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Anhaga

Denosumab problems

Discontinuing denosumab (Prolia) can lead to vertebral fracture, apparently not related to the underlying osteoporosis, but to the development of microcracks in the bones from denosumab. Advice is to replace denosumab, not go cold turkey off the med. Sounds like this drug is ripe for lawsuits, and perhaps should be discontinued. 

https://www.ncbi.nlm.nih.gov/pubmed/27732330

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  • Anhaga

    This is very scary.  I had my last Prolia injection in February and opted not to have another as the last one seemed to affect me negatively: sore muscles, bones and stiffness.  What is one supposed to do??

    • stefania3

      I believe you need to see your doctor, after reading about this on the internet, there's more info than just the item I posted.  You probably should be given a DXA scan and go from there.  I doubt if everyone has the same reaction, but it certainly seems a possibility everyone on Prolia needs to be aware of.  It's relatively new information, so a lot of people come off Prolia once their bone density is deemed satisfactory, and that appears to be putting them at risk.  I've been saying all along that even people on drugs should be doing everything they can to improve their bone density naturally, and it would be really interesting to know if this has a protective effect or not.  

    • Anhaga

      Hello Anhaga, I have a DEXA every 2 years, next one due next May. I also take calcium with vitamin D every day and actually eat a healthy diet.  I have osteopenia, and my T score had improved slightly with Prolia. 

    • stefania3

      Can you add Vitamin K2 to your supplements, not K1, as most of us are deficient in it, and it's the vitamin which, along with magnesium, sends the calcium into the bones?

  • Anhaga

    I have just had to change my GP because my wonderful one is moving to another State. The new one asked me if I was having Prolia and my response was a resounding ‘no!’ I mentioned vitamin K2 and she was not surprised so doctors are learning that people are researching and refusing the drugs. She just said I will have a Dexa scan in a couple of years but I will ask for one sooner than that just to check on whether I am making any headway into reducing my tscores.

    I knew not to use Prolia and that it was even worse than AA or others.

    Thank you for this research Anhaga. My sister only tolerated it for one six month dose and she could not wait for the time to be up. Hopefully, one dose will not be too bad. Before that, she had taken AA for about a year and was very unwell. She has something wrong with oesophageas and should never have even been put on AA.

    • kathleen65757

      I had heard that denosumab actually poisons the osteoclasts, doesn't just retard their action as AA et co do.  Was shocked to learn of this other problem.  Why oh why are the drug companies allowed to use a vulnerable aging population as 1) cash cows and b) guinea pigs?

    • Anhaga

      It is shocking. I have a number of other conditions and I weigh up the pros and cons about medication and management. But this osteoporosis is a whole new ball game. It is out there on its own for using people and not caring about what it is doing to people. 

      Doctors are just starting to catch up now on research that their patients have been doing. My GP admitted to me that she does not have the time to research sufficiently to know about everything and I have been able to tell her some information that she was unaware of, and she appreciated that.

      Obviously, patients are refusing the drugs for osteoporosis because my new GP never blinked when I said I would not consider Prolia.

  • Anhaga

    Thanks for this link -I see the consultant tomorrow re Denosumab- I think this is very significant study.  Whether she thinks so or not is another thing! 

    • barbara98742

      Try not to worry too much about this study. Yes, nine patients were found to have fine cracks in their vertebrae after stopping Denosuma but each of these patients were being treated with a much higher dose of this drug than we would be prescribed, for OP. Each one was being treated for bone cancer and had been exposed to high levels of radiation treatment for their cancer. I too have had radiation treatment and therefore was not given this particular drug. Of course it is scarey when we read something like this, but when we look at the full story, it does not really relate to OP patients, but to these poor people who have arrived at a situation where only a miracle can help.i hope your professional answered your questions, to your satisfaction.

  • Anhaga

    Hi Anhaga, thank you for reporting on this published paper on Prolia and it's worrying reports of a significant number of vertebral fractures occurring in a specific study group.

    I remember when I was diagnosed with severe osteoporosis (OP) in 2013 that Prolia was the newest medication

    (I was prescribed Forteo) and there seemed to be no concensus among the medics as to how long this treatment should last - some suggested 5 years for lower risk patients and 10 years for those at high risk, others suggested it could be used indefinitely. . . . I don't know if this advice still holds or if the manufacturer now issues different precautions. 

    I had a quick look at the abstract of the paper you mentioned and a couple of observations seem relevant. 

    First, as Alison has already commented, the patients studied here were a different cohort to the typical patient with OP who is prescribed Prolia  - these were patients who were recovering from cancer and were therefore being treated for the effect a chemotherapy regime can have on bones (OP) and also, their Prolia dosage would have been higher than normal. Next, the study mentioned 9 patients who had repeated fractures which happened rapidly (9 - 16 months) after their last Prolia injection. What percentage was that of the total number of patients involved in the study -  ie. are we talking about 10% of the patients studied or 20% or 50% or 90% ???  

    Obviously this shows that more research is needed as to how to treat patients after their Prolia medication is stopped. It may be that they may need to move to an alternative therapy at this point. Perhaps we are looking here at a very new drug which is really effective in reducing fractures while in use but because of it's short time on the market the issue of the ' after use' period has not been investigated. I know that, with Forteo, it is known that to consolidate any increased bone density gained while on the drug, you are strongly advised to continue bisphosphonate therapy for a few years after stopping it.   

    I briefly had a look at when the FDA approved some of the OP drugs that we are familiar with - some of you may be interested in this:

    PROLIA - approved in 2011

    RECLAST - approved in 2007

    ACTONEL - approved in 2002

    FORTEO - approved in 2002

    FOSAMAX - approved in 1995.

    Kind regards,  J

     

     

    • Juno-Irl-Dub

      There is other info on the Internet.  I posted this as it was certain to pass moderation.  Frankly I would be suspicious of any medication which poisons the osteoclasts, even worse than AA which retards their action.  Learning of this potential side effect, which is eerily like that now admitted for AA and other bisphosphonates, makes me wonder just how carefully they actually test these things before loosing them on an unsuspecting public. 

    • Anhaga

      There is heaps of information online about Prolia and I would never have this drug foisted on me. It is not an alternative to AA it is even more extreme. Just the comments from people on here over time is evidence. My  oral specialist even said it was riskier and he would know as he treats people with devastating results of taking Prolia in Australia and overseas.

  • Anhaga

    I have had two Prolia injections as I am pre osteoporosis and have had two fractures in right ankle from two separate falls ten years apart and one compressed fracture in my spine also from a fall. GP suggested Prolia to help prevent further fractures, I am 70 have had two bouts of breast cancer. First time involved surgery, chemo and radiotherapy. Latest, surgery and on Femara as preventative treatment, also had two stents in artery and hashimoto’s disease-thyroid so also taking thyroxine. I have always been energetic, active, walking swimming gardening etc. I now have no energy, tired constantly, very weak in the legs constantly feel I’m going to fall over, heart palpitations that can last one to two days, confusion etc.  Echo cardio is ok, full blood tests are very good, I’m at a loss as I feel like I’ve turned into an old person over the last six months and I’m now wondering if it’s related to my last prolia injection.  I’m very reluctant to have the next one which is now due but also concerned about what may happen in regards to spinal fractures if I don’t. Wish I had researched this before I had it. 

    • sandra30136

      I am sure the doctors have been coming up with a bridging treatment.   I think there are also organizations in most countries which offer counselling and information over a helpline, so you can get some advice and reassurance by contacting the one in your country.  I hear really good things about the organization in the UK, although sometimes apparently you have to try more than once to get the person who is right for you!  It is encouraging to me that more attention is being paid to the fact that women in particular get treatments which may do them harm because of incomplete research, or in some cases (probably not with Prolia) lack of full disclosure regarding possible outcomes.  That doesn't help those of us already on a rocky path, however.  Please get in touch with a doctor or organization who can give you good advice and reassurance. ❤  

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