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Anyone used Prolia? For severe OP?

Posted , 15 users are following.

diana62138
diana62138

i have gone through the lot- HRT, Fosamax, Actonel, Zometa, Forteo for 2 and a half years and according to my doc the only treatment available for me now is Prolia. I don't like the sound of the side effects at all! Anyone been on Prolia and can tell me about their experiences?

2 likes, 44 replies

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  • kathleen65757
    kathleen65757 diana62138

    Posted

    No, sorry, I cannot because I refused to have it. I am wary of all the medications.

    Have you had the others apart from Prolia?

    I am in Australia.

    • diana62138
      diana62138 kathleen65757

      Posted

      Yes I've used all the others. Forteo was the most effective and I had no side effects. Now I have to try Prolia because there's nothing else for me to use! That's why I want to hear other people's experiences about it.
  • shaq26875
    shaq26875 diana62138

    Posted

    I too refused the prescribed yearly injection of zolendronic acid (Aclasta). i live in the middle east and here it seems if u have health insurance they love to do all sorts of tests when u may have gone in for a sore throat (money money money ??) Perhaps  i am being too sceptical as I was asked to do an endoscopy at my 1st visit to a gastroenterologist ( and diagnosed with Barretts Esophagus ) and suspected Sjogren's syndrom at my 1st visit to a rheumatologist (confirmed by a blood test) and secondary cataract in 1 of my eyes when i saw an opthamologist (again at a 1st visit)
  • Mary_D_23339
    Mary_D_23339 diana62138

    Posted

    I too have severe osteoporosis and have now been on Prolia for three years. I have NO side effects.

    There will be many people who post on this site who are totally against any drugs because of the side effects but I base my decision to take this drug on personal experience. 

    My mother had a fall, damaged her spine and ended up in a wheelchair in the most dreadful pain. She took no drugs for osteoporosis but ended her years on very strong pain killers.

    Prolia is different from other osteoporotic drugs (been there - too many nasty side effects). This drug works by preventing the osteoclasts from maturing or resorbing bone, so it’s a completely different mechanism of action.

    Bisphosphonates linger in the bone long after you stop them whereas Prolia  is completely removed or gone from the body 6-12 months after the last injection, hence the six monthly injections

    Prolia may lower the calcium levels in your blood. If you have low blood calcium, it may get worse during treatment. Your blood calcium must be checked  before you receive Prolia.  My doctor will not sanction my six monthly injection until I have had a blood test and she has checked the results.

    I'm sure you already take adequate calcium supplements (1200 mg from diet and supplement combined) and vitamin D3 (800-2000 IU daily). In addition to calcium with magnesium I also take the vitamin K2 (helps to regulate calcium in the body)

    It is not known if the use of Prolia® over a long period of time may cause slow healing of broken bones. The most common side effects of Prolia are back pain, pain in your arms and legs, high cholesterol, muscle pain, and bladder infection

    In the first three years of a five-year clinical trial there was only a small increase in the risk of skin infections and eczema, but this risk was not seen in the last two years of the study.

    I know I am fortunate in not having any side effects - at least none of which I am aware,  but I saw my mother who took no drugs for osteoporosis, slowly detioriate , frustrated by her inability to walk and in dreadful pain which affected her whole wellbeing.

    If you decide to stop taking Prolia, as with most medications, its benefits will go away over time.

    Good luck, do your own research and go with what your soul tells you!

     

    • diana62138
      diana62138 Mary_D_23339

      Posted

      Hi Mary!

      Thank you for all your information. My mother also suffered from OP wearing an uncomfortable corset for many years and suffering from terrible back pain. 

      I will take into account all of your experience with Prolia before making my final decision with my doctor.

      Thanks!

  • penelope10875
    penelope10875 diana62138

    Posted

    I have had one Prolia so far, with no problems. I was a little anxious, but fractures hurt!
    • jodybelle
      jodybelle penelope10875

      Posted

      Hi --- I see you're taking prolia to help you with your fractures. Do you have osteogenesis Imperfecta? My daughter does and I was researching prolia for her as she has been on the bishophonate pamidronate since she's been born -/ 15 years. For now I decided to keep her on pamidronate but I would love to hear about your experience.
    • penelope10875
      penelope10875 diana62138

      Posted

      Actually I just have Osteopenia, but I have had 2 spinal fractures. I have been on pred for 3.5 years now and as I'm having trouble getting below 7.5, I expect it will be at least another year before I get off them In view of all this the Osteoperosis clinic felt I should have the prolia. As I said I was reluctant, but have had no side effects and think it's worth it for the future of my bones.

      I should say, I am a retired Nurse and I don't know any retired Nurses who dont have damaged/vulnerable backs! I also fell off a ot of horses in my youth!

    • kathleen65757
      kathleen65757 penelope10875

      Posted

      In Australia, you must have osteoporosis to even be considered to have any of the drugs. Osteopenia would not be a enough even with fractures.

      The fact that you have had fractures is interesting, do you think that your bones have other issues?

      I wish you well and that you have no further breaks.

    • shaq26875
      shaq26875 penelope10875

      Posted

      oh my god , 2 spinal fractures with osteopenia ? I had a severe fall and survived fractureless ...as somebody said on another thread..'Maybe bone strengh and bone density are 2 differnt things.'
    • kathleen65757
      kathleen65757 shaq26875

      Posted

      I think that was me or at least I was one of the people who said that.

      My back X-rays did not show my bones to be weak and I have tiny bones which would probably affect the bone density readings.

      I am beginning to think other issues are involved when people with osteopenia break bones but others with osteoporosis do not.

      I am now paranoid about falling but when I reflect I was always falling because of wet floors or toppling over things on the floor that I did not notice and yet no broken bones. If I had never found out about my osteoporosis I think I would be happier.

      Many people in Australia never have a bone density scan and carry on merrily oblivious. 

      Scans are not free in Australia until 70 so people do not think about it.

    • shaq26875
      shaq26875 kathleen65757

      Posted

      come to think of it Kathleen i think it was you who said that.

      I too have always tripped  over things, or fallen off furniture trying to get down and all without any fractures and because of this I decided not to take the yearly ZA infusion after looking at all the side effects. If I had suffered fractures I probably would have taken it. I dont even know why the rheum ssent me for a dexa (apart from my age ...63 at the time) and he thought i was too thin !!! If I hadnt had the scan I would not have known i had osteoporosis and it wouldnt have mattered.

    • kathleen65757
      kathleen65757 shaq26875

      Posted

      Same here. Now I am without confidence! 

      Ignorance may be bliss after all!

      I fell down a very long staircase in 2001 and suffered no breaks but needed rotator cuff surgery on my shoulder...all soft tissue damage!

      I was very accident prone as I would rush in and trip!

      I do have two herniated discs in lumbar section of back causing nerve problems in the sacroiliac and that does cause me much anx!

    • shaq26875
      shaq26875 kathleen65757

      Posted

      i know what you mean about lack of confidence; worse is my husband who is always cautioning me about 'falling' and how we must not forget we r not young anymore (I am now 64 and he is 62) that does irritate me and does stop me in case i do fall (I told You so scenario). i had a slipped disc when i was in my thirties and I get sciatica and my back does give me bother if I walk a lot or gentle jog for more than half an hour as does lifting anything at all heavy like a heavy shopping bag 
    • kathleen65757
      kathleen65757 shaq26875

      Posted

      Sciatica is awful. My husband's cousin who is very active has been disabled with that. He has just had an op to remove part of the bulging disc and they found a damaged nerve. Now he has drop foot.

      Mine is something similar but affects the sacroiliac and I cannot sit on a normal chair or walk far. I am trying Bowen therapy in an endeavour to improve it.

    • penelope10875
      penelope10875 diana62138

      Posted

      About 12 weeks ago. The trouble is, I have so many aches and pains anyway, I can't really say none of them are Prolia, I suppose.
    • diana62138
      diana62138 kathleen65757

      Posted

      I'm genetically predisposed to having osteoporosis is what I meant. My mother had it, my sisters have osteopenia and my daughters already have low bone density. Yes OP is osteoporosis as used by many people, even during this discussion.

      of course I've had Dexa scans every year for the last 20 years at least.

      All I want to know are people's experiences with Prolia please.

      Thanks for your interest!

    • kathleen65757
      kathleen65757 diana62138

      Posted

      I apologise if I have offended. It just got a bit confusing there for a while.

      I have no experience with Prolia but I did consider having it but my oral surgeon was not a fan of it so I decided against it.

      Also, unless your t scores are very bad like -4 or so I would hesitate having it.

      I know I will need dental work including extractions in the future which also influenced my decision not to have it.

      Whatever you decide I wish you well.

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