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Severe flare

Posted , 21 users are following.

sharon35553
sharon35553

Ive been off  pred for six weeks now, was on it for three years and did the slow taper. Was doing ok for a while, taking only Tylenol or Aleve but suddenly all of what I had three years ago is back. Can barely walk so using a cane, neck and shoulders so stiff and achy and groin pain is just horrible.

im only 65 and going to see a neurologist next week. I know my rheumatologist will want to put me back on the pred but so nervous about starting it again.

my question is should I just test the waters by taking 5 mil to see what happens or first have new blood work done and then start it.

worked so hard to get off the pred but cannot go on like this, the side effects for me were not to bad but I did lose lots of hair and got dry eye......but now my life is just pain day after day and I can't suffer any more.

thanks,

Sharyn

0 likes, 39 replies

39 Replies

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  • Bethune
    Bethune sharon35553

    Posted

    So sorry, I had the same experience.  Had yo go back on prednisone,  and get pretty low but then flares happen.  I have not made it back to zero yet, but I keep trying,
  • Harrie4
    Harrie4 sharon35553

    Posted

    I’m so sorry to hear you in such distress. Something very similar happened to me last year...I got down to zero pred but I was in a high stress contract position and over 3 months slipped into total flare.  Wait for Eileen to confirm but I think the worse thing you can do is a 5 mg test the water strategy. Start with the clinical dose: 12.5 to 15 mg. Get your bloods done first. Then take the pred. You’ll feel better. Good luck! Let us know how it you get along....
    • sharon35553
      sharon35553 Harrie4

      Posted

      Thank you Harrie, I agree to get blood work done first and waiting to hear from Eileen.

      dont know what I'd do without this wonderful supportive group.

  • Daniel1143
    Daniel1143 sharon35553

    Posted

    Sorry to complicate things, but I might disagree with Harrie’s comment.  I to manage my way to zero, and then during the first few months I had a series of flares Which made me realize PMR was still in me, still lurking. It seems to me that taking a quick hit of prednisone to temper the flare makes a lot of sense. But not so much prednisone  as to become addicted once again.   I believe that if you take five or 6 mg over day or two, you’d  be safe. I think if you give it a try, as expression goes, no harm done. It’s a test and only that. If it doesn’t work, you can always step up your dosage for a longer period of time. I’m not a doctor so take my observations for what they are. 
    • Anhaga
      Anhaga Daniel1143

      Posted

      There is no such thing as prednisone addiction.
  • lodgerUK_NE
    lodgerUK_NE sharon35553

    Posted

    I am sad for you and sort of understand how feel and you are bound to be feeling 'oh not this again. So have a good howl and then shout at the moon and relieve your feelings.

    I would not wait, PMR only goes into 'remission' there is no cure, as you well know and why suffer.  You got through it once and will do it again and this time with more knowledge about yourself.

    You have been there, done it and can probably write the book.  Putting it off means it takes a greater hold, there is nothing to get in its way and it can and will run riot and you could end up with its big sister GCA.

    I well know how you feel, but other people I know well, when the PMR came back, it was easier the second time around, they knew what to expect, what to avoid etc.

    This time you do not need to lose hair - ask for Folic Acid it helps to stop hear loss.

    I would hit it hard and fast, start with 10mg and see how it goes, if that works, stay there if not up it to15mg,

     

    • sharon35553
      sharon35553 lodgerUK_NE

      Posted

      Thank you, I'm taking this advice because suffering is the pits......its sheer agony waking up and not being able to move. 

      It's kind of upsetting coming this far but once I see I'm in less pain I'll stay at that dose for a while  before tapering.

    • Flutterbie57
      Flutterbie57 lodgerUK_NE

      Posted

      Hello Lodger, it is the  first time I have heard about Folic acid. I am still on Pred (8mgs) and have already lost so much hair, so if I start on Folic Acid now, is there any chance that some might grow back ? Living in hope rolleyes

       

    • lodgerUK_NE
      lodgerUK_NE Flutterbie57

      Posted

      I am sorry, I am not a medical person.

      As it has to be prescribed why not ask your GP and also put it in your search engine and read up on it.

      Please who are on chemo etc are nearly always given it at the same time.

    • Anhaga
      Anhaga lodgerUK_NE

      Posted

      Isn't the folic acid necessary when people are on methotrexate?  I know B vitamins generally are important for hair growth.  A friend of mine, not celiac, eliminated gluten from her diet and inadvertently gave herself a B vitamin deficiency, has lost her eyebrows completely.  An object lesson in not heeding the adage "All things in moderation". rolleyes

    • EileenH
      EileenH lodgerUK_NE

      Posted

      As far as I know folic acid is available OTC in the UK. Boots lists it.
    • Daniel1143
      Daniel1143 Anhaga

      Posted

      Yes, Folic Acid was required by my Rheumatologist when I spent a few months testing out Methotrexate.  I stopped the Methotrexate when I realized it was serving no purpose and after reading about the risk of liver damage.
    • Anhaga
      Anhaga Flutterbie57

      Posted

      Your hair will start to improve as your pred dose lowers.  It takes a while.  I was appalled at one stage when my hair seemed to be falling out amazingly fast, and yet the hair on my head seemed to be improving, having been kind of weird and lank for a while.  Then I realized that at the same time as the new healthy hair was growing in abundantly, old pred-influenced hair was falling out.  I can't remember what my dose was when things improved but it was quite a while ago.  I think the bad hair was from early days at my highest dose, 15.

  • megan42504
    megan42504 sharon35553

    Posted

    Hi Sharon

    So sorry to hear about your pain.  I’ve been dealing with PMR and it’s coworkers only since January.  So I’m in no position to give any advice.  But I do know the frustration.. as I’ve had weeks almost completely pain free, only to wake up in horrible pain.   Feeling like I’m loosing days of my life, to stay on my prednisone reducing schedule.

    I’m 51, and don’t know if getting PMR at an earlier age will give me a better prognosis?

    I’m constantly getting blood work.  My biggest concern is from my primary, who is concerned about effects that prednisone is taking on my organs.

    Good luck 🍀 

    • megan42504
      megan42504 EileenH

      Posted

      Wow, thank you Eileen for directing me to a useful website.  

      During my initial month of PMR hell, I ended up with horrible GI issues.  That may have caused the concerns of my elevated pancreas, liver and kidney panels:  now seeing a GI as well.  Seemed to have happened so quickly.  May have nothing to do with the prednisone.   

      Priorities have hit hard the last months; days with limited pain trump my moon face😜.

      Thanks for your advice 

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