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Newbie struggling with decreasing Prednisone!

Posted , 19 users are following.

connie08789
connie08789

I am a 72 year old female diagnosed with Polymyalgia  Rheumatica on November 24, 2014. I am a retired school teacher, and I have been very active all my life.  I love traveling in our RV and camping in state and national parks with my husband, hiking, walking our Basset Hound, do needle work, attend a water aerobics class, read a lot, etc.  

My first symptoms developed in September with stiffness and pains in legs, thighs and lower back.  Internist thought it might be the Simvastatin and Zetia for lowing cholesterol that I was on, and took me off those,  did multiple blood tests which only showed high muscle enzymes, and put me on heavy dose of Naproxen. The follow up blood test showed the muscle enzymes had dropped.

Then I had an HD flu shot on September 27th, and things got so much worse to the point I could barely walk; terrible pain in my arms and shoulders to the point I could not raise my arms up over my head and barely hold a cup of tea; terrible pain in the backs of my thighs to the point I could not sit down for any length of time and ate meals standing up; severe fatigue; no stamina, etc.   My internist tried Tramadol, Gabapentin, and Lyrica which did nothing, and then put me on prednisone which was a miracle, and I could function and was pain free. He had also tested me for Lymes' Disease, Fibromyalgia, Rheumatoid Arthritis, Lupus, West Nile, etc. etc. During this time I was also sent to a neurologist who did an Electromyography (EMG) & Nerve Conduction study (NCS) which showed no problems, and also had a CT scan of the spine which showed very mild arthritis.

So now off to a rheumatologist.  After her round of blood work and x-rays on my back and shoulders, she diagnosed me with Polymyalgia Rheumatica, with the flu shot possibly being the “trigger” that sent me into full blown Polymyalgia Rheumatica.  She had me do four prednisone infusions (250 mg. each) in two weeks; put me on 15mg of oral prednisone; methotrextate 2.5 mg three tablets together once a week; Actonel 150 mg. - once a month; and folic acid - 1 mg. daily.

After my second visit in early January she increased the methotrextate to six tablets together once a week; and stepped me down to 10 mg. of prednisone daily, and is still stepping me  down with the hope to have me on 5 mg. of prednisone every other day by my next visit on March 4th.  I'm presently (Jan.26, 2015) at 7 & 1/2 mg. of prednisone daily and struggling with additional stiffness of thighs and shoulders, and no stamina again. I've been on this the past four days and every days more symptoms coming back.  So last night I took the full 5 mgs instead of 1/2 of a tablet, making it back to 10 mg. for the day.  This morning was so much better!!! Not sure I'll make it to her hope of 5 mg. of prednisone every other day by March 4th.

Finding this site and forum has been awesome.  I've barely scratched the surface reading the posts, but have already learned so much the past two days of reading.  I know this is long, and promise shorter posts in the future.

7 likes, 25 replies

25 Replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey connie08789

    Posted

    Connie, I can't think why you were started on MTX at the same time as the steroids, apart from your doctor mistakenly believing that a lower starting dose of steroids plus MTX was the way to go!.  It isn't, as unfortunately you have already discovered

    The only treatment that has so far been proven to work to reduce the inflammation of PMR is Prednisolone, and generally at a starting dose of 15mg.  MTX is sometimes added in as a steroid-sparing agent ONLY when a patient is having difficulty in reducing the steroid dose.

    It sounds as though you were having an initial good response to just 10mg of steroids BUT that lower dose wasn't enough to get complete control of the inflammation over the very short period that you were on it.  Perhaps 6 weeks or so at the 10mg steroid dose would have been quite successful on its own without ever adding in MTX, as proven by your sudden improvement back at 10mg.

    What to do now?  Either return to your doctor with a copy of the BSR Guidelines for managing PMR, or find another doctor who is more clued up, suggesting that you remain on 10mg and see how you progress, or ditch the MTX and increase your steroid dose to 15mg for a few weeks.

  • Debkimly
    Debkimly connie08789

    Posted

    I am decreasing the predisone also 25 to 20 to 15.  I was on them less than 3 weeks so I am hoping my body will adjust.  In my case the rheumatologist doesn't think I have PMR?  Good luck
  • matthew11279
    matthew11279 connie08789

    Posted

    Hi Sorry to hear about your diagnosis.  This is a great post and very educational.  I am 57 year old male very active and I too was diagnosed with PMR in May 2014 starting with 15mg prednisone and got all the way down to 1mg a day (May 2015) and had a flare up.  Went back up to 5 over last week and still not feeling as good as before.  As you can see my stepping down was over almost 1 year but had flare up when it got down to 1mg.  Hoping I can stabilize with the 5mg over next 4 weeks before I see Rheumatologist again.  

    I have a question for others reading this post.  Does anyone else have PMR symptons that present with chest pain, feeling of tightness in chest and overall malaise.  Hard to concentrate and become overwhelmed with symptoms.  My Rhematologist said that these are probably symptoms from PMR but I haven't seen systems listed before.  Just wondering.  Thanks

    • tina-uk_cwall
      tina-uk_cwall matthew11279

      Posted

      Hello Matthew, before I talk about the pains I have  to say that although males do recover from this condition quicker than females I do feel that you reduced far too quickly. Flares are a right pain because they can take such a long time to get under control again. I had a flare when I attempted to reduce from 9 to 8 and had a flare and eventually had to up my preds to 10. I was still experiencing twangs and twinges of pain a month later. I stayed on each reducing dose for 6 weeks to ensure that each dose was effectively controlling any inflamation.

      preds do weaken muscles and so I have experienced pains that are not PMR related as such. I suffer from a pain around my left hand side breast bone area, that my dr thinks is stomach related? I most certainly never had this pain pre PMR. But I do not suffer any feeling of tightness in my chest. I have also experienced 5 times now over the 16 months of diagnosis a terrible stitch like pain where my liver is that radiates up to my teeth? It only happens when I am in bed and the pain goes away as quickly as it comes. The trouble is all these pains can be linked to more serious medical conditions and so when we experience them it is a bit disconcerting and worrying.

      personally I would speak to your Dr re the pain in your chest. I'm speaking to my GP re the pain where my liver is, just to be on the safe side. All the best Matthew, regards, christina 

    • MrsO-UK_Surrey
      MrsO-UK_Surrey matthew11279

      Posted

      Matthew, I'm sorry to hear that you are experiencing a return of symptoms after having got as low as 1mg of Pred - sadly this happens all too often when people reduce the steroids in either too large decrements and/or without remaining on each new dose long enough to keep the inflammation under control.

      Finding it "hard to concentrate" and suffering "overall malaise" are common complaints, the cause being due to both the inflammation and the treatment.

      However, the chest pain you are experiencing should definitely be mentioned to your GP rather than dismissed as being "probably symptoms from PMR".  As there are over 82 Pred listed side effects, anything is possible, but sometimes it is all too easy to blame the Pred when it might be something completely unrelated.  I did experience bouts of pain in the area of my ribs, but I would not exactly call it chest pain or "tightness".   Wise just to this checked out straight away.

      I do hope the return to 5mg proves successful.

    • EileenH
      EileenH matthew11279

      Posted

      Reducing over 1 year is a bit fast - 2 years is more like the norm but even then for only a quarter of patients - half take up to 4 to 6 years and the rest even longer. That said, men usually are luckier!

      Please ask your GP to check you out for heart arrythmia of some sort. The underlying autoimmune disorder that causes PMR symptoms can also cause damage to the electrical cells that control heart rate. I developed atrial fibrillation and that can cause similar symptoms to those you describe if the episodes are long. Mine is fully controleld on medication - and the most important bit is an anticoagulant! But they are NOT symptoms of plain PMR.

  • djwillms
    djwillms connie08789

    Posted

    I am new to this forum as of today, but my PMR started at the same time (late November 2014) so I am following your discussion closely.
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