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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

44 Replies

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  • Juno-Irl-Dub
    Juno-Irl-Dub diana62138

    Posted

    Hi Diana, I am amazed at the range of OP meds. you have taken. Can I ask you how many years in total have you taken Bisphosphonates (ie, Fosamax, Actonel, and Zometa)?  I have briefly taken Actonel and now am shortly finishing the 2-year Forteo course. And, like you, I have had no significant side-effects from Forteo either but also have severe OP diagnosed 2 years ago (age 62). 

    Did you make any gains from Forteo? I do know that the advice on the NOF forum is that Prolia is the preferred option to consolidate gains from Forteo (2nd. choice is a bisphosphonate) But  you've been using similiar drugs for a long time (??) so maybe your doc. just doesn't want to (or shouldn't) continue any of the other drugs. Do talk it over thoroughly with your doctor again before you do anything.

    Re. Prolia and side-effects: All drugs have side-effects and some people have written on forums like this about serious ones. It's a relatively new drug (10 years - 5 before it got FDA approva, and 5 since). Mary D above said it very well in her post about risk/benefit of meds. and her own conclusion and decision.

    Can I ask you how bad is your OP (T-score)? And are you a very mature, mature. or fairly young person?. ( I'm tring to be diplomatic here.You really don't have to answer this!!).

    Take care,   J

     

    • diana62138
      diana62138 Juno-Irl-Dub

      Posted

      hi! I think you'd consider me a young person in my mid- 60s! I had early menopause the same as my mum and was diagnosed with OP probably around my early 50s so I started with my list of Op medis early on. I was on Fosamax a very short time because it upset al my gastrointestinal system. Then I changed to Actonel for about 5 years and that was kinder but gave me headaches and acid reflux. Then  twice with Zometa so you could say I'm well- finished with the bisphosphonates. There's nothing else for me to take apart from the Prolia! Or Strontium renalate that my doc doesn't seem to like for some reason. I'm finishing a two and a half year stint with Forteo that I am very happy with. My last scan showed great improvement on my back bone but not so good on my hip. When asked the doc said this was normal with Forteo.

      OK so what about Prolia? How long can I take it for? I have asthma and am very allergic to many medicines etc so will it affect my immune system? I'm seeing doc tomorrow so please send your comments quickly!

      Thanks!,

    • Juno-Irl-Dub
      Juno-Irl-Dub diana62138

      Posted

      Hi diana,  Your doc. is certainly right when he says that Forteo rebuilds bone mostly in the spine and is best used in patients with severe  OP and/ or those who have had some spine fractures. My spine readings improved by 11% after one year of injections.  So you've done that. And bisphosphonates are out for you now. I guess that does leave Prolia (which works differently to the BFs) but does prevent fractures and will build on the work done by the Forteo. Another possibility is a hormone med. called Evista which is also good. The endocrinologist on the NOF forum advises patients after Forteo to take 1) Prolia 2) A BF or 3) Evista (or similiar). All will help keep your gains from Forteo but only your doc. who knows your history well could advise effectively. I do know that you shouldn't wait too long after finishing Forteo to start another med.  . . . 

      Good luck, let us know how you get on. J

      PS I hope this post isn't too late. I think I'm on the other side of the Atlantic!

    • jennifer1946
      jennifer1946 diana62138

      Posted

      Hello Diana...I came on here searching for a cause of sudden unexplained bronchial asthma..I  had my first injection of Prolia 6 weeks ago and this started up 3 weeks ago.Lung specialists have tried everything...antibiotics.inhalers...I even bought a nebuliser and use it 6 times a day...I've been to A& E twice over the last 3 days....they are all baffled.Now I am down to go to the asthma clinic end of June.I can only imagine Prolia is the cause as everything else has been eliminated and all this stuff I have taken would be enough to make things improve within a couple of days usually.I can't WAIT fro the 6 months to be up..My chemist told me that prunes help to build bone but you have to eat 8-10 a day and ,although I intended to keep it up I haven't,! I read somewhere that one day there should be a drug made from prunes so I am going to live in hope for that.Have you started Prolia? Hope you are doing alright if you have.Warm regards.
  • kathleen65757
    kathleen65757 diana62138

    Posted

    Diana, what is your t score?

    My worst one is -4.3 at the base of the spine.

    • diana62138
      diana62138 kathleen65757

      Posted

      sorry can't remember but one vertebra is very low and the others moved up nearly to osteopenia with the Forteo.
  • Luesch59
    Luesch59 diana62138

    Posted

    I got sever headaches for 8 months the type where pins were being pushed into my skull.
  • Joe131364
    Joe131364 diana62138

    Posted

    I am on Reclast IV once a year. The first infusion was miserable with all the side effects. I should have offered atleast Narco for three weeks.

    Prolia is the med of last resort.

  • penelope10875
    penelope10875 diana62138

    Posted

    Yes I have had one dose so far with no side effects.

    Anything is worth trying, spinal fractures are very painful!

  • Mary_D_23339
    Mary_D_23339 diana62138

    Posted

    Hi Diana

    Sorry to hear you've tried every medication out there.  

    I've just had my sixth Prolia injection and still no side effects (Not that I'm waiting around for any!) .

    My T score in my spine has gone from -5.3 to -4.9. I exercise quite a bit - gym - strength training and weight bearing exercises, walk a lot, yoga  once a week (helps with balance) and take calcium with magnesium and boron, Vitamin K2 and a vitamin D3 via  liquid dropper. 

    Previous osteoporosis medication damaged my throat so I break open the capsules and mix into a small amount of yogurt.  Tastes horrible but tell myself it doesn't !!!

    Apart from when I do too much gardening I am in no pain at all - Long may it continue.  I'm in my mid seventies. 

    Good luck .  

    • Mary_D_23339
      Mary_D_23339 kathleen65757

      Posted

      Hardly dare say it, but no I haven't broken any bones.

      I try to be careful, particularly when th ground is icy and I've given up horse riding but apart from that I often forget I have osteoporosis.

      I do think remaining positive helps and having lots of younger friends!!!

      I realise I am very fortunate - long may it remain so.

      Take care.

    • kathleen65757
      kathleen65757 Mary_D_23339

      Posted

      That is so interesting. It makes me wonder about the correlation between bone density and actual broken bones!

      Your results are still high even with the medication and supplements.

       

    • Mary_D_23339
      Mary_D_23339 kathleen65757

      Posted

      Me too Kathleen, I have two friends who have both fallen and broken their wrists, yet neither has osteoporosis.

      My osteoporosis is in my genes, even though I try to eat a healthy diet and have been very aware of my family history - unfortunately it wasn't formally diagnosed until about ten years ago.

      I would love to have the confidence you have in not taking any medication but to be honest , especially as I don't have any known side efects, it scares me now to go down the natural route.

    • kathleen65757
      kathleen65757 Mary_D_23339

      Posted

      I think everyone makes the right decision for them. My gut told me not to start.

      Others take the drugs and are happy they did.

      So far, I am not regretting it, and hope that holds!

    • Mary_D_23339
      Mary_D_23339 kathleen65757

      Posted

      Do please keep this forum posted on any improvements on your t score. 

      I'm not due another dexa scan for another twelve months (NHS cuts!), so am seriously thinking of having one undertaken privately. - I don't see the point of taking drugs (with or without side effects) unless one can see the results  and - hopefuly - an improvement in one's T score. 

      In the meantime, I wish you well. 

    • kathleen65757
      kathleen65757 Mary_D_23339

      Posted

      Good idea to pay for a Dexa scan as they are not very dear, about $60 in Australia, so worth having them annually. 

      I will be able to tell if I have had any success in another year.

      I need to be more motivated exercise wise though!

      Studies need to be undertaken to see why people break bones and also the importance of supplements in the diet.

       

    • Lambchop2
      Lambchop2 Mary_D_23339

      Posted

      Well I am new to this forum but was put on Actonel even before I had osteopenia by my doctor when the beginning stages of losing bone density was starting.  I was on it for around 5 years but when all of the bad press came out about that drug was taken off.  Now 5 years later, I am in osteopenia with t scores at -1.7.  My doctor now wants to put me on the prolia injections he says to avoid going into the osteoporosis stage and I am wondering if this is premature.  What are the thoughts of people on this forum??  I also take the usual calcium and vitamin D supplements but am not good with exercise beyond walking.  I do not do weight-bearing exercise though. So I'm wondering if I should go on the shots preventatively as my doctor is suggesting??

    • kathleen65757
      kathleen65757 Lambchop2

      Posted

      I would not. I have far worse results and would not take it. 

      Add vitamin K2 and magnesium to your vitamin D and calcium. K2 makes sure the calcium gets to your bones.

      Have natural foods like prunes, avocados, bone broth, skin of cucumber, lots of leafy greens, fruit and vegetables as well as all the rest you need for a balanced diet.

      Check out all the good advice on here and read up on your own as well.

      Walk or do other weight bearing exercises you can manage. Avoid falls and try to avoid stress.

      Osteopenia does not ncessarily lead to osteoporosis.

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