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Osteoporosis, Prolia and what happens if you stop taking it.

Posted , 5 users are following.

Reeceregan
Reeceregan

Hi All,

i had my first Prolia injection early February. I was originally told I would only be taking it for 3 years. My rheumatologist has now confirmed it will be for life due to recent studies regarding what happens once you go off it. I’d love to know if anyone has been on Prolia for a few years, ...say 3...and then come off, and what has happened to them since. I know it has a half life, I was originally told it would be in my system for 5...but I could go off it after 3. I wonder if there’s anyone out there that is, say, 8 years post Prolia. Would love to hear your story. 

0 likes, 3 replies

3 Replies

  • faith87650
    faith87650 Reeceregan

    Posted

    I was on it for three years and had my last injection in July 2015.    According to my dexa scan I now have osteopenia whereas it was osteoporosis with a 30% chance of severe fracture over next few years.  So far no effects from stopping the Prolia.  Am pleased to be off it though.  I started to feel to unwell but couldn't be sure it was the Prolia or not. I disliked taking something that lasted for six months. Am having a break at the moment and  it has been suggested I go back on strontium renalate but that has been withdrawn from use so no idea what is next.  Prefer really just to take vit K2, magnesium and vit D as think they are better!  It can be so painful and debilitating.  I work really hard at  looking after myself as have 15 spinal fractures and can't bear the thought of another as end up on crutches for several months whilst they heal.  Problem is I did one sneezing once! I just wonder why so many people are getting it.  

    • Reeceregan
      Reeceregan faith87650

      Posted

      Thank you so much for replying Faith, your response has given me some encouragement. I consider myself one of the lucky ones who at 63 has never has a break or fracture, although severely sprained ankles (seperate occasions) resulting in badly torn ligaments and tendons may as well have broken. I do however have PMR and GCA and am on long term prednisone so after the last sprain in November I was sent for a dexa scan. My T-score was -4 with a 34% risk of a severe break in the coming years so I really wasn’t given much of a choice regarding the Prolia. I didn’t think 3 years was too bad but as mentioned the rheumy has now changed his tune. I do take all the supplements...Vitami  D3, K2, Calcium, magnesium, and fish oil, as well as walk a few kilometres when I can with a weighted vest, wrist weights and leg weights. Having the other two autoimmune diseases restrict what excercise I can do and if or when I can, and although I always did yoga I now have to be careful of bending or twisting.. so I have to chose my excercises  carefully. I’m hoping by the time I’m due for the next dexa scan I can just continue with the vitamins and supplements as you say. I am worried about the neucrosis of the jaw that is a side effect of the Prolia, I had a full dental checkup prior to the injection in February but I’ve broken two teeth since then requiring crowns so I’m hoping and praying I don’t need any extractions or root canal in the future as I’m told you can’t have any major dental work involving the jaw. Please keep me posted on your progress regarding having to take anything  more in the future. 15 previous fractures sounds absolutely horrific to me. I can’t fathom that pain. 

       

    • Anhaga
      Anhaga faith87650

      Posted

      You should be able to get strontium citrate as that is a "natural" form of strontium.  As far as I know the ranelate was simply a form made up by the drug company so they could patent the element and make money.  It's the strontium which is supposed to be helpful to the bones, not the rest of the compound, although I don't know how helpful it really is.  Can you manage to eat lots of leafy greens?  I think there is silica in some of those which is also useful.  And of course prunes for the boron....  

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