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What happened to me via prednisone

Posted , 12 users are following.

DebbieHurts
DebbieHurts

I'm not advocating stopping prenisone at all, and I still have to take it for the PMR pain, but I was one of the ones you hear about who suffered side effects of the worst degree.  My back began to hurt about half a year ago, and increased until one day I twisted just a bit too much and bam! fractured my back.  I had developed osteoporosis. I had a kyphoplasty.  Went home after rehab and during a simple act of putting on socks fractured another place.  Same deal wih rehab after.  Now home with continuing PMR pain that makes me keep taking pred.  I have no answer.  By the way, I toook meds for bone health, too.

0 likes, 47 replies

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  • EileenH
    EileenH DebbieHurts

    Posted

    Of course - all the fancy meds in the world for bone health will do nothing if your calcium and vit D levels aren't right so that must be checked regularly and out right if they are low. But you aren't the only person I have heard of to have been on such medications and still had a spinal fracture. 

  • Buffy61
    Buffy61 DebbieHurts

    Posted

    OMG! That sounds painful! Reminds me I need another Dexa scan to keep an eye on my bones!

    on a mother note...I have been on prednisone for over 2yrs now. Started at 50mg...? TA. I am now down to 6mg. About 8 months or so ago I started getting Achilles' tendon pain. Scans showed Achilles tendinitis. In June I completely ruptured my right Achilles' tendon when I tripped over a handbag in the tearoom! Pretty sure both of my weak tendons are from long term steroid use! Just hoping my partial thickness tear in other foot doesn't go on me! Desperately want to get off steroids so that my Achilles can heal and life can go on., anyone else had tendinitis from steroid use?

    • sandy65909
      sandy65909 Buffy61

      Posted

      On steroids since June, 2017. Have tendinitis in my wrist. Physical therapist thinks it's from Pred. When I have shoulder and arm pain, tendinitis is worse. Physical therapy helps. 

    • EileenH
      EileenH Buffy61

      Posted

      Indirectly - a GP gave me a quinolone antibiotic while I was taking Medrol and I developed achilles tendonitis which is common if these two drugs are mixed. If you have achilles tendonitis it is usually advised here where I live that you use a boot support and crutches to reduce the risk of rupturing it and take particular care. I used crutches for 9 months after mine was diagnosed and it resolved with no further problems.
  • DebbieHurts
    DebbieHurts

    Posted

    I had a bone density scan before and after I started pred and was good, but haven't had one lately.  I was on that adron... bone helper for years each week, but have to admit I often forgot a week. NowI have had a Prolia shot.  I would like to ask the dr more about osteoporosis.  I don't know why such a small twist would fracture my back.  I actually had two fractures within two weeks of each other and had two kyphoplasties.  My back feels strong now, but who  can see inside?  My PMR pain is hip and leg muscles and feels like knives are sticking me and achiness is crawling around in me.  But if I take the pred, I'm afraid of the fractures.  What would you do?  

    • EileenH
      EileenH DebbieHurts

      Posted

      Not sure where you live Debbie - but you need to speak to an osteoporosis specialist. If you have been on bisphosphonates and still developed fractures, one of two things may have happened: if your calcium and vit D levels were not right the bisphosphonate would not work and form denser bone. But alendronic acid taken for too long may cause the formation of brittle bone tissue which may fracture. Only an expert could decide what has happened in your case. And a rheumy is not an expert in that field.
    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      Thank you Eileen for the above post.  AA is such a worry.
  • kathy67492
    kathy67492 DebbieHurts

    Posted

    If you are in the USA you should talk to your doctor about taking Actemra.

    Toxic as Actemra might be, you already know the damage that was probably accerbated by the prednisone. I think the fractures just happen to some people. My rheumy is very concerned about that very thing even though my bone scans have been good. Enduring the PMR pain doesn't work...keep looking for things that might help. My first Actemra infusion relieved the pain and I started reducing the prednisone two weeks later...1m at a time, which I was never able to do before. I have gone from 8m in June to 4m starting today. Best to you...keep in touch😊

    • sandy65909
      sandy65909 kathy67492

      Posted

      I'm in NJ and NY. Where in the US are you?  I want to taper because of osteoporosis and discomfort from wrist tendinitis but I am conflicted about how. I went from 25mg to 24 in 2 weeks alternating doses for a week then one week of new dose. Tried to have a normal weekend in NYC with too much activity and paid with pain yesterday so I rested, went to physical therapy, walked my dog a bit and babied myself.

      If I feel OK today, I want to taper Wed. Not sure if I should stay with 2 week method or go to 26 day DSNS way. Suggestions.

    • EileenH
      EileenH sandy65909

      Posted

      My tendonitis in my wrists is from PMR, not from pred. It is the first place a flare shows up if I try to reduce too far.
    • sandy65909
      sandy65909 EileenH

      Posted

      Thanks. So happy you responded. I've been on 24 mg for 1 week. Do you suggest another week before trying 23? I feel much better today than yesterday. Conflicted about every other day higher than lower dose for a week then one week new dose before next decrease or 26 day DSNS Method. Suggestions please. 

    • EileenH
      EileenH sandy65909

      Posted

      If you are improving give it a few more days. 

      It is entirely your decision - if whichever is quicker works for you, go for it. If it doesn't, slow down.

    • sandy65909
      sandy65909 EileenH

      Posted

      Thanks. I will give it a few days then try quicker method with an open mind. Thx 
  • DebbieHurts
    DebbieHurts

    Posted

    I am in Reno Nevada.  Got good calcium and a little low on Vit D in a test about six months ago.  Thank you all for info and stories/
    • lodgerUK_NE
      lodgerUK_NE DebbieHurts

      Posted

      You need to address that low Vit D, it causes aches and pains exactly like PMR. In fact is is an exclusion test before you are diagnosed with PMR.

      You need Dekristol and once it is within the normal range, take 1,000 units per day as a maintenance dose.

      OK so you live in Reno and there is sunshine. So slip, slap, slop and as you get into your 60's you don't make it as easily as you did.

      One thing the USA (as far as I know) still fortifies the flour with Vit D) the UK stopped years ago and low Vit D is now a big problem and in children as well.  The Cancer charities now advise, lessen the slip, slap, slop and just don't sit in the sun without it between 12noon and 3pm when it is at its highest. 20 minutes at a time without slip, slap, slop.

    • EileenH
      EileenH lodgerUK_NE

      Posted

      I think the USA also fortifies milk and orange juice with vit D - don't quote me on that though!

    • Anhaga
      Anhaga EileenH

      Posted

      I was intrigued to find out that only since the 60's has fluid milk been fortified here in Canada, before that it was only things like dried and condensed milk.  And, yes, it is now possible to buy Vitamin D fortified orange juice, but that's a choice you can make as most is not, don't know situation in US but it's probably the same as all our juice comes from there.

    • EileenH
      EileenH Anhaga

      Posted

      I think the US has the highest quantity of fortified things when it comes to vit D - in Europe it is not allowed at all.
    • Anhaga
      Anhaga EileenH

      Posted

      I wonder why not?  Here they add back some of the vitamins removed from flour when it's refined, plus folic acid is added to some things, as well as D to milk.  Adding D to milk apparently virtually eliminated rickets in children in quite short order, significant because it had been a problem.  When I first came to Canada at age 6 the first school I went to the children were all given a spoonful of cod liver oil every morning.  I was excused because my father, a doctor, gave me another supplement., althougn in retrospect I probably would have been better off with the cod liver oil!

    • EileenH
      EileenH Anhaga

      Posted

      During WW2 and for some years afterwards vit D was added to various things until an industrial accident of some sort resulted in far too high levels being added to something and small children became ill (don't ask me for any other details, don't know them). The result was that European regulators banned the practice.

    • macas02
      macas02 Anhaga

      Posted

      I am going to give my age away now.....but when I was infant school in London about 1944 ish

      we used to get in queue and a teacher would give us a spoonful of Malt

      usually just one spoon to serve all...

       

    • Michdonn
      Michdonn macas02

      Posted

      Those were different times in the summer we all drank water from the rubber hose or the same cup or bottle on the sports field. When going to the beach it was not unusual to get a flat, tires on the cars were in poor shape, two flats and they would patch the tube. Life was simple?🙂

    • Anhaga
      Anhaga macas02

      Posted

      You know, Macas02, you just reminded me that when I was a small child in the UK (early 50s) I think I was given a spoonful of malt once a day.  I tried to find some info about it and I gather it was used to help boost calorie intake of children during and post war, as well as providing a few vitamins.  
    • macas02
      macas02 Anhaga

      Posted

      I,m smiling to myself thinking of the malt, which then reminded me of the "nit" nurse arriving to check our hair 'm very pleased to say I never had the dreaded nits...

    • DebbieHurts
      DebbieHurts macas02

      Posted

      What about the lumps of sugar to keep you from getting polio?  I can remember standing in line to get my sugar lump.

       

    • macas02
      macas02 DebbieHurts

      Posted

      I believe the polio vaccine on the sugar lump was started in 1962

      I would have been a very young" 20 something" so not meant for me.....

    • EileenH
      EileenH DebbieHurts

      Posted

      It was the mantra used in Australia: slip on a shirt, slap on a hat, slop on sun lotion...
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