I have now tapered down to nearly 0 Pred, ( 3 years and 11 months since diagnosis by a rheumy - who was one of the 'around 18months school').
I am 'trialling' being on 0 Pred by taking .5mg or 1mg when I feel that the modest aches and pains I feel in the morning are 'different' or when I sense some PMR pain emerging during a day when I haven't taken a pill. (Practice kind-of agreed by GP)
New' pain has recently emerged in my hands - which, as the result of correspondence on this forum a while ago, I have self-diagnosed as the beginnings of Dupuytrens Disease or Contracture.
One morning when I woke this pain was there with no previous warning.. It has continued to appear in both hands in the morning but seems to ease off during the day, but never completely. I believe that, according to PMRPro's 'rules', that means it is not PMR pain that I am feeling - so one guess it's an 'arthritic' pain 'revealed' by the disappearance of Pred.
But, It's all a bit of a mystery because, as I am typing, the pain in my right hand has disappeared but in my left hand it's there . (I took 1mg of Pred a few hours ago.)
(In case it's relevant I will mention that when I was originally really 'hit' by PMR, my hands were agonisingly painful and I couldn't do anything manual without extreme pain.
My rheumy once mentioned to me that that was the one 'unusual' feature of 'my' PMR.
Since being on Pred and before this pain appearing a couple of weeks ago, I had no recurrence;
To cut to the chase: can any fellow PMR sufferer give me any suggestions, based on personal experience, on how to handle this condition and/or how I may expect it to progress?
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Hildalew
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Not sure about it not being PMR - it’s sometimes very difficult tell as you get lower - normal aches and pains gone into play. And as often said if Pred even 0,5mg can make a big difference.
Suggestions -
Maybe by not taking a steady but very low dose of Pred -say 0.5mg per day, you are allowing the inflammation to build up again -PMRpro’s dripping tap analogy,. Perhaps returning to small dose for a week might give you the answer.
Alternatively, instead of taking Pred when you think you need uf -perhaps try paracetamol and see if that helps.
Thank you. I think I will try a proper slow taper from 1 to .5 and then 0
My body doesn't really like paracetamol - the only time I have taken it, painful lumps - or maybe they were itchy rather than painful - it's so long ago I can't remember. Since then, I have avoided pain-relief pills (except for a couple of Anadin (or maybe it was straight Aspirin) when I had raging toothache. I'll try the Pred taper first,
Correction to my first sentence in my reply to you. - I'll go back to something rather higher than 1mg to mop up the 'flood' and work my way back down. And patience isn't one of my strong points.
Eh - "PMRpro's rules" ? The only rules I would use there is "Does it do with paracetamol?" If it does it probably isn't PMR. PMR pain often does improve through the day as you get moving.
My hands were probably like yours with PMR before pred and nothing eased it. I now have sore hands again - and I did think it was PMR for a while but it is different and paracetamol sorts it out in an hour or so. This I am assuming is probably OA - will ask next week. I'm on tocilizumab so the other pains may be controlled by that,
I don't think my husband complained about pain with Dupytrens - just the contracted finger. Stopped him extracting his wallet from his pocket - that was his excuse anyway
When my PMR first took hold, pre-diagnosis so no Pred, my morning walk up to town for coffees was a 20min shuffle (5mins pre-PMR). The same walk in the afternoons was more like 10mins. All the pain seemed to ease somewhat during the day with movement.
Yes, I found that too. I did acquafit every day and after it I was better able to move, even well enough to do Pilates or Iyengha yoga. The pain never really went though.
Thank you for telling me of your experience: in the period immediately before I went to the GP to tell them my woes, I don't, honestly, remember any times of 'relief' but in the weeks when I was innocently thinking I had some beginnings of arthritis, I now recognise that I had periods with without pain. (Since Pred and the slow taper I can't really remember much actual pain - only mood swings and fatigue.)
Thank you for telling me about your husband's experience with Dupuytrens - I am so relieved that the pain in my hands is a flare and not going to be a constant discomfort.
my pmr started in my hands 7 yrs ago. I just had this discussion with my new rhumitologist and he doesn't believe you can get pmr in hands or feet but I did as do other.
He is very old school but luckily I'm at .5mg and won't need him other that giving my cortisone shots.
If regular pain killers don't work it could be pmr
Aha. That's why my rheumy mentioned that the PMR in my hands was unusual. He was probably in the same camp as your rheumy but couldn't deny the evidence! Yes, after getting PMRPro's account of her husband's experience, and having the pain ALMOST totally disappear after upping my dose to 3mg yesterday, I am sure now it is PMR. It's just found a new place to get overexcited!
when I got believe 5mg I started getting trigger fingers that's why the injections and they really help. Both my Dr and I believe it's probably arthritis but if the injections work let's go for it.
originally when trying to get diagnosed a dr put me on a arthritis medication and it didn't work for my hands but now I believe it is and so does my new rhumitologist so I'm off this week for x-rays and blood.
If shots work once a year or more I'd rather a shot than pills.
crazy disease but I agree try regular overcounter meds 1st they don't work it probably is pmr raising its head.
my new rhumitologist also believes there a few lin haulers which I pointed out my cousin who goes to the same clinic who is told she'll be a lifer.
I can't believe some of the ignorance of these people sometimes.
I have only just remembered that years before IPMR I had a trigger thumb. Somewhat out of character, I asked a GP if she could suggest anything to 'sort it out' - the reply was 'No, there is nothing we can do except give you pain relief. As it wasn't actually painful, that wasn't much help either! Eventually it just disappeared and hasn't been experienced again. An osteopath I was receiving occasional treatment from at that time appeared to be surprised that it had disappeared but didn't explain his response to this news. Oh Lordy, the body is such a complicated thing, isn't it?
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