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I told you all that my PMR had subsided, no more pred, then a terrible fall!

Posted , 15 users are following.

Elijo
Elijo

Hi everyone, shortly after my PMR subsided an II was easily pain free without any prednisone, I took a terrible fall, EMTs took me to Sarasota Mem. Hosp.  The pain was excruciating, I had to take opoids.  I was then sent to a rehab for 5 weeks and was discharged Aug. 3, not going to outpatient PT.  I use a walker and a wheel chair for now.......................  My life has suddenly stopped.  My wonderful husband is my caregiver, and I shoud be back to normal in time.l am SLOW.but improving.

Please all of you be very careful, one slip can change your whole life!!!  (PS:  One I had gotten my PMR under control 2 1/2 yrs. ago, I could function in full, not now!)  Thanks for listening to me.        Elinor

3 likes, 28 replies

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  • Tinapoly1
    Tinapoly1 Elijo

    Posted

    So sorry about your fall and hope you are feeling better soon. May I ask you how long it took you to get rid of your PMR pain and how long were you on Prednisone? I love this sight and sharing our information since we know better than anyone what we go through with PMR and the massive weight gain & all the other symptoms of the Prednison . I want to see that it didn't take someone 5.9 years to go into remission. I have been thin my entire life so to get obese at 63 yet eat like a bird is not only shocking to me but everyone I know. The look on their faces is so depressing but on the bright side & am grateful I am no longer screaming in pain and so crippled that I was going to end up in a wheelchair.

    • lynda62707
      lynda62707 Tinapoly1

      Posted

      Can completely relate to your post. I too, (though not thin) have always been of average weight and been very confident in my appearance. Not so much anymore!😖I've only been dx for a bit over 1 month. Although the prednisone has greatly improved my joint pain, the side effects have been incredibly Awful!! I find myself constantly weighing out which is worse?!! What a journey we're all on. Glad for this forum!

    • EileenH
      EileenH Tinapoly1

      Posted

      5.9 years is a MEDIAN figure - there are people who take longer, there are people who take less time. 

      There is a thread on zero pred:

      https://patient.info/forums/discuss/zero-prednisone-discussion-450915

      I know one person who got off pred in 2 years and has stayed PMR-free and one with GCA who got off in 2 years - which I think is possibly more common to be honest. Most people I know who have been able to stop pred have taken between 4 and 5 years.

      And I will say it again - cutting carbs a lot does help many people avoid weight gain and even lose weight while still taking pred. It is harder at GCA doses but it can be done.

    • Elijo
      Elijo Tinapoly1

      Posted

      I  had called my MD's office and told the nurse all of my symptoms, thinking I needed to go to a pain clinic.  My MD called back and said he thought I had PMR, prescribed a pred pack to start after I got lad work.  By the end of the first day, I began feeling better.  He prescribed 40mg. pred.  and gradually decreased it, and I felt great, looking at the world w/ rose colored glasses!  He let make my own adjustment, trusting me as a retired nurse.  When I got down to 3mg. a couple times, I had a flair.  But this last time after very slow reductions, I'm doing fine, no more PMR for at least 3 mos. or so.  Yes, I did gain about 10 lbs, even being careful what I ate, avoiding carbs.  My clothes still fit me (some a little tight).  I never really lost it except in the hospital recently when I got real sick (electrolyte imbalance, esp. very low sodium).  I won't get on the scale home here, I'm not steady enough.  I had PMR for about 2 1/2 years.  Many folks have it for much longer, and I do wish the best for you.  I hope this tid-bit of info helps you.  Altho I no longer have PMR, I still follow this great site!

    • lynda62707
      lynda62707 Elijo

      Posted

      Thx elijo 4 your wonderful report on how you were able 2 get off of prednisone! Very inspiring, and I'm so glad you're doing well w/o it. I've been on 9.5 for 1 week now (down from original of 15mg), and just woke up with Super Stiffness in my fingers. So much so, it's difficult to.hold phone as I type this! Any ideas??

    • Elijo
      Elijo lynda62707

      Posted

      I am not sure how fast u r tapering, but don't go too fast.  I would taper 1/2 mg. for at least 2 weeks, sometimes longer when you get real low.  Now with the pain you are having in your fingers, I'd go up, say to 12mg.  Don't try to get off too fast.  Sometimes I feel the damage pred does is exaggerated.  Better to be pain free and be able to function.  Tapering takes a LOT of patience! Plus quite a bit of time, Don't rush it or you could be yo-yoing back and forth with pain.  That would be my suggestion.  Good luck!

  • Silver49
    Silver49 Elijo

    Posted

    This puts my back pain in to insignificance. I am so sorry you are having to cope with so much. I hope you recover well. Because I am feeling so much better I had forgotten how weak my muscles are and lifted my m-i-l from a wheelchair to her zimmer. She was unable to weight bear and I spent 2 weeks unable to sleep much because of pain. I was ok-ish on the move. Lesson learnt. I will not be proud but will call for a porter. I guess we all forget we are not do able and do what we automatically did before PMRj. Enjoy having your family and their thoughtfulness. Best wishes. 
    • Elijo
      Elijo Silver49

      Posted

      Thanks for you kind thoughts.   Yes, we do take our capabilities for granted, then when something serious strikes, we are feeling pretty hopeless.  Take care of yourself and very best wishes to you!
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