Mayo Clinic Connect
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
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@sue225 Thanks for the info you have posted about being on prolia. This is such a difficult and confusing situation when you need to be on a drug for osteoporosis. I do plan to take the drug route but am still deciding which drug. I may be limited due to being on immunosuppressants. For instance, if as @lelia has commented prolia "hijacks your immune system" that would probably be off limits for me. I need to do more research and speak further to my endocrinologist.
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@contentandwell you'll see when you read up on Prolia (Amgen's own site)that it there is a higher incidence ofyou infections (ear, sinus, bladder). Prolia does affect the immune system. Hopefully, your doctor will take everything into consideration and prescribe what is best for you.
Liked by JK, alumni mentor
Assume the pharmaceutical companies would make it an uphill battle – or impossible – to sue, but one could inquire.
@butch25350 I wasnt really thinking about sueing (although one wonders down the road with all these fractures if someone won't). I just think the patient needs a clear understanding from the outset about potential outcomes. I didnt have that many choices. I picked the one that scared me least:)
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A lawsuit gets attention and, unfortunately, may be the only way to change a particular injustice. Very few people enjoy suing, but some patients on this site were not given a clear understanding of potential outcomes by their own doctors. They might benefit from a consultation with a medical malpractice attorney.
(I am not a lawyer or victim of malpractice re: osteo meds, but if my doctor had not warned me…, I would, at least, contact the doctor and his/her state medical association to prevent the same thing from happening to others.)
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Do NOT start this drug. It has been the worst experience. The side effects are terrible! I have lost 1/4 of my hair, my legs ache all the time, and before this drug I was in the top 5% healthiest people in this country. Not anymore thanks to it. Remember, this drug is the same one they use to treat bone cancer and therefore contains the same chemotherapy chemicals. I had a special consultation with the endocrinologist and will return to my calcium and ergocalciferol (Vitamin D). Do your own research and remember that all of the osteoporosis drugs contain some chemo chemicals. Also, exercise and keep active. I wish I had never heard of any osteoporosis drugs. Good luck, K
@sewcouture Which drug are you referring to?
If you want to direct a response to a particular posting then you can click on the reply under it and it will show the post it is a response to. If you use the @ with the person's Connect name as I did at the beginning of this message it will let that person know that you have responded to them.
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@sue225 She has suggested Reclast as did an endocrinologist I see for my diabetes and hypothyroidism. I just hate the thought of something that could negatively affect me for a year.
@contentandwell yes, as I mentioned in one of my posts, that's what my endocrinologist has recommended I take if I decide to discontinue Prolia. I know, I am also leery of a drug that stays in your system for possibly longer than 12mos. Out of the frying pan and into the fire. If it's any consolation, my endocrinologist put her over 80 year old mother-in-law on Reclast. The only thing she has experienced is achiness and her daughter-in-law, the endocrinologist advised her to take Tylenol.
Thanks, @sue225 My PCP mentioned that his mother is on it and doing well too. I am sure she must be older than I am since he is in his late 50s and I am in my early 70s.
Doctors all seem to love Reclast. A friend is on it too and her husband is an ob/gyn. These are all sort of scary, that's for sure.
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@contentandwell Reclast is the "flavor de jour".
All the drugs hijack your immune system. Plus, once you start down the drug path, they will definitely keep you on it, or else you'll lose any ground you may gain….only now your bones will be more brittle than before you started. Our bones regenerate every 10 years….so I'd encourage you to research natural ways of building bone density….diet, hydration, exercise, supplementation. We can help our bodies do what they are intended to do and do it without drugs! There's a great Facebook group, Osteoporosis Natural Remedies….a wonderful support group that will encourage you in your natural protocol journey. I'm personally doing OsteoStrong, taking a high quality supplement line, eating super healthy for bone health, and in less than 3 months already am seeing positive results.
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@migizii thankyou for letting me know about your Reclast experience. I still have 5-6 months before making the big decision. Although I'd like to just throw caution to the wind and say no to meds, there is a voice inside me saying, unwise. Prolia is such an easy treatment and it has definitely worked for me in terms of bone density improvement. If only the side effects would disappear.
Can I ask: did you fracture while on another osteoporosis medication (Prolia, or one of the other meds?)
I fractured my foot while on Prolia. However, it may have happened regardless of whatever type of medication I would have been using as I fell down some stairs at work. It caused three small stress fractures, but it took a very long time to heal (8 months).
@migizii yes that is a long healing time. Glad its behind you.
All the drugs do not hijack your immune system. I am susceptible to infections, and while I got an ear infection for 3 months on Prolia, I got no infections on Reclast. FYI.
@lelia good to point that out.
Liked by Chris Trout, Volunteer Mentor
Yes they do!!!! My dad Essentially passed away because a nurse in the hospital let him choke on a pill that was supposed to be cut and crashed.
I asked what pill he was giving my dad, he told me, and I said the pill needs to be crushed and cut. He said I have it in apple sauce it’ll be OK and put it in my dad’s mouth. I was standing there trying to make him breath and the nurse walked out the door he said there’s no reason that he shouldn’t be able to breathe. He coded, they revived him and he was mentally gone when he came back. He was in the in hospital rehab after having a heart cath and a couple other things. He was on the road to coming home to living independently.My brother sought an attorney….
They said it is extremely hard to sue a hospital, with all the doctors, nurses, Pulmonary therapist, physical therapist, occupational therapist, radiologist… Get the drift? They said that no one would take the case because it would be so expensive to prosecute and since my mother had pre-deceased my dad (ironically my mother was a nurse and she passed away due to a blood clot after knee replacement surgery) that the most that the children could get would be a combined $150,000. And no one will take a suit that potentially costs over $1 million to prosecute . We were also told that if my mother had been alive, when this occurred to my dad, that things would’ve been totally different and an offer would’ve probably been made to her. The trauma I went through watching my dad die in front of me no amount of money could’ve helped. But, it would’ve been something. I never pursued it. This just happened in January 2019. So, I believe that hospitals ,doctors and pharmaceutical companies pretty much have the court system in hand. Unless it’s such Clear-cut case of medical malpractice with multiple witnesses and on and on.
In addition to the two femur breaks (The first break was on a girlfriend vacation, going into a restaurant which had a broken sidewalk). I also cracked my pelvis and hip during that same accident.I had to have the original rod replaced because it was the wrong one after I walked in pain for 51 weeks ….with the brake still there. The rod was too small so It created a non-union. I had the new rod and screws on August 28, 2019. It was the discovered when I was nearly finished physical therapy that I had a stress fracture on the other leg…So, another Surgery for a rod was completed on November 13, 2019.I finished physical
Therapy for rods number two and three last Thursday. I was in PT from 9-6-19 through Feb. 2020. The original fall was the first time I had fallen as an adult and don’t recall ever falling after the age of 10, I am now 65. Another suspicious incident occurred in August, 2018 when I fractured my fourth and fifth metatarsals. I was in a boot for three months. Went back to the doctor and told her it still hurt. She said that’s really impossible it should not hurt after this period of time. But, she humored me and took an x-ray. My Fourth metatarsal was healed, my fifth metatarsal was completely broken. I was on immediate no weight-bearing, had surgery and continued on the no weight bearing for a total of three months. So, I’m about done. Having to make this decision about what to do next for the osteopenia is just almost too much for me. I’m really glad I found this site because I know there are others out there that have had the same situation or worse than I do. I may always walk with a limp and I continue to have pain in the original leg that was broken… But, the break was very very extensive and damaged muscles tendons and lots of soft tissue. On top of that I had the second surgery.I truly hope someday that I get back to being a 3 to 5 miles a day walker… But it’s getting less hopeful daily. I do lots of exercises and everything that I have been asked and told to do and I still struggle.
Liked by Chris Trout, Volunteer Mentor, migizii
I have received one injection of Prolia and I am struggling with constipation to the point where I am not willing to continue with the Prolia. My doctor dismisses constipation and back pain as non side effects of Prolia. I have had long standing constipation uses d/t taking an antidepressant, hypothyroidism, statin drugs. I have seen a gastroenterologist with suggestions for fiber. Fiber makes it worse. I am taking miralax. Has anyone else suffered from this?
@harper2018 just reading your 2year old post and cant remember if I asked you before. What did you do about treating your osteoporosis? I've had 3 prolia injections and as I've mentioned on this site too many times, my most unpleasant side effect is severe constipation, (always had this problem but nothing like this). I have since the Prolia become laxative dependent. 4th injection coming up in July or Reclast. What did you end up doing?
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