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My update...

Posted , 13 users are following.

MaggiGrace
MaggiGrace

I wanted to update the group in case my experience might be of help to anyone else.  

I got hit by the PMR train in January 2015.  My worst pain was shoulders, then hips, and some pain in my knees.   I was officially diagnosed with PMR in May 2015 based on my symptoms, test results and exclusion of other diseases based on test results. 

My rheumy suspected PMR early on.   Because of severe side effects due to oral Pred given for allergies 30 years ago, I dug my heels in and refused to start on a high or moderate dose of oral Pred.  I agreed on March 4 to accept a 40mg  kenalog (cortisone) injection in both my left shoulder and right knee. 

Within a few days, my hip pain had subsided completely.  My left shoulder pain and knees were greatly improved. Rheumy said there was a systemic value to the localized injections.  Within a couple of weeks, it was clear the benefit of the injections was wearing off.  I agreed to begin taking 5mg oral Pred.  It helped but was insufficient to manage the PMR pain that was returning.  

So I agreed to up the Pred to 10 mg, and asked the rheumy for a localized kenalog injection in my right shoulder about six weeks ago, as my right shoulder had continued to give me the most pain.  

I am am happy to report that as of right now, I am still 99% pain free.   Rheumy had me go down to 9mg the first of June.  I had a couple of weird days (about the 3rd/4th days of the taper) where I had some discomfort and bad dizziness but it passed after a few days.  Rheumy had warned me that as I begin to taper, "your body will talk to you and not in a good way."  I took a couple days off work during the taper to let my body adjust, and that seemed to help.  

For or the record, I'm 59 (will turn 60 this year).  I have tried to stay as active as possible.  I'm not running any marathons but do try to get in 2-3miles a day.  Some days I do and some I don't.  But I feel it helps me stay balanced.  

To to all of you - my heart breaks as I understand the pain you are in.  I wish you all a pain-free and peaceful day.  

 

3 likes, 13 replies

13 Replies

  • lodgerUK_NE
    lodgerUK_NE MaggiGrace

    Posted

    Please read up on GCA symptoms  - belts and braces - sometimes PMR can and does lead to GCA and you do not want that at all.
    • MaggiGrace
      MaggiGrace lodgerUK_NE

      Posted

      Thanks.  Am watching that carefully.  Regular visits to my rheumy and eye doc.  So far everything is stable (so grateful for that)
  • tina-uk_cwall
    tina-uk_cwall MaggiGrace

    Posted

    Hello maggigrace, it's good to hear that the worry of an earlier episode using preds has passed and the current oral preds are working well. Whilst I appreciate you are very happy with your rheumatologist care, I would  at this stage of your recovery now consider using the go slow and almost stop reduction method. I use it although I only ever reduce by .5 each time and things are very good for me presently. It really does work. All the best, christina 
  • LisaCACO
    LisaCACO MaggiGrace

    Posted

    congrats on being able to run 2-3 miles most days! very inspiring. I just turned 54 (GCA only diagnosed jan 2015) and I'm really trying to resume my activities as much as I can. nice to hear stories like  yours. gives me hope. 
    • MaggiGrace
      MaggiGrace LisaCACO

      Posted

      Should qualify... No running.  Just walking.   Brisk sometimes but just a walk.  smile still does me good when I can do it.  
    • EileenH
      EileenH MaggiGrace

      Posted

      Yes - MaggiGrace is doing it correctly - even for the fit running is a less good activity than walking in almost every way.
  • Danrower
    Danrower MaggiGrace

    Posted

    Nicely described, MaggiGrace. Thank you.

    Was there a stimulating event which you suspect was related to the onset?

    Or spontaneous with no apparent cause?

    Good to hear you are improving! I haven't felt the strength or energy to be able to work or work out until I tapered down to my 5 mg/day pred dose. I'm now a little over a year into the PMR.

    • MaggiGrace
      MaggiGrace Danrower

      Posted

      Stimulating events...  For me, I'm 1000% convinced I had internalized my stress for soooo long, the dam finally broke.

      In January 2015,  I reached what I can only refer to as a blind intersection of multiple stresses that collided at high speed with no safety belts in sight - I have a very high stress job, combined with having mucked my way through a very difficult 3+ years of helping our daughter/granddaughters recover from a broken family after our dirty rat of a now ex SIL dumped them on our doorstep to run off with someone else's wife... All of which was combined with my aunt passing away and my discovering she was a hoarder which required me to clean out her house with 50 years worth of trash.  

      I didnt have a cold or any type of infection or anything that should have triggered a physical illness, but in hindsight now, I did feel like I was ready to implode.  

      I'm practicing that song from "Frozen" all the time now.  "Let it go!!!"😊

      So so my theory is that PMR was my body's answer to my internal strife.  

    • dan38655
      dan38655 MaggiGrace

      Posted

      I had stressors going onat the time of my sudden onset of PMR 12/2013.

      Right at the time there had also been a severe cold snap for several days, so hadn't had my usual levl of exercise activity.

      A broken wrist had flared up into an arm/shoulder stiffening syndrome just 9mos earlier, which had coincided with a house purchase around the same time, all of which had caused financial and other stresses over those months in between.

      Started Prednisone at 15mg, now at 18mos, having stepped up to a current 5mg, after a 1mg taper down to 3mg didn't go well at all.

      So the taper has to be slowed, leveled off somewhat more slowly, as the body's cortisol must begin taking over in a regulated normal way.

      I am currently still suffering fatigue, range-of-motion symptoms and much pain while moving around in bed, but only half as bad as before Prednisone, and am getting a lot of daily exercise at least.

      BTW I'm 55 and male, and have used no other treatments than the Prednisone.

    • MaggiGrace
      MaggiGrace dan38655

      Posted

      It seems I have had the greatest level of relief from receiving the kenalog  injections directly into the bursa of my shoulders.  I wonder if that makes a difference overall/in the long term to do the injections in addition to (possibly) requiring a much lower starting dose of oral Pred (the injections + 10mg have alleviated my symptoms 99%).  
    • EileenH
      EileenH MaggiGrace

      Posted

      As a result of the reedback from patient representatives, a UK research group is considering investigating whether by targetting the things like shoulder/hip bursitis and muscle spasms more specifically this could result in a lower dose of oral pred - which doesn't help with either except at pretty high doses. A lot of people have independently tried using Bowen therapy - and many have found that certain bits of what had been assumed to be PMR pain DO improve - making the PMR more bearable. Since I had my back "sorted out" using targetted therapies including manual mobilisation of trigger points, cortisone injections into spasmed muscles and "needling" I had been able to reduce the pred dose down to 4mg. I'd just gone back to 5mg (where I definitely feel better) because of some niggles. I had a session of Bowen on Saturday and at least one of those niggles is noticeably better today. Not sure of the others yet as they were a bit intermittent.
    • MaggiGrace
      MaggiGrace EileenH

      Posted

      Hi EileenH -

      I'm very. hopeful that continued research will bring about new understanding for those struggling with PMR and other autoimmune disorders.    

      I do feel that the direct bursa injections "early-on" in my peak symptoms were likely instrumental in allowing me to use the lower 10mg starting dose of oral Pred.   I suspect time will tell as I continue to taper the dosage low and slow,   

      Have a great day.  

  • Nancy_O
    Nancy_O MaggiGrace

    Posted

    Thanks for the update! It helps to hear other people's stories..
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