are people who respond in textbook fashion to the treatment but also what we have to remember is that those people who have straightforward journeys to recovery without any "hiccups" along the way probably don't feel the need to look for any online support - in other words, they don't have questions for which they seek answers so we tend not to hear too much about such success stories.

    I do hope your continue to do well but do be careful not to rush the final stages as reducing from the 5mg point can be a problem and has proved a sticking point for some people.

  • Yes it worked in my case when first prescribed i was free for five years and fell good .

    Please keep eye on any returning symptoms , i missed mine this year ,and have had problems ,but now again i hope back accepting and coping . good luck

  • After 19 months I am down to 4mg of pred. The ESR is still slightly up and CRP is OK. I'm to try a further reduction after everything settles down after New Year. It is difficult to unscramble the PMR aches and pains from the ones I have had for years and, since my shoulders have long been arthritic, I can't blame all the aches on PMR.

  • hi i am about 2 years into pmr and just seem to be turning the corner since going onto methotrexate last December,i felt great when i first went on big dose of steroids but couldn't get down to a small level,now on 5mil daily with weekly methotrexate,got some problems with right groin and thigh burning and just hoping it isn't a side effect of the methotrexate but its really nice to be able to sit and hold a newspaper and read it and comb my hair with my right arm,i am glad you sorted yours out quick and i hope you stay well,a friend of mine who has it does the same,if she feels it coming on she take 15-20 mil and soon feels better,its quite strange how many people have it and you don't realise who until talking about it with friends

  • A family friend (retired MD) was also off in under 6 months. he did later have a flare but that settled in about 4 months. The general description on the internet for PMR notes it tends to need 6 months to two years of treatment, but most people seem to need at least 18-24 months' treatment according to my rhumatologist. My understanding is that it is generally men who get the shorter period.easier recovery! And yes I agree with some suggestions here that recovery probably is linked to genes to a good degree...

    I'm down to 1.5mg after about 18 months on preds and hope to be off not too far into the new year. I think I would have been down to this level within a year of treatment except I had complications with inflammation in my knees, not due to PMR but the PMR triggered the severe inflammation of an existing condition. The family friend above recommended staying on the higher level of preds til the knees settled and also take naproxen (NSAID). This settled them but I was then wary of reducing preds too fast and induing another flare of my knees so took my time over the past 6 months.

    20mg to 2.5 in 4 months is very fast though (and a reduction of 5mg to 2.5 is a big percentage reduction and not generally recommended -- usually at that level you want .5mg reductions...) -- would just be cautious about rushing things as too-fast reductions are shown to lead to a higher risk of a later return of condition/flares. Also would check with your rheumatologist about taking painkillers alongside prednisone -- really only should be done with a medical OK (any type of NSAID that is -- paracetomol is OK).

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