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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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  • lodgerUK_NE
    lodgerUK_NE DebbieHurts

    Posted

    I am sorry to read your post and for the health problems you have encountered. I have three questions and would be grateful if you would take the time out to answer.

    Did you take Alendronic Acid, 

    Were you prescribed and given it when you were first diagnosed with PMR?

    What date were you diagnosed?

  • elizabeth40672
    elizabeth40672 DebbieHurts

    Posted

    Hi Debbie what you write scares me! I am on around 12mg of pred and have osteoporosis in my back. How did twisting fracture your back? I have been told to be aware of my bones but to live life normally. How can you do that if it is so easy to hurt yourself? I do weights at the gym and take vitamins and eat healthily. Not sure there is much more I can do. I hope you get better soon, its a horrid catch 22 situation we just have to live with it... Take care x 

     

    • lodgerUK_NE
      lodgerUK_NE elizabeth40672

      Posted

      Have you had Dexa scan - if not ask for one and insist, this tells you the 'state of  your bones' and should be done after six months on Pred.    Then once you know you have options................and the National Osteoporosis website has all the drugs and you can choose. Don't just take AA, research it.  And there is a thread on AA on this site.

    • elizabeth40672
      elizabeth40672 lodgerUK_NE

      Posted

      Yes had Dexa scan and positive in back and ostopina in hips. Different advice from different Dr's. One saying I should take Alendrotnic Acid another saying I shouldn't. I'm 50 so feel that I should put it off as long as I can so can really benefit when I need it. Wont have another scan for another 2 and a half years and anything can happen by then. 

    • lodgerUK_NE
      lodgerUK_NE elizabeth40672

      Posted

      That seems a long time to me, I had one every year whilst on pred for GCA.  So once a year for 5 years and the last one, one year after I had been in remission.

       

    • elizabeth40672
      elizabeth40672 lodgerUK_NE

      Posted

      I am due to go back to the doctors soon so will have another chat to her. I'm feeling ok at the moment but need to keep OP in mind. 

  • Michdonn
    Michdonn DebbieHurts

    Posted

    DebbieHurts, very sorry to hear of your problems. Could you tell us more about what you have taken for bone health and did you have a Bone Density Scan? Better luck on the rest of your journey. Think positive. 🙂

    • sandy65909
      sandy65909 Michdonn

      Posted

      I am a bit concerned because I have osteoporosis, had Prolio last year and now Dr. will only give me Reclast because she won't use Prolio when patient is on steroids. I am decreaseing Pred and went from 25mg to 24 mg in 2 weeks. I want to decrease another 1mg starting Wed. but I have more pain than usual today because I think I did too much this weekend. Any advise about decreasing? Should I try the 2 weeks method again  or 26 day DSNS method?  My rush is only because of osteoporosis but rather be safe than sorry. Thanks. 

    • Michdonn
      Michdonn sandy65909

      Posted

      sandy65909, as you know we are all different, I did to much last week, started to get PMR pain Friday afternoon. Was at 15 mg day at taking 12 in morning was going to take 3 at bedtime, up that to 8. Also took 20 Saturday and Sunday. Felt good last evening, reducing to 17.5 for 3 days, if no PMR pain will try reducing to 15 again. I think I am lucky normally I am PMR pain free. Keep smiling 🙂

    • sandy65909
      sandy65909 Michdonn

      Posted

      Yikes! I can't imagine varying my dose! I'm in a bit more pain so I'm just resting. Skipped the gym did more self care. Went to physical therapy. I guess I'm too inexperienced to be creative with my Pred. dose. I want a specific plan and don't want much deviation unless necessary. This illness is full of surprises! Thanks for the smiling advise! 

    • Michdonn
      Michdonn sandy65909

      Posted

      sandy65909, this past spring I was in a wheelchair, following directions, now I do what I think and tell my Rheumy after the fact. She gets upset, but I am doing what I need to do.

      Yes I am still smiling 🙂

    • sandy65909
      sandy65909 Michdonn

      Posted

      Glad you're smiling! I am def following your lead with my rheumy's blessing. She said to decrease slowly any way I want. Being new and experienced, I seek guidance from those ahead on this bumpy road! 

    • macas02
      macas02 sandy65909

      Posted

      Sandy I have tried Physio for my neck & shoulder pain but for me anyway it made my pain worse and I ended up with a flare! I was on 2mg of pred now on 10mg. I know we are all different  but perhaps the physio is just too much. I have had PMR for 7 years...

    • sandy65909
      sandy65909 macas02

      Posted

      My therapy is terrific...massage, heat, works on my wrist (tendinitis) and I do very light exercises to strengthen back and shoulders. So sorry to hear it made you worse.

      Hope you are feeling better. 7 yrs. is a long time!  Are you able to do what you like? I can't do much but a little light weights and short Zumba. I have morning and afternoon rest periods! I am not sleeping enough and can't nap. 

    • lodgerUK_NE
      lodgerUK_NE macas02

      Posted

      Bowen Technique  - I call it 'White Witchcraft'.

      Put 'Tom Bowen Australia' into your search engine.

      Non Invasive and the best thing about it is that if three one hour sessions for three consecutive weeks and no improvement, they will tell you - it is not for you. 

      If you do decide make sure you have a trained person and listed in the Bowen Practioners list.

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