Prolia treatment for osteoporosis

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

@contentandwell Have you researched Boron it is a mineral for bones along with Calcium.magnesium VitbD3 VitK of course your health team it has amazed me

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@lioness

@contentandwell Have you researched Boron it is a mineral for bones along with Calcium.magnesium VitbD3 VitK of course your health team it has amazed me

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@lioness. I think if my endocrinologist thought it would help she would have mentioned it, she knows I am very ambivalent about the drugs. I will mention it to her though. Thanks.
I just googled and we need very little boron, and many foods that I consume contain it so I suspect I don’t need to supplement it.
JK

Liked by lioness

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@kay71

When you are that one out of 10,000 then it’s too serious to take a chance on. I’ve been extremely sick ever since my last Prolia shot and will never take another. Just go google ONJ and see if you want to take a chance on that. I was also told the chances of that happening to me were slim to none! It’s the worse I have ever experienced and I’m not well yet! May never get well! Not worth it!

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I understand you won the “this stinks” lottery. I cannot blame you for how you feel. I won a couple of the cancer lotteries, so I really do understand. I still try and look at new things objectively and not color everything with that brush. I wish you a timely recovery.

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I had one injection of Prolia and the results were TERRIBLE. Prolia hijacks your immune system to build bone; they don't tell you that ahead of time. So, I had an ear infection for 3 months. The ENT doctor told me about the hijacking and said to NEVER get this shot again. If you are susceptible to infections, like getting colds easily or having every little cut become infected, DON'T get it. It's in your system for 6 months or more, and there is no antidote. You just have to wait it out and suffer the whole time.

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@contentandwell

@auntieoakley @cireland I don't know my endocrinologist well, I have just had one appointment with her, but my PCP also suggested Reclast and commented that he had recommended it for his own mother. Also, we have a very close friend who is a doctor, recently retired, and he too thought that Reclast was the best option for his wife, and he is not a big drug prescriber at all.
JK

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After the Prolia disaster I took the RECLAST infusion, only 1/2 dose since it is in your system for 6 months and longer. I have digestive issues (lactose intolerance, fructose malabsorption, etc.) and the doctor said it wouldn't affect my stomach like the bisphosphonates pills. Wrong! I had HORRIBLE side effects, not just gastrointestinal issues but dozens of others. This is the worst medicine I've ever had and I think it should be removed from the market. Either that or they should learn how to tell if someone shouldn't take it ahead of time, since there is no antidote. You can find a list of the side effects on the Mayo Clinic site – look under drugs, and type in zoledronic acid. The list is 3 or more pages long! Besides trashing my G.I. tract (I had had it all under control before this), it screwed up a bunch of other body systems. I couldn't even plug a cord into an outlet without getting out of breath. The first time I couldn't get my breath back for 2 days so finally went to the ER. They found nothing so I know it was that (plus it happened multiple times after that). I bought a can of aviators oxygen from the Harriet Carter catalog and have used that multiple times to get my breath back. My bone density only increased 3% for all I had to go through. I got the infusion in April 2019 and am still not back to normal. Have you tried Forteo? That is a drug you inject into yourself daily. That has the advantage of bypassing the GI tract plus you can quit anytime if you need to. Anyway, never again for the 6 month drugs. My next plan is to try an oral bisphosphonate you take weekly or monthly. Good luck with whatever decision you make!

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@Good Afternoon @lelia, Thank you for sharing your experience with treatment options for osteoporosis. We are all helped by your knowledge and can trust your personal evaluation. We also know that everyone is different and some have had positive results.

I note that you are thinking about a monthly oral bisphosphonate. My experience was not good and waiting a month to get over the bone pain in jaws, eye sockets, rib cage, was somewhat torturous. It was decided that none of the bisphosphonates would work for me.

I chose Tymlos, a daily injection so I can see how it goes day to day. It actually goes very well. No side effects. No refrigeration. The product is stable at room temperature.

Good luck with your advocacy for better medications. Let us know of your decision and progress. Chris

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@artscaping

@Good Afternoon @lelia, Thank you for sharing your experience with treatment options for osteoporosis. We are all helped by your knowledge and can trust your personal evaluation. We also know that everyone is different and some have had positive results.

I note that you are thinking about a monthly oral bisphosphonate. My experience was not good and waiting a month to get over the bone pain in jaws, eye sockets, rib cage, was somewhat torturous. It was decided that none of the bisphosphonates would work for me.

I chose Tymlos, a daily injection so I can see how it goes day to day. It actually goes very well. No side effects. No refrigeration. The product is stable at room temperature.

Good luck with your advocacy for better medications. Let us know of your decision and progress. Chris

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Thanks for your suggestion.

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@lelia

After the Prolia disaster I took the RECLAST infusion, only 1/2 dose since it is in your system for 6 months and longer. I have digestive issues (lactose intolerance, fructose malabsorption, etc.) and the doctor said it wouldn't affect my stomach like the bisphosphonates pills. Wrong! I had HORRIBLE side effects, not just gastrointestinal issues but dozens of others. This is the worst medicine I've ever had and I think it should be removed from the market. Either that or they should learn how to tell if someone shouldn't take it ahead of time, since there is no antidote. You can find a list of the side effects on the Mayo Clinic site – look under drugs, and type in zoledronic acid. The list is 3 or more pages long! Besides trashing my G.I. tract (I had had it all under control before this), it screwed up a bunch of other body systems. I couldn't even plug a cord into an outlet without getting out of breath. The first time I couldn't get my breath back for 2 days so finally went to the ER. They found nothing so I know it was that (plus it happened multiple times after that). I bought a can of aviators oxygen from the Harriet Carter catalog and have used that multiple times to get my breath back. My bone density only increased 3% for all I had to go through. I got the infusion in April 2019 and am still not back to normal. Have you tried Forteo? That is a drug you inject into yourself daily. That has the advantage of bypassing the GI tract plus you can quit anytime if you need to. Anyway, never again for the 6 month drugs. My next plan is to try an oral bisphosphonate you take weekly or monthly. Good luck with whatever decision you make!

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If you want to read reactions to Reclast from lots of people, go to Drugs.com. It's not just me.

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@artscaping

@Good Afternoon @lelia, Thank you for sharing your experience with treatment options for osteoporosis. We are all helped by your knowledge and can trust your personal evaluation. We also know that everyone is different and some have had positive results.

I note that you are thinking about a monthly oral bisphosphonate. My experience was not good and waiting a month to get over the bone pain in jaws, eye sockets, rib cage, was somewhat torturous. It was decided that none of the bisphosphonates would work for me.

I chose Tymlos, a daily injection so I can see how it goes day to day. It actually goes very well. No side effects. No refrigeration. The product is stable at room temperature.

Good luck with your advocacy for better medications. Let us know of your decision and progress. Chris

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Happy the Tymlos is working for you. I had stomach pains that were very painful for 2 weeks after first shot. I'm about to start Prolia in 2 weeks. Hoping not to have any side effects. Thank you for posting.

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I've taken 2 Prolia injections over the past year & now have a Rheumatologist. In N Dakota they are few & far between to find an Endocrinologist so my PCP sent me to Minot 3 hrs away to the Rheu. This Rheumatologist is adamant about me going on Reclast eventually but after reading what others have gone thru having that infusion, I'm pretty sure I won't take him up on that. He is from India in case that has any bearing on his choice between Prolia & Reclast…..he talks about the cost of Prolia being out of sight & says its only once a year for Reclast. I dont care about the cost as my 2 insurances take care of it….last Prolia injection 4 mos ago was $6,202…..insurance pd. How crazy is that for HIGH cost of a med. I'm 118 lbs & do worry about bone loss. Haven't had a 2nd Dexa Scan since my 1st Prolia one yr ago. Need to do that to see if Prolia is helping bone density. So will do that prior to April when I need to choose P or Reclast.

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@contentandwell

@auntieoakley @cireland I don't know my endocrinologist well, I have just had one appointment with her, but my PCP also suggested Reclast and commented that he had recommended it for his own mother. Also, we have a very close friend who is a doctor, recently retired, and he too thought that Reclast was the best option for his wife, and he is not a big drug prescriber at all.
JK

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From my research, Reclast has the most severe reactions. It's an annual injection. I just read more about it and apparently the negative side affects are more prevalent in women over 65. I would look into Tymlos which is a daily shot — very easy to self-administer. I had some side affects at first, but they did not last and I just had my bone scan and my T scores for my spine are all within the normal range.

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@auntieoakley

What you ask for is readily available on the drug manufacturer websites. The thing to understand is a large percentage of drug research these days is actually done by independent researchers and universities. Many double blind studies are done at multiple institutions by many different people. After the study has completed and it looks as if there will be a benefit to the people who need it, and therefore a market to which the drug companies can sell the product, this information is usually purchased from researchers who then use it to prove the point on their own websites or to develop the new drug depending on the research in question. The place to look for much of this information is on websites that are designed to educate you about spine health or bone health, advocacy groups, or the funding institutions like the NIH. In this way you can get the information without the manufacturers bent. I would also like to say, that not all doctors just want to give you more medicine to get paid more. I have a doctor that I trust without question who performs clinical trials, and more importantly cares about his patients. I hope you can find a doctor that deserves your trust in this way. Mayo Clinic and or Mayo trained doctors are a great place to start.

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You're more trusting than I am. I would not automatically trust any inforamtion found on a Pharma site; they have one goad — to make money. We need a Consumer Reports for medications.

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Agree with you…..100%.

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@susan30

I've taken 2 Prolia injections over the past year & now have a Rheumatologist. In N Dakota they are few & far between to find an Endocrinologist so my PCP sent me to Minot 3 hrs away to the Rheu. This Rheumatologist is adamant about me going on Reclast eventually but after reading what others have gone thru having that infusion, I'm pretty sure I won't take him up on that. He is from India in case that has any bearing on his choice between Prolia & Reclast…..he talks about the cost of Prolia being out of sight & says its only once a year for Reclast. I dont care about the cost as my 2 insurances take care of it….last Prolia injection 4 mos ago was $6,202…..insurance pd. How crazy is that for HIGH cost of a med. I'm 118 lbs & do worry about bone loss. Haven't had a 2nd Dexa Scan since my 1st Prolia one yr ago. Need to do that to see if Prolia is helping bone density. So will do that prior to April when I need to choose P or Reclast.

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I just did a binge reading of most of the posts here and recall you bought or tried the Algecal supplements and wondered how you did on those and if you have had a DEXA scan after you started? Was there any results? Was interested in possibly buying into it but not sure. Thank you

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Hi,

The side effects are terrible! You are putting the same chemotherapy chemicals into your body as are used to treat bone cancer. I have terribly painful legs that are almost unbearable when lying down, general aches and I lost about 1/3 of my hair. I have not experienced the jaw or teeth problems reported but am stopping this before I do! I had 2 shots and the dr. said there would be no side effects! How do I quit without getting the rebound broken bones? I don't know but do not start. By the way, all of the osteoporosis drugs have the same chemicals in varying amounts. I am sticking to calcium and ergocalciferol after this. Best of luck, K

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