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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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  • EileenH
    EileenH sharon35553

    Posted

    Yes - try 5mg and see if that works. If not - try 10mgs for a week and then 5mg. I say this on the basis that top experts suggest adding 5mg to where a flare happened. It gives you some evidence to discuss with whichever doctor you see - but really, a neuro for PMR isn't usually very useful judging by other people's experiences. It is, after all, NOT a neurological problem.

    It is a very common occurrence - people force a reduction and then discover a few weeks later that that low dose they were on was keeping it all in check but without it the inflammation from the still active underlying cause of PMR has built up and they are back where they started.

    You will probably find you can get back where you were before you stopped and on a very low dose - and get your life back without too many problems.

    • sharon35553
      sharon35553 EileenH

      Posted

      Thank you all, Eileen on my way for blood work then going to try 5 mil to see what happens, can barely move today and cried all night, the shoulders are burning and aching at same time and legs not wanting to move.....feel like a truck ran over me so I don't care what the effects I need some relief and will take whatever necessary.

    • sharon35553
      sharon35553

      Posted

      HI Eileen,

      well I went on 7 mil of the pred and a miracle within five hours, every pain practically gone.

      i literally was walking with a cane and now seventy two. hrs  later pain free.

      im going to go to 6 mil tomorrow stay for a few days and then try 5 and stay for a longer time before tapering 1 mil a month.

      i need to feel this good for as long as possible and boy it's a good feeling being able to walk to bathroom without feeling my legs give out and my shoulders killing me.

      while I hate the fact that pred is a steroid I love the fact that for most of us it does work.

       

    • EileenH
      EileenH sharon35553

      Posted

      These are REALLY low doses already, less than your body makes as cortisol naturally. Don't rush!!!! And enjoy the feeling

    • Michdonn
      Michdonn sharon35553

      Posted

      Sharon it is not a race, if you rush, have a flare you end up consuming more Pred. Try using DSNS taper method, slow and easy. ☺️
  • BettyE
    BettyE sharon35553

    Posted

    I had longer than you before it came back. I had to go back to 15. 

    Can you not get some bloods done urgently and if the indicate it is PMR avoid letting the pain get too much of a hold?

  • Anhaga
    Anhaga sharon35553

    Posted

    One of the more sensible things my doctor told me when I started pred was that many of her patients keep a supply of 1 mg pred on hand for just such an eventuality even when they are off pred, in case they need  it.  I think the idea is that eventually these occasional doses get less and less necessary and after a while the patient doesn't need them any more.  What this does, of course, is allows you to keep control of any residual inflammation so that a true flare does not develop necessitating a larger dose to control and a whole new taper.  This is what I expect to do if I ever get to "pred zero". 

    It could be that 1 mg or .5 mg was really all that was needed to keep your inflammation under control, but the disease was not fully in remission.

  • Harrie4
    Harrie4 sharon35553

    Posted

    Well, Sharon, you can see the wealth of resources available in this group! I think Daniel’s point is well taken wrt starting with 5 mg as Eileen confirmed. I’ve tried the up-by-5 mg approach too but it didn’t make a discernible impact. I also tend to under-dose because I hate taking drugs but I’ve learned that a sub-clinical dose is counterproductive. So as as another respondent said, the last time I went in fast and hard with a 15 mg dose to deal with the pain. I immediately restarted the taper though, as soon as I had my body back. Then I put in for retirement— but that’s another story.

    You’re in good hands with this group....hang in there, sweetie!

  • Michdonn
    Michdonn sharon35553

    Posted

    Hi Sharon sorry to hear that PMR has raised its ugly head again, were you PMR pain free up till this flare. If not what was the level you were pain free.

    EileenH is far more knowledgeable than I, but I would use that pain free dosage plus 5 mg for 3 days, see if that reduce the PMR pain.

    • sharon35553
      sharon35553 Michdonn

      Posted

      HI Michdonn and thank you for your response.

      im having blood work done in am tomorrow and starting with the 5 mil. My Rheumy is on vacation til July but he was kind enough to call me and order the tests.

      he greed to take the pred for a few days to see if it helps.

      i was about 75 percent pain free, after tapering down to zero almost two months ago I was tolerating the pain and an Aleve at bedtime helped but now it's just so much worse,

    • Michdonn
      Michdonn sharon35553

      Posted

      Sharon, life is short, why suffer? I refuse to have any PMR pain, at 7 will be tapering to 6.5 using DSNS. BUT am PMR pain free, very active and positive. Good luck, be careful chasing a flare, if I don't get some relief quickly, I take more. I split my doses, so that makes it easier. ??

    • megan42504
      megan42504 Michdonn

      Posted

      Amen!  I don’t know if anyone else has anything similar to my history, but after all of the incredible information I’ve received, I’m so relieved.   Dealing with degenerate disk disease for over a decade, every therapist, therapy I could find... I’ve been on pain meds for so long.  In addition, I was preparing myself for a possible knee replacement, when my I told my orthopedic  I was having additional joint pain.  MRI showed arthritis in both knees, and he wished me good luck with a rheumatologist.  Weeks in bed, crying as every joint joined in, and my pain meds did very little,  I was sure I was dying.  Prednisone saved my existence;  within 5 min the doctor looked at my labs, brief consultation, and 40mg later I was a new person.   Haven’t had lumbar or knee pain since.  Why was I not given this years ago???  It wasn’t safe... not to be on long term.   Now I know what meds really aren’t safe.    AND I can be honest about my pain!!!   Unbelievable relief.  And thanks to this forum,  I can talk and learn with others dealing with this.   Amazing.   
    • EileenH
      EileenH sharon35553

      Posted

      It really isn't worth tolerating the pain if it is still PMR pain - all that happens is that you store up all the new inflammation until it is enough to start a REAL relapse and you are back where you started.

    • EileenH
      EileenH megan42504

      Posted

      There are quite a few doctors who use low dose pred for some RA (5-10mg) because it works well to manage pain and has few serious effects at that sort of level. Longterm high doses can be problematic but recent work shows that the lower doses used for PMR and the like do not create problems except for developing cataracts. The rest would likely have happened anyway with or without pred.

      https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, or even worse as so my case. Started on 20 mg and need 30 mg to get relief after the flare. The onset was painful, but the flare was much worse, ending up in a wheelchair. The doctor had me increasing the Pred in small doses instead of large and I could never get ahead of the inflammation. Never again, think positive with a smile. ☺️
    • megan42504
      megan42504 EileenH

      Posted

      Thanks.  Very helpful article.  Glad to know that prednisone isn’t the villain I’ve been lead to believe.  As I freak out with every reduction.  Can not go back to that ridiculous pain... or have that fear hanging out in my mind daily.  
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