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Flare

Posted , 11 users are following.

Roberta125
Roberta125

PMR for since May 2014. Had flare-mainly right hand-May 2015. Found forum and realized I reduced too quickly. Found relief at 30mg. Now at 8.5 using the DS tapering. Everything has been great. Was on 2 days of 8mg , then to take 8.5 for next several days. Pain came on within a few hours. Severe pain in right hand and some pain in right hip. Leave to go scuba diving in two days. Should I go up to 10 or higher. For how long?

This forum has been an absolute God send for me. Thank you so much to all who have contributed.

0 likes, 45 replies

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  • Daniel1143
    Daniel1143 Roberta125

    Posted

    Roberta, I can't comment precisely on your prednisone regimen, but I did want to share a concern about scuba diving.  For me, changes in atmospheric pressure have led to my worst flares. I find it particularly difficult after flying, so I have been very reluctant to go diving. Something to ponder.  Strongly recommend you take a reasonably shallow dive day one and see how you fare (vs flare)
    • maid_mariane
      maid_mariane Daniel1143

      Posted

      Hi Daniel

      Sorry for the late reply but I'm a diver and it is the one thing thank god i still can do. The difference now is that my husband or staff carry my gear and i take my BCD off in the water and they haul it out. They also put it on my and i either do a back roll or depending on the boat i put on my BCD at the back of boat and stride off so no weight on me.

      Swimming has been the only thing that has helped my mobility, emotional being as well.

      I hope this helps.

      Mariane

  • Sheilamac_Fife
    Sheilamac_Fife Roberta125

    Posted

    I found that using the dead slow nearly stop method it worked better if you do 1 day new dose then 6 days old dose, then 1 day new dose and 5 days old dose, 1 day new dose then 4 days old dose and so on. So there is a more gradual reduction and you don't take 2 consecutive days of the dose for some time. I know that I would flare if I did that. 

    As as to what to do now, hopefully Eileen or another of our more experienced PMRers will advise you better than me. I would probably go back to 10 mg, hopefully for a short time, just enough to soak up the inflammation and then carefully start to reduce again. How long at 10mg? First does it remove the pain? Possibly just a few days then try 9mg. I'd probably ask on here... Good luck!

  • EileenH
    EileenH Roberta125

    Posted

    I on the other hand can't comment on the scuba diving - but I will look at the PMR/pred question!

    Are they absolutely sure about the PMR? Or, perhaps more of interest at the present - are these really "PMR flares"?

    A flare that was "mainly right hand" or this one that is "right hand and right hip" is not typical of PMR. PMR tends to be bilateral, maybe not evenly so but is rarely so unilateral that the patient says right or left. Nor does it often come on in hours, it tends to creep up.

    I would ask my doctor to consider if maybe this could be palindromic arthritis. This is characterised by apparently random attacks in joints which can appear and disappear in hours or days. It is often a precursor of rheumatoid arthritis and (presumably) LORA. It is an inflammatory arthritis - pred will help a flare. Like Late onset RA it can appear very like PMR - and of course there is always a chance you are being greedy and have both! No reason why not.

    What to do about your pred I can't really say - if 10mg makes it better then fair enough to get on your trip. But Daniel's comment needs consideration too - one of the boring aspects of any chronic illness is that we may have to give up things dear to our heart. With a very heavy heart, I've given up skiing. I live at the bottom of a ski slope in a ski resort - it is hard to ignore.

    But do ask your doctor about "Is this REALLY PMR?" Or it could be something else - like myofascial pain syndrome that is trapping nerves and causing referred pain. But it is less likely that it affects joints.

    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      I've sold my motor bike. I am very sad about that. It was part of who I am... the fun, dangerous bit.....I took up knitting - and it really just doesn't cut it for an adrenalin fix. lol .  

      There was just no point keeping it in the shed not getting used and losing value. 

      I can't get my leg over, let alone sit in one awkard position for hours at at time with my arms outstretched.

    • Tastyron
      Tastyron FlipDover_Aust

      Posted

      I feel for you Mrs Dover. I had to let mine go a few years ago and still pine for the open road. What did you have? My last bike was a Triumph Trident 900cc Triple. I'm currently frightening myself watching the TT at the moment. 200 MPH on public roads! A bit faster than me!
    • EileenH
      EileenH Tastyron

      Posted

      At least it isn't raining in the IoM is it? Which makes a change...
    • Tastyron
      Tastyron EileenH

      Posted

      Yes it does.

      its funny watching the bad weather around the world and feeling smugly superior for a change. ;-)

    • Daniel1143
      Daniel1143 EileenH

      Posted

      Eileen, your question, "Is this really PMR?" Is the question I now must ask.  My Rheumy has asked that very question on each of my last two visits as the flares have migrated from my shoulders into my hands and my right hand than left so not entirely bilateral.  No pain, per se, but definite swelling of the fingers 

      i have tried to find information on LORA, and unlike PMR it's hard to come by.  Admit to being quite anxious, more so about what I don't know.  Feeling like Purgagory right now.  Interested in your perspective as the Rheumies tend to speculate, then disappear.

    • Anhaga
      Anhaga Daniel1143

      Posted

      Are you looking for LORA or late onset rheumatoid arthritis? Latter seems to have a lot of entries on google.
    • EileenH
      EileenH Daniel1143

      Posted

      Anhaga already has answered - in the USA it is sometimes called EORA, elderly onset RA. It's just RA that starts at a later age, as opposed to juvenile onset RA in children or "normal" RA at any rather younger age. But typing all the words results in a myriad of links.

      I'm sending you a link to a paper Polymyalgia Rheumatica vs Late onset RA in Rheumatology from Oxford Journals - a comparison. I hope it isn't too heavy going for you but at a quick glance it seems to be suitable to answer your question.

      Do your flares last just a few hours/days and then disappear from the affected joint? That might suggest palindromic rheumatism or reactive arthritis - which can be a forerunner of RA. There is a blog called Rheumablog by Wren, her RA started in that way, going into remission for several years at one point before turning into "real" RA - but she was much younger.

      No need to be anxious - LORA isn't significantly different to PMR in that the symptoms are very similar (which is what leads to the confusion) but erosion of the joints is quite unusual in LORA. However, it does respond to other drugs besides pred - the DMARDs and biologics - whereas PMR doesn't. So in some ways it can be a preferable diagnosis at out age!

    • FlipDover_Aust
      FlipDover_Aust Tastyron

      Posted

      It was a BMW F800... lovely bike to ride and tour... we used to ride ALL the time.

      I've just bought a John Cooper Works Mini  - it's actually a rally car disguised as a Nana car... it goes like the clappers and I've already been booked for speeding twice in the 2 months since I bought it. Some people shouldn't be allowed on the road in charge of a motor vehicle. lol

    • Silver49
      Silver49 EileenH

      Posted

      That's what I liked about her post. Inspiring.
    • Tastyron
      Tastyron FlipDover_Aust

      Posted

      Careful Flip. I know what those Aussie cops are like. Ive watched Home and Away.;-)

      Years ago I had a BMW RT 100. Hated it. Horrible bike. Different beast to yours I know but it put me of BMWs forever.

      Talking about John Cooper, my wife's grandfather used to race sidecars and was friends with Cooper and started building small race cars with him but died soon after in a racing accident. So you could have been driving around in a Cooper/Smith mini now.

    • FlipDover_Aust
      FlipDover_Aust Tastyron

      Posted

      Oh dear... "Home and Away"... What a terrible representation of Australia! I guess it's no worse than "The bold and the beautiful", Days' of our lives, or even "Coronation street" lol

      Interestingly, the Mini is built by BMW....

       

    • EileenH
      EileenH FlipDover_Aust

      Posted

      "Neighbours"?????  My MIL thought they were all true..

      Mini, BMW? - it is now. Wasn't once upon a time...

    • EileenH
      EileenH FlipDover_Aust

      Posted

      "Neighbours"?????  My MIL thought they were all true..

      Mini, BMW? - it is now. Wasn't once upon a time...

      Maybe it should be Fassbinder/Schmitt

    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      I've never watched Neighbours, Home and Away, or any other of that genre of crap - with the exceptions of "A country practice" when I was still in my teens.

      I amuse myself with other types of crap instead! lol

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