Bone density drugs

Was the prolia the first Osteoporosis drug you were prescribed?

Babby, I understand your frustration. If I let it, my anger over this would consume me every day. Deep down I know this negativity would not be good for my bone health or my overall health.
All we can do is the best we can do every day with the cards we’ve been dealt.
If you do nothing after stopping prolia the chances are high that you will have a rebound fracture. That’s why there is a black box warning on this drug. The risk is real, and it’s painful.
Do what needs to be done to avoid the fractures.
Here’s what I’ve realized over the last 7 years I’ve been living in this osteoporosis drug nightmare- once you start any of these drugs you will need to be on them the rest of your life, except for the occasional “drug holiday” if you are lucky.
If I had it to do over again, I would not have started any drug until much later in life. I was only 59 when I was given prolia as my first treatment. Also, I would have started hormone replacement therapy early in menopause. I believe all my issues would have been negated if I had been given that option.
I know you are angry by all this, so many of us are, it’s hard, but we have to try and move forward using the knowledge from places like this group and our own research and take back control of our health decisions.
Please let us know how you are doing. We are here to hold each other up.

I am sorry you are having to go through this. I can’t figure out why they continue to prescribe these drugs and not explain that this is for life because of the risk for fractures if you stop. They themselves wouldn’t take them or encourage their family members to take these drugs.

Yes. When I first took it, it was in 2009 prescribed by a different physician. I experienced terrible pain and they said I may be allergic and recommended I don’t take it again. I transferred healthcare to Kaiser in 2011 and I started receiving Prolia shots in 2021. I told my doctor the reaction to medication I had and she said she thought that we should try again because I have no disk space at all due to Spondylolisthesis. So after complaining and having teeth extractions over the last year and a half as well, here I am. I don’t know.

Yes- no choice all the DRs were adamant about taking it- and the charge for the shot is about $2400 I read- of course I have medicare and supplement- then they pooh poohed my reactions -signficant hair loss, bleeding gums cracking joints and bloatedness-on and on

@babby yes, as far as I know you do have to go on a relay drug when coming off Prolia, especially after several doses.

I found out about the side effects of Prolia just after my first dose, and refused the second one six months later, and any subsequent doses of course. I took nothing else for about five years, until my current doctor decided to put me back on Actonel which I had been taking before Prolia. A recent bone density test ordered by her showed no fractures, and only degeneration of my cervical discs which Inhave had for some years now. She said I may have to consider Prolia if Actonel does not show prevention of any bone loss at my next bone scan. I have no intention of taking it, no matter what the scan shows. I have just been very careful about falls since I took that first (and thankfully last) dose of Prolia.

In your case the Reclast may be necessary to prevent the spontaneous fractures which could result from Prolia since you were in it for that many doses.

There is a Facebook page on Prolia and its side effects. I went into it briefly but found there was too much reading on it so I stopped following it. I got off Prolia early enough and so far … no fractures or broken bones! 🤞🏼

@rashida
Have you considered an anabolic like Tymlos or Forteo instead of Prolia, if the Actonel doesn’t work?
I was on Forteo after my fractures, unfortunately after 4 months my calcium level went dangerously high, and I had to come off. Tried Actonel after that and then finally Evista. Had to stop these was well due to reactions.
For whatever reason I have reactions to all osteoporosis drugs, I’ve talked to my endocrinologist about this and she has no explanation as to why.
Personally I think it’s because I have autoimmune issues. Since all osteoporosis drugs impact immune cells, I think this is the reason I’m so sensitive.
I just started hormone replacement therapy and am hopeful this will at least keep my bone loss at a minimum.

I was only on it for 6 months as well-terrible side effects - now on actonel once a week 35 mg. however I have some GERD issues and swallowing issue from actonel- going for a barium swallowing scan. I would like to take nothing- I have disc issues in my back and getting prolozone shots which work very well. Having new bone density scan done this week.

@bocabird I have GERD too. I take my Actonel tablet first thing when I wake up, then sit upright for about an hour before I eat something. I make sure not to bend forward or lie down.

I'm joining this lengthy discussion late, so please accept my apology for asking this question now - are current drugs used to treat osteoporosis and osteopenia dangerous? What are the side effects?

I just glanced and I'm seeing hair loss and nasty pain in the joints. Is this still true? Are the side effects from these drugs more damaging than the benefits of increasing bone density?

My thanks to all for helping me understand this a bit better. And I'm truly sorry for anyone who has suffered from or who is suffering from the side effects of these medications.

Joe