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pmr or not ?

Posted , 7 users are following.

cheryl74384
cheryl74384

k so much controversy, i was told,by gp, and now have heard many more say, if you have pmr, it will respond to pred, if not then perhaps not pmr, regardless of markers. However as you all know, when gp started me on 40 mg, with no baseline blood work, my pain was alleviated that same day within hrs, however, when i did get to see rheumy 13 days later, her response was, that dosage way to high, any pain would respond to 40 mg ? so right from the get go, unconfirmed, of course(done 2or more years ) chest exray results from my jan physical, and any bloodwork that had been done since i saw gp, also wanted result from urologist report of nov 15th, and then had me drop from 30-20 between oct 25 and to nov 7 when i saw her again, which i am still on,now i did have either flare or whatever on nov 8, which i have been struggling with, as she wants to keep me on 20, she is away now 3 weeks, and told me if symptons subside over wk or 2, try to drop to 17.5, but if not pmr, then what, EORA? so what are symptons for that,  and why did initial dose, down to 25 and 20 for 10 days, manage my symptons, don,t you have pain in small joints, wrist, fingers, ankles etc with arthritis, what i am trying to ask, is what symptons are different, and blood work between pmr and rheumatoid arthritis

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  • EileenH
    EileenH cheryl74384

    Posted

    Cheryl: I'm sure I have already said a few times, there is no real way to distinguish between PMR and LORA/EORA. They can present looking absolutely identical and there are no unequivocal markers. In some people RA has added signs - a very high rheumatoid factor for example would suggest RA rather than PMR. But people can have seronegative RA - where the RF factor is in the normal range or only slightly raised. Or they may have had the RA long enough for there to be joint erosion, the lining being damaged, but in the very early stages you may not see it. And RA will also respond to high doses of pred.

    Actually you COULD get off pred fairly quickly if you want/need to- not cold turkey but you haven't been on it very long so you could probably reduce at 5mg a week and stop so your doctor can see you without pred and do tests. You won't be able to do it that fast later though. It would have been easier if the GP hadn't started so high - but it is still not impossible. My daughter has asthma, she is on 40mg for a few weeks and then reduces 10mg at a time to zero. But your pain returned at 20mg, no doubt you have a kind rheumy who wants to see if she can work it out without stopping pred. The slow reduction we talk so much about here is for patients who have PMR who need to find the lowest dose that will manage their symptoms and it is nice to do that without a lot of discomfort and flares. It isn't needed just to get off pred - you just reduce and put up with the pain that is fairly likely. You aren't looking for a specific dose, you are just getting off it. Totally different thing.

    But don't get the wrong idea cheryl - in no way do I regard pred as a life sentence - it is what gives me my life back and a lot of others feel the same way. I've had PMR for 12 years, I haven't been on pred that long, about half and half I suppose. I have no obvious side effects or damage to my body due to pred. If you have an inflammatory arthritis of any sort they rarely go into remission, you WILL require the medication for that for life. For most people, about 75%, who have PMR it DOES go into remission within about 6 years.

    As we keep saying - you will have to be patient with your rheumy and yourself. Autoimmune disorders are tricky things to diagnose at the best of times - and many of them can cause the same sort of symptoms as PMR at first. The skill is in deciding which it might be - and then deciding which drug is best for you.

    I think between us we have told you pretty much all we can until your rheumy decides how she wants to proceed with your treatment. You won't necessarily be 100% pain free and you won't be "back to normal" - and YOU have to do your part by pacing and resting appropriately. The pred just relieves the inflammation - it does nothing else at all in PMR. YOU have to make lifestyle choices that help YOU to cope. They are different for all of us and what worked for Flip or Anhaga or Nick or me may not work for you. You have to work it out yourself - we'll happily make suggestions about things that helped us. But it is up to you whether you try them - and luck if they do help.

    • cheryl74384
      cheryl74384 EileenH

      Posted

      ok thanks eileen,the fact that i did ok on 20 mg for 10 days or so then could be inflammation was not that active for those days, and started up on nov 8th, and symptons increasingly more apparent, mind you i 3 days ago i had not a bad day or morning, i am reluctant to go off cold turkey, even though you said i haven,t been on long, could probably manage, but the pain i have this am,reminds me how bad it got, my rheumy is away now for 3 weeks, and gp says he,s not expert, doesn,t want to change anything on his own, so,today i will just rest ,see if makes a diff in am tomorrow, you did see i had cysto at hospital yesterday, would that affect how i feel this am, was not painful really, they had to check bladder because of blood in urine, said looked ok, no tumours, did sent sample cells from urine inside bladder, to lab, be couple weeks before results they said,since this am has been worst,,can hardly lift arm, specially right arm i was going to call gp anyway, can i take the tylenol same time as my pred dose, of 20 mg,hopefully take edge of this pain for a bit ? 
    • EileenH
      EileenH cheryl74384

      Posted

      The way you sit or lie for the cystoscopy, tension if you were worried about it - all sorts of things could make you feel uncomfortable today. Possibly you have other back problems - same applies. 

      No reason not to take Tylenol at the same time as pred. But no - I didn't say it would be OK to go cold turkey - I said IF you were to reduce to do it over a few weeks but in fairly big steps. But you don't do it without your doctors knowing.

      But really - behave as a poorly person for a week - you might feel a lot better afterwards.

  • iellen32
    iellen32 cheryl74384

    Posted

    This is a problem without end we know - we must take a deep breath and recover our courage and endurance.

    Following the anti- inflammation diet . Keep moving,

    exercising everyday, observing the markers,

    There are Rheumies so without care or interest that the send us to take lab Befote the consultation !

    We better to don't keep them taking care of us!

    To pppsy attention id our obligation.

    Take care,

    Irllen

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