Want to stop Prolia

[VieuxQuebec]

I have been on Prolia for 3 years and want to stop. Rheumatologist only says « you should stay on it » blah blah blah. I know that there’s risks of spontaneous fracture but the side effects and long term effects of Prolia are frightening. Anyone know of any natural remedies ( I am in my 60s). I take raw calcium, vit d3, magnesium. I also take long walks and, up until a recent wrist fracture, did kettlebells. I find that the medical establishment ( which I was professionally a part of) is narrow minded and pro big Pharm.

[Met00]

Sadly it's essential that you take another osteoporosis medication (usually a bisphosphonate) to reduce the risk of rebound fractures when stopping Prolia. I'm not aware of any natural remedies that would have the same effect.

[VieuxQuebec in reply to Met00]

Thanks, I understand. My rheumatologist is flippantly saying I should stay on Prolia so if she is not willing to prescribe something orally I will look for a new doctor.

[Vaslim in reply to VieuxQuebec]

I grew, find another doctor, preferably a endocrinologist. I’ve heard really good reports on Reclast, a once a year infusion. Do your research and be careful of focusing on all the negatives. I’m 78 and was diagnosed with a fragility fracture on right side of my sacrum. I just don’t want anymore and I’m willing to deal with taking Tymlos. I’ve decided to not follow up with Prolia, but instead Reclast.

[VieuxQuebec in reply to Vaslim]

I have heard and read good things about Reclast. I am going to speak to my doctor about it. I can’t blame her, she’s part of the allopathic medical establishment and is knowledgeable .I also take vit d3, taw calcium with strontium, k2, vit c, etc.

Thanks for your reply, glad you are doing well with Reclast.

Carol

[FearFracture in reply to VieuxQuebec]

Have you asked about alendronate instead of reclast (zoledronic acid). They are both biphosphonates but alendronate is a pill that you take once a week. If you have digestive issues you might not be able to take alendronate but the potential side effects from the pill are better than the potential side effects from the infusion.

[VieuxQuebec in reply to FearFracture]

I decided to continue with the Prolia after all for now. I went to a new rheumatologist. I am thinking of going to a functional medicine doctor , will explore…

[Bet117 in reply to Vaslim]

Hi Vaslim, I am so sorry that you have had such grief with your rheumatologist.

I agree that it may be time to seek a second opinion. If a doctor is not listening to you, answering questions and communicating openly with both you and the other members of your medical team; particularly your PCP, then perhaps it is time for a change. I was forced to discharge my endocrinologist of 14 years at a metro- teaching hospital, so I understand.

When my bone density showed a decline two years ago, my osteo- endocrinologist pushed; not suggested, Romosozumab for a year followed by Re-Clast for 3 following. My other option was Re-Clast.

Romosozumab was fairly new at the time and had a black box warning about administration to persons with a family history of stroke or cardiac issues which I have and especially a drug which he admitted his staff was not yet trained in administering.

I also told him that I wanted a consult with both my PCP and nephrologist before taking any medication and also did my homework.

I sought other opinions; a rheumatologist, who gave me two options; Prolia or Re-Clast and refused to consult with my nephrologist who was out of his practice group.

I was not comfortable with the side effects of Prolia and after speaking to my nephrologist,

decided to take the Re-Clast again with monitoring.

I then had a long talk with

my osteo-endocrinologist; reviewing my medical history with him again and he listened; had he not, he would have had to be discharged.

He ordered the slow drip infusion which is also safer for kidney patients.

Unfortunately, we as patients have to become our own advocates.

Ask questions, speak your mind and remember that you are paying for a physician's services.

Please let me know your outcome. I care.

Bet

[BikerGdma]

My doctor had me add 300mg of strontium twice a day. Be sure to take it away from any calcium-containing supplements.I rolled the dice and quit Prolia after a year and a half. Decided I was done with needles and drugs in general. I have my DXA scan this month so I'll see where I end up.

I also have a 8lb hand weight and use it when I do 10 squats every morning ... keep those leg and butt muscles strong! 🤣🤣🤣

[VieuxQuebec in reply to BikerGdma]

Thanks for your reply. When you quit Prolia did you start taking another drug (Fosomax, etc)? If I read your email correctly I think you did not. I do kettlebell exercise , walk an hour in the park each day aside from general walking for errands, this includes walking ip and down stairs. I have an appointment with rheumatologist next week for Prolia injection which I am going to cancel. I was hesitant about canceling due to the fear of the risks of suddenly stopping the drug but I just feel uncomfortable continuing with it.

[BikerGdma in reply to VieuxQuebec]

I did not start another drug. My mom took Fosemax for years -- still developed osteoporosis. My chiro's mom took Prolia for 10 years -- still developed osteoporosis. Big Pharma only makes money off of sick people ... and that's why I decided their poisons are not for me. I feel much better without their side effects too.

[VieuxQuebec in reply to BikerGdma]

There needs to be better options for treatment !

[pansies7]

HI! I too have been struggling with the dilemma of Osteoporosis and the medications used to counter it. There does not seem to be a "cure" for bone loss, especially post menopause. The medications are not a cure either, they are a stop-gap measure with certain risks associated with taking them (as is the case with many medications), and must be taken for the rest of your life! I am still weighing whether or not to begin the meds, my concern is that if I need to stop taking them down the road due to undesirable side effects, that my bones could be in even more danger of fractures due to the rapid loss of bone mineral density that happens quite quickly once the medications are no longer taken. The area I live in has no Bone Specialists! Even the Rheumatologists here do not treat Osteoporosis. I would personally prefer to see an Endocrinologist for bone health. I have found a Bone Clinic which is run by the Spine Clinic (Orthopedic docs) at a local hospital, and have an appointment scheduled. I am looking forward to having an educated and in depth conversation about the medications as it can be challenging to gleen accurate info from the internet, and the Spine Doc assured me I can ask all of my questions at this appointment. I have been taking calcium, magnesium, D3, K2, Boron, B12, Folate, fish oil, MNM and CoQ10, and I have upped my protein which is also very important for bone health as protein is the framework of bone. I do not see protein mentioned very often when supplements, diet, and exercise are mentioned. I exercise daily. I know it can be challenging to buck the recommendations of the docs, but ultimately it is your body, your responsibility, and your choice to make. I have decided not to allow myself to be pushed into taking something based on fear, I want my choices to be well informed, and educated. Also, if you have needed regular dental work over the years, you might find talking to your dentist about bisphosphonates to be helpful and important information. Education = Empowerment, education takes time...I keep reminding myself to breath, relax, stay focused and trust my process.

[VieuxQuebec in reply to pansies7]

I hear you! The cost of Prolia is also an issue; ridiculously expensive and not approved for self administration as is insulin and Forteo and other medications.Everything has risks/ benefits and you are correct in that we all have to educate ourselves and decide what risks are worth taking.

[noRx4me in reply to pansies7]

I agree with your outlook 100%. Education about osteoporosis takes time but the feeling you get from that knowledge is second to none. I saw a Rheumatologist after I got a dexa scan. He tried to bully me into taking meds, actually was quite rude when I tried talking to him about the meds. I adamantly refused to take anything and won’t be going back to him. All I can say to anyone is research, research, research. And the more you research the more answers you will find. No one knows your body like you do.

My bmd is -3.9 L1-L4 and hip is -3.2. I’ve never fractured but know others who started meds and fractured afterwards. I’m not willing to take a medication, it’s like Russian roulette, you may or may not get side effects.

I’m doing supplements and weight bearing exercise. Loss of bone density is a normal part of aging. We can’t really stop it but we can slow it down and strengthen our muscles so we’ll have better balance and lower the risk of falling.

[Cashewchocolate in reply to noRx4me]

Hi, I have been in the same boat for the past 10 years. Just turned 60 and my Spine is -4.3 and hip is -2.8. I exercise 6 days a week about 30 -60 minutes a day, strength training, cardio, swimming and walking. My mom had osteoporosis and so does my older siter.

All doctors are heavily advising me to go on medication. I went 4 years ago to a specialty bone doctor and she wanted me to go on Forteo. I am not on any other medications. I am at a point where I know I will need to take something, but have the same concerns as you. There really seems to be very little progress in this area of science.

[Mark_ABH]

Hi VieuxQuebec, I am guessing your doctor wants to be aggressive about treating your osteoporosis because you already have had a wrist fracture, which is a red flag that you will continue to break bones. Your risk increases geometrically with each bone you break. This is separate from the risk of "rebound osteoporosis" from stopping Prolia. It's up to you, of course, but your doctor is not holding out on any "natural" remedies that will cure your osteoporosis and keep you from breaking more bones. Good luck!

[VieuxQuebec in reply to Mark_ABH]

Thanks for your reply. Yes, I am aware of the increased risk for fracture after a fracture has already occurred. My new insurance does not cover the Prolia as much as my prior insurance; the copayment is now $300 , plus the $75 for the MD visit since it is not approved to be self administered at home ( why?!).I live in the US where health insurance is unfortunately not wonderful.

I am seeing my rheumatologist next week and we will discuss alternative drug.

[Mark_ABH in reply to VieuxQuebec]

The U.S. is apparently the only country where you can't inject your own Prolia. This got to be an issue during the early months of the pandemic when doctors' offices were closed or severely restricted.

[VieuxQuebec in reply to Mark_ABH]

It’s ridiculous. There is no reason it cannot be self injected at home.

[FearFracture in reply to Mark_ABH]

While doing my own osteoporosis research, I have learned a good deal about the parathyroid glands. My question is should I get my PTH levels check. I've looked back through several past blood tests and my calcium levels always seem to be within the normal range, but everything I read about osteoporosis says stuff like, as long as you have ruled out other possible conditions, and I really just want to make sure I have ruled them all out. I was diagnosed with osteoporosis at 50, lumbar t-score -3.9, had my 2nd DEXA scan in July 2021 and my lumbar t-score is now -3.7, but I want to verify that my only issue is osteoporosis and not some other underlying condition that my doctor is not thinking to checking.

Note, I know my vitamin D levels were low and I have already been doing all I can to improve that, and I have been tested for Celiacs and I don't have it but I I do have NCGS (non- celiac gluten sensitivity). Also, I have Hashimoto's thyrioditis and I take 75 mcg of levothyroxine daily.

Thank you.

[Mark_ABH in reply to FearFracture]

Here is a rundown of conditions that might cause bone loss, along with the tests your health care provider might order to diagnose them. americanbonehealth.org/bone...

PTH issues can certainly cause bone loss. You might ask your health care provider about that. Your T-scores do seem very low for age 50 ...

[FearFracture in reply to Mark_ABH]

I'm small. I'm 4'11" (note, that is my maximum height, I have no height loss) and at the time of my 1st DEXA scan I weighed around 100 lbs. A few ppl on this website have mentioned that my scans may be skewed because of my petite size.

Dr. Lani Simpson (lanisimpson.com/) and Dr. Brown (betterbones.com) also seem to think that DEXA results for smaller people can be inaccurate.

Someone on HealthUnlocked mentioned that when she used Dr. Ott's BMAD calculator that her t-scores improved by 1 full standard deviation, which is HUGE.

With a little searching, I was able to find Dr. Ott's BMAD calculator: courses.washington.edu/bone...

Unfortunately, the facility that did my DEXA scans only gave me the summary pages, which I didn't learn until recently, and I am having a hard time getting the complete reports, so I have not been able to enter my info to see if BMAD would show higher t-scores than the DEXA scans indicated.

My question is do you think this is true? Meaning, do you think that DEXA scans for small people underreport actual BMD?

[Mark_ABH in reply to FearFracture]

Hi FearFracture, yes, petite or "small-boned" people have low T-scores because bone density testing uses a 2-dimensional image to estimate the 3-dimensional volume of your bones. It doesn't necessarily mean you are at high risk of breaking a bone. Remember that your T-scores reflect only part of your fracture risk. There are a lot of other factors to consider.

[Traque]

When you stop Prolia or one of the meds in the anabolic (bone building) group of meds you must go on another anti-resoptive med such as a bisphosphanate. All the current research show a rebound bone loss within 6-9 months of stopping and a significant increase in the risk of vertebral fractures. You need to find a doctor who specializes in osteoporosis treatment to help advise through this transition.

[VieuxQuebec]

Thanks for your input.

[FearFracture]

I don't know enough about Prolia to answer but I would advise you to look up prunes and osteoporosis. I've recently added 5 prunes a day to my daily diet and might increase it to 10. I've only recently added them to my diet so it hasn't been long enough to know what the end results will be but I am willing to try any natural remedy that might work.

[HeronNS]

Had you already been on Prolia for three years before the wrist fracture? How did the fracture occur?