How did you manage the pain side effects of Prolia?

Hi kay 71. Thank you for the post about Prolia. Since I can't decide which poison to take.I have had dental issues in past and had all my upper teeth removed and a permanent denture put in. Finally all is well there and I read about Prolia possibly causing side effects. I have a hyper thyroid which decelerated my bone loss. My left arm is changed by 12% from my Dexa from last year. I have no choice and scared. I may have to choose Tymlos. Anyone on this board used Tymlos? Also Kay71 why didn't they give you Tymlos?

@diva I have an appointment scheduled this week with the endocrinologist to discuss discontinuing Prolia (not having injection no. 4). Prolia has exacerbated the symptoms of my IBS-C to a point where I cant tolerate it anymore. Also with the third injection I experienced very unpleasant non-cardiac chest/muscle/bone discomfort (no sternum or rib fracture). Thankfully, this settled down after five weeks. Now I am faced with the dilemna of what next. Originally, my doctor wanted me on Forteo (do not think Tymlos is available yet in Canada). However, I read that Forteo sometimes causes palpitations and I have a ventricular arrythmia. Also, there is the 18month time limit and that black box warning about bone cancer (and there is so much cancer in my family). Bisphosphonates are contraindicated. And there is also the issue of the rebound fractures after stopping Prolia. There are really no good solutions! The prospect of fracturing is worrisome. Will see how it all pans out. There still isn't a great pharmaceutical solution for osteoporosis.

I am 69 years old and I have very bad osteoporosis - I was fracturing (hip and wrist). Sadly, all of the prescription bone building drugs have intense, nasty side effects. Every day on the support group on Facebook we get another new person with another set of horrible side effects. Many of the women in that group, which is called Osteoporosis Natural Remedies, are posting positive changes using nothing but supplements and better nutrition. I highly recommend anybody who is at a loss of what to do check that group out. Recently we had a nutritionist in the group who posted a lot of helpful advice about nutrients, minerals, and anti-nutrients. Actually, someone posts at least two or three helpful videos, books, medical articles, etc. every day. The nutritionist posted great information to help people know which supplements to pick. There is a search function on the group - so if you want to know about vitamin K2 (mk4 mk7) (which I think is very important), you can search to that and get all the information that has been posted about it. I was fracturing a lot before I decided to change my eating and add some supplements. Basically, I'm supplementing my calcium (can't seem to get enough by eating), magnesium, Vitamins D3 and K2 (mk4 mk7), and boron. Also helpful is a good Omega 3, Vitamin C, and a good multivitamin. A lot of people are also mixing collagen into their beverages and drinking that.

I am no longer fracturing.

Because my DEXA scan was so bad (-5.7), I am also using a very low dose estrogen patch and progesterone every other month. I do not have a high risk for breast cancer and my doctor and I felt that it was worth taking a chance to get my bones back. I have been using the estrogen for about a year - maybe less.

I was also walking a lot more. But then out of the blue I got anterolisthesis - and I can barely walk at all. I plan to get surgery for this later in the year. Basically it means my L5 has left the spinal column and is moving towards my hip. It is very painful to me. My neighbor is going through the same thing and he is also going to have surgery for it. It isn't related to the osteoporosis.

My fracturing has stopped! I plan to get a new DEXA scan in April.

I tried to have meaningful conversations with six endocrinologists. The only thing they were willing to talk to me about was bisphosphonates and similar drugs. They knew nothing about nutrition and were unwilling to talk to me about it; they only wanted to inject me with those drugs which have been proven not to work. After being on the Osteoporosis Natural Remedies group on Facebook - and talking to MANY women who had very bad side effects, I just could not take that poison. It was not for me. I decided to become as informed as I could be about what caused my osteoporosis and how I could reverse it. Women are posting their success stories on that support group on Facebook. If I had the money, I would consult a functional doctor or naturopath - or at the very least - a nutritionist. But I do not have a lot of money. So I am reading everything I can get my hands on and I am trying to be as informed as I can possibly be about nutrients.

You should talk to your doctor about this. It's a great idea to eat food that is good for you at any time in your life, but especially if you have osteoporosis. Food is medicine! I decided to try this path and see if I could improve my osteoporosis - and I just have to say - I am not fracturing now. DEXA scan results will be posted sometime around April.

BTW, the positive side effect of taking 3 mg of boron twice a day is that ALL of my osteoarthritis, rheumatoid arthritis, and fibromyalgia pain is GONE. I can make a fist with my hand - I can do needlework and play piano - just like I did decades ago! The upper limit for boron is 20 mg - so I am well under that.

I wish everybody good luck on this journey.

Could you tell me how to get to the Support Group on Facebook?

Good morning @finnj, Welcome to Connect. This community is about sharing memories, experiences, and information. We all want every member to be able to improve their quality of life.

What brings you to make your first post? Are you researching options for osteoporosis? Would you mind sharing your "need to know" with me?

You asked how to get to the Osteoporosis Natural Remedies group on Facebook, I think.

Do you have an account or page presence on Facebook? If not, is there a friend or family member with internet access? Once you are logged in, you will see that on the left side of the page there is a search block after the words ON FACEBOOK. Just enter Osteoporosis Natural Remedies. The link is below.

Here is a link to the group page and one of the secondary posts for that Facebook group. It is a closed group and you will need to join to have access. That isn't difficult either. Directions should be right there.

https://www.facebook.com/groups/381491778677183/
https://www.facebook.com/photo.php?fbid=10154967050756017&set=gm.959963967496625&type=1&theater

If this does not work....don't go away "puzzled". Come back and we'll figure it out.
Be safe and protected today. Chris

When you are on Facebook, use the search box and type in Osteoporosis Natural Remedies - and it should take you to the Timeline. You will be asked to answer a few questions (they like to root out the bots) and you will be approved and can join the group. I would post the website, but we are not allowed to post them here.

https://www.facebook.com/groups/381491778677183/
I don't think I'm allowed to post web addresses here - but we can try

Hi,

Do NOT start this drug. It is terrible. First of all, this is a drug with chemotherapy chemicals and is used to treat bone cancer. I have had terrible pain in the leg bones, have lost 1/4 of my hair, and the joints in my fingers have all swelled permanently. I wish that I had never heard of this drug. I had 2 shots and will never take another one - the thing is that all the osteoporosis drugs have similar chemical make-ups. Before you start any drug be sure YOU do lots of research. Do not believe the doctor - mine told me that there were no side effects which is not true. My doctor (chair of the endocrinology department) now agrees that I will only do calcium and Vitamin D (ergocalciferol) and exercise. My T-score is -4.7 but this drug is too bad for me to ever take again! K

Attached is my osteoporosis spreadsheet. Make one for yourself. This spreadsheet is from 1999. I am now 70. The T-score that they all use is based on a 32 year old's bone density. The Z score is based on your age. Hmmm. We all know that as you age from 30 on, we lose some bone. Some of us lose more bone at a faster rate as we all know. But look at how long it took you to get where you are right now. Before you take this drug or any injectable drug, get online and research it. Go to the Amgen website and review the tables there. This quote is taken from their medication guide. "• Increased risk of broken bones, including broken bones in the spine, after stopping Prolia. After your treatment with Prolia is stopped, your risk for breaking bones, including bones in your spine, is increased. Your risk for having more than 1 broken bone in your spine is increased if you have already had a broken bone in your spine. Do not stop taking Prolia without first talking with your doctor. If your Prolia treatment is stopped, talk to your doctor about other medicine that you
can take." So when you have to stop taking it at the 3 year level, what happens? Another drug? My endocrinologist agreed to prescribe physical therapy for resistance training. I have been doing that for almost 2 years. I have been doing strength training for 3 years. In the past 4 months I have enrolled in a balance class with other adults. I go to each one every week. My balance class costs me $30 a MONTH and it is ran by a physical therapist. We all get individualized help because we are not all at the same level of fitness. My physical therapist for resistance training is paid for by insurance. My strength training is done by a physical therapist and I do pay for that myself but it's worth it. If you aren't familiar with any good physical therapists, contact a good orthopedic clinic. They can recommend a great one. That's where mine came from. I get my next bone density this summer.

Hey Diva. Do some research about these drugs. The way they work is by not allowing the old, dead bone to exit the body. Usually it is excreted in the urine. But these drugs keep the dead bone in place until you quit taking it. It makes it appear as though you have new bone - stronger bone - when in fact, it is dead bone. That is why people start fracturing when they stop taking the meds.