Osteoporosis meds: How do they work?

Smart choice to say no to Prolia, as I have posted many times, Prolia has and still I a nightmare for me! Horrible side effects and not sure my body will ever be the same! Severe pain in back muscles all over my body. Wish I had never taken Prolia, actual drug is denosumab , also being marketed as Xgeva for cancer patients! Hope this helps someone to avoid the suffering I hav and still am enduring from this poison!

I had my yearly checkup with my OBGYN in August 2018(which included a breast exam that came out normal) and she suggested I begin Prolia. I had my first injection about 4 weeks later. Then, about 4 weeks after the injection, I noticed a clear fluid leaking from my left breast (my injection was given in my left arm). I was referred for a diagnostic mammogram and sonogram. Findings were benign but I was then referred to a breast specialist. The specialist told me she could do a biopsy then or was comfortable allowing me to wait 6 months to decide about the biopsy. There is nothing about this particular side effect on the Prolia website but the Mayo Clinic website does list this as a possible but rare side effect. Just curious if any other people have had this problem.

Thank you to all for sharing your experiences with these drugs. We need to hear loudly and as often as possible from those who have used these drugs for osteoporosis. Too many times our doctors, and definitely our drug companies are not forthcoming about the terrible side effects and downside to taking these meds. Keep putting it out there what you have experienced, and I strongly encourage everyone to do your own research before deciding which drug to take or whether the risk with any of them is worth it in your particular situation.

Your question mentioned that some meds do not help you build bone. That used to be true-- until a few years ago, the meds, bisphosphonates and others, slowed the bone turnover. But newer ones that work like a hormone we have, PTH, have resulted in stronger bones. These types of meds have to be injected-- Forteo and Tymlos. Many people on this chatgroup have had bad experiences with meds, but people can have different reactions. I took Fosamax for 5 years without any bad effects. My bone density stabilized then even went up a bit. But when density started down again, my doctor (an endocrinologist) recommended Tymlos, because it has been shown to increase density in the spine. I wanted to build on what I have, not wait until I lose more. I walk on a treadmill for an hour every day and usually lift weights 2-3 times a week-- and have for 8 years, and try to get my calcium from diet, but with exercise and calcium and Vit D I still developed osteoporosis in my spine. I did not like the idea of self injecting but I tried it, and have been on Tymlos for over 6 months, with no side effects after the first week or so as I was getting used to it. Until I have a follow up bone scan, I will not know if it is increasing my density or not. But from this one person's experience, I can say that not everyone will have muscle pain etc. I understand people not wanting to use meds, but for me the natural process of bone loss in the spine is something I wanted to avoid if I could. People's bodies are different, and risks are different. Good luck with whatever decision you make. Exercise is certainly helpful.

I am on Reclast and HRT. Although I'm 61 and many will tell you that HRT is dangerous for women of my age, I know it can build bone and there are risks with ALL of the drugs. I took Forteo for 15 months but my bone density went from lunbar -2.9 to -3.0. So my doctor put me on Reclast and HRT since I won't get on Prolia until I'm 65 for Insurance reasons. So far, no side effects from either drugs.

Your information is greatly appreciated. Would it be possible for you or Colleen Young, to research and share the recent European Osterprosis study with 7,800 women? Evidently there are many women who have had adverse reactions to many Osteoprosis Rx. thank you.

@cheriann, you make a very valid point. While I am optimistic when my different physicians prescribe for me, I do like to check out the possible side effects. Doctors are great, but they are so used to the mind set that only prescribed medications can help us feel better. I recently discovered that some of my medicines were contraindicated. I then worked with my PCP to slowly wean myself off them. Some of my meds were recalled. Again, many thanks for all your comments!

Mamacita

@betterbones Congratulations Im glad it has helped you and you are right it all depends on the persons constitution You are one of a few Ive heard that it has helped My friend Im referring to was at first on Fosamex and after several years on it her jaw bone and teeth started to hurt so different people ,different strokes lol

@jaleen, Go to Facebook and join some of the Osteoporosis groups. You will see story after story of illnesses, broken and fractured bones, and people so angry they want to start a class action against some of these manufacturers.

@mamacita hello hope your having a good day ,everyone one should check the side effects on medicine Its a known fact the the Drug companies push the newest drug on Dr,s Dr,s follow suit and give it to all there patients but dont tell you the side effects and one size Doesnt fit all.Your pharmacist is the expert on medicine and its side effects as well as interaction with your meds so we all need to ask pharmasist when we get a new drug if this will interact with what we are on. All the perscribed meds I was on gave me terrible side effects so thats why I studied holistic approach to illnesses. Sorry didn't mean to get on my soap box but alot of drugs make us sicker not better.