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Prolia injections - osteoporosis

Posted , 18 users are following.

FlipDover_Aust
FlipDover_Aust

I was just at the Dr to discuss my latest CRP results (better than expected!) and she asked me if I'd had my bi-annual Prolia injection (I have). when I got back to work I thought I'd do a bit of digging and I found a couple of things that make me wonder if Prolia may have contributed to my PMR developing. Just my imagination but is there a coincidence? Anyone else had Prolia injections?

Check this out:

Prolia was approved in 2010 for the treatment of osteoporosis and for preventing new bone fractures especially in postmenopausal women. This new drug modifies the regulatory control of the immune system over bone remodeling. Its cutting-edge design is matched by the ease of its twice-a-year administration. But Prolia is far from the wonder drug it is being promoted as. By modifying the immune system, it impairs general immune response. And curiously, Prolia can kill off the bones of the jaw and cause hip bone fractures.......

The lack of long-term safety studies for Prolia makes it highly dangerous. Reading the product’s safety information on the manufacturer’s website is particularly depressing. Amgen lists a number of horrifying adverse effects of Prolia.

One can only wonder what other side effects are there if the manufacturer admits to such profound damages.

The severity of the identified side effects of this drug makes it even worse than bisphosphonates. And only time will tell what new side effects will emerge in a decade when independent safety studies are published.

Most of the side effects of Prolia are caused by its negative influence on bone remodeling and its interference with the roles of RANKL in the immune system.

RANKL, for example, is required by T helper cells. By inhibiting such immune cells, Prolia increases the chances of infections, hypersensitivity reactions and autoimmune diseases.

Even the FDA raised concerns about the effect of Prolia on important immune cells and cytokines. But then, the regulatory body approved the drug a year later.

While the disruption of the immune system is terrible, the effect of Prolia on bone remodeling is simply unforgivable. Even Amgen admits on the product page that Prolia can cause thigh bone fractures and osteonecrosis of the jaw bone.

7 likes, 44 replies

44 Replies

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  • Judygirl
    Judygirl FlipDover_Aust

    Posted

    It is my opinion the more medications ingested the more

    problems we have.  The body is a wonderful instrument

    and it will do it's very best - sometimes with a little help,

    in the case of PMR prednisone is the only drug I know of

    that helps.   After two and half years I am down to 4mgs.

    just can't seem to get lower, but am holding my own until

    my body tells me to try 3mgs.   I am sometimes a little stiff

    and tired but at 87 I feel blessed.   Use common sense and

    listen to your body, if you're tired rest, if your stiff go for a 

    short walk or just stretch - no fretting which only makes 

    things worse.  My love to all.

    • tina-uk_cwall
      tina-uk_cwall Judygirl

      Posted

      Hello judygirl, you sound like one chilled out dude! Your advise is great. Hopefully I'll be down to 4mgs at the 21/2 mark but if I'm not, never mind. I am happy that you are recovering well. All the best, christina 
    • judytal
      judytal Judygirl

      Posted

      Judygirl,   I so agree with you.  The body is a wonder- and wonderful ...  I believe we sometimes get in the way...

      best. Judy 

    • bronwyn97278
      bronwyn97278 Judygirl

      Posted

      Yes Judygirl; you are doing marvellously for 87.....and I agree with all the comments re taking drugs, just because the doc says to....why take something for some thing if it doesn't exist, yet??? Gosh, if we look at all the women in the world and compared that total to the amount of women who DO have Osteoporosis.....then is it really necessary to take a drug that tells us that a "side affect" can be  a ?fracture of hip/pelvis. (I think I would rather try a better diet, say some Soya products.  From what I know, the asian ladies have many fewer side affects than Europeans, and all due to foods cooked with Soya Bean Products....also less bowel cancers, less menopausal probs and the list goes on)....live and let life take us where it will, and then worry???  Once again, I say thankyou to Eileen for her sensible revelations.....Bron
  • FlipDover_Aust
    FlipDover_Aust

    Posted

    Here's the rub - I'm only 51, have great bone density and I have no need for Prolia!!

    I'm really quite upset to be honest. I'll be doing some more research.

    It's too late to reverse what ever triggered my PMR but I need to educate myself more about medications.

    (Elieen, any push in the right direction welcome!)

    • tina-uk_cwall
      tina-uk_cwall FlipDover_Aust

      Posted

      Hi flipdover, I was automatically put on AA following my diagnosis of PMR. Like you I was only 52 at the time and had never had a bone density test. I took it religiously for 11 months. Following a discussion about AA on this forum I asked my rheumatologist if I could stop taking it, and he agreed and said that he didn't know why I'd been given it and he only ever puts his patients that are over 75 on it. As you say we can't undo what's been done but by not taking it I at least can hope I've minimised what could be done in the future. Good luck, regards, christina 
    • EileenH
      EileenH FlipDover_Aust

      Posted

      Then what on earth are you on Prolia for? It is for use if there is a problem - but the other bisphosphonates were flogged as a wonderful way of prevention, totally safe, guaranteed to prevent hip fractures. Which is tosh of course because they couldn't have known the real longterm effects - which is the same, by the way, for ANY new drug. You will hear the upsides (maybe upsides, because they are always exaggerated) and rarely about the downsides. It's called successful marketing - I have translated many final reports of marketing studies on new drugs. Reading what the doctors doing the trials say is often quite revealing!

      They have said for a while Prolia is only for use for 2 years - they obviously suspected more was not good. The UK guidelines for use of "bone protection" alongside pred are use it for over-65s I think - under that, only after a dexascan shows it is needed.

      Interesting report published in the UK today about unnecessary use of drugs by GPs which are possibly killing more patients than benefitting them. It was sleeping pills, antiidepressants and BP meds for mildly elevated BP that were mainly mentioned on the TV article - but anything that is pushed by the drug rep flows from the prescriber's pen. Of course some of it is ignorance on their part - specialists in any of the fields probably actually use less of these medications. The call in the report is for the GPs to include the patient in the discussion as to whether the medication is worth it - great, but WE all know the usual response to THAT!

  • faith87650
    faith87650 FlipDover_Aust

    Posted

    i have been taking Denosumab injections for four years now.  For the last two months I have had a sore throat, my femur aches, my jaw aches and have weight gain that i cannot shift.  I was on Amitriptyline which I stopped a couple of weeks ago in the vain hope of losing some weight so am now going to discuss with GP but will be stopping the injections as am sure my complaints are due to side effects.  Years ago I took Alendronate and had dreadful side effects that put me in bed for five days out of seven.  It took them three/four months to work out it was the drug so am very concerned that I am reacting to the injections now.  Anyone else had side effects?

     

    • EileenH
      EileenH faith87650

      Posted

      If you have jaw pain and femoral pain do please see a doctor and get that checked out.

      I don't recognise those as typical side effects (but google won't play so I can't check) - but always remember that it doesn't stop you having something else.

    • nancy83250
      nancy83250 faith87650

      Posted

      I took forteo injections for the full 24 months allowed due to severe osteoporosis with fractures of wrist and lower leg which required two plates and 9 screw, 2fixator screw and 2vacuum seals because they couldn't find enough good bone to secure the screws to. After that I have been on promise injections for 2 years now. I suffer from weight gain, muscle aches in both upper arms, and a rare form of neuropathy that causes severe tingling, numbness, and itching under the skin and my upper GI tract. The only thing that has controlled it is lyrica , which hads added to the weight gain. I have tried to loose but 10 lbs is all I can ever get off which after a week or two comes right back. The neuropathy itching returned after 8 months of taking the lyrica. I was finally given Sinclair which has stopped the itching again. I know the side effects can be very troubling, however, I am 61 years old and have always been very active. I cannot tolerate the other medications due to having had surgery for Barrett's esophagus. This leaves me basically only two choices. Stay in promise or break. So, despite the side effects and unknown long term side effects, I choose to have the longest quality of living verses a wheel chair until I finally have a break that cannot be fixed. This would inevitably lead to a more earlier death than which would result from the prolia. So after all the research I have done, I choose the prolia.

  • faith87650
    faith87650 FlipDover_Aust

    Posted

    I have been looked after by a world expert in osteoporosis.  He lectures all over the world and does an awful lot of research.  He has been fantastic and I have no doubts about his recommendations.  My concerns are only that I think I am reacting and I have an interest in the side effects as everyone is differnt.  Please be careful, people on here giving advice. It can be very dangerous.

     

  • jennifer_45307
    jennifer_45307 FlipDover_Aust

    Posted

    Hi, I've just had one injection of prolia (dinosumab), back in October, but I'm getting Atrial fibrillation, and have just discovered that this is a side effect of the drug. I'm wondering if it will stop at the end of my six months?

    I did read about this before I went ahead with the treatment but no medical person warned me, it was just through searching on the internet.

    Has anyone else had these problems with this drug?

    • jennifer_45307
      jennifer_45307 FlipDover_Aust

      Posted

      Don't blame you but do you mind me asking what you are doing instead to boost your bones? I'm thinking of stopping too.

    • EileenH
      EileenH jennifer_45307

      Posted

      A/F is quite common at our age - and it can be caused by the autoimmune part of PMR. I developed it in the early days of PMR and it was nothing to do with taking bisphosphonates - there has been some suggestion a/f may be caused by all of that class of drugs and Prolia counts as a bisphosphonate. However - it was discounted as being significant as described in this paper:

      Safety and tolerability of denosumab for the treatment of postmenopausal osteoporosis by E Michael Lewiecki

      However - it all depends on what your dexascan shows. It is not recommended bisphosphonates be used without good reason. 

      Anhaga is the person to ask about boosting bone density without drugs - she has got her bone density from -2.1 (needs treating, review in 1 year) to -1.6 (no treatment needed, review in 3-5 years) in a year by diet and exercise.

       

    • jennifer_45307
      jennifer_45307 EileenH

      Posted

      Hi Eileen, very interesting but my AF started a month after taking the denosumab although I am prone to getting it after drinking tea that is not enough decaf but it has become worse since my injection in Octoberand I remember reading about the connection.

      Please can you tell me how to get in touch with Anhaga. Her lifestyle sounds interesting.

      Thank you for your reply and keep well. Are you still on the denosumab?

    • EileenH
      EileenH jennifer_45307

      Posted

      I'm not on denosumab - my bone density is perfectly acceptable and has only fallen slightly during 7 years on pred. I took 4 alendronic acid (Fosamax) tablets and then discussed it with a different GP who agreed we should wait until I got my bone density result. 

      I developed a/f as a side effect of an i.v. drug (rare but known) - but once it was sorted out and managed I realised that actually the palpitations I'd had very occasionally for the previous 7 years had in fact been a/f. Most had been very mild and didn't last long - but they have gone now.

      I doubt Anhaga will see this thread as it is from before she joined the forum but if you start a new thread about bone density she will almost certainly respond - she is in Canada so is later arriving for the day!

      Or you could respond to one of her posts on a much newer thread.

    • FlipDover_Aust
      FlipDover_Aust

      Posted

      I don't need to! that's the irony of the thing. My GP wanted me to have them as a 'prevenative'.... I'm 53 and have great bone density (proved by a DEXA scan AFTER I refused to have the Prolia!)

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