Mayo Clinic Connect
I had prolia injection a week ago. I've developed lower back pain and severe spasms. The spasms are so bad I can hardly get out of bed or even out of a chair. Is there anything I can do or take to alleviate this awful pain.
Liked by Dee, JK, alumni mentor, Chris Trout, Volunteer Mentor, Merry, Volunteer Mentor ... see all
Hi, I had a positive experience with Prolia. I’ve been battling osteoporosis and osteopenia throughout my 50s. I’m currently 58 and recently broke my pelvis and several ribs. Apparently, no one wants to put me back on any medication.
I was on Prolia shots for 2 years and they worked well for me without apparent side affects. I returned bone density levels high enough to stop getting injections.
I understand that some folks have negative side affects. I expected to have them with my bad dental genetics and history but fortunately did not. After discussing the options available at that time, insurance coverage, and my medical history, we settled on Prolia injections. Eventually I realized andit was confirmed by the staff that I was the only woman receiving them in their very large practice.
The drug company rep and BCBSTX were all very helpful when I had to order the shot every 6 months myself, and have it sent to the doctor’s office.
My health has since deteriorated, so I would have to have the discussion again with my gynecologist about what medicine is the best approach. I’ll be giving her a call to let her know about my recent bone breakage to keep her in the loop.
Liked by JK, alumni mentor
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@gldnrtrvrlvr hi just want to ask a question. If Prolia is discontinued, it must be replaced with another osteoporosis medication. All the gains in bone density are rapidly lost and fractures may occur. Did you fracture before taking Prolia? While on Prolia? Or at some point after discontinuing Prolia?
I am surprised that you were advised to stop taking Prolia. Here you are told to make sure you get your next injection within the 6months (give or take a week or two) "for your own protection". Translation: we dont want you to fracture.
Liked by parrotqueen
I have a DEXA scan score of -5.7, but I REFUSE to take any of these drugs. I talked to a bunch of women who had very negative side effects to bisphosphonate drugs. I tried Fosamax – but had too many side effects. I thought about Prolia – but you get a shot and it lasts six months? Does that mean if it doesn't agree with my body – I will have side effects for six months. I told the doctor I had to find another path. Instead of discussing my options, she walked out of the exam room. So I began doing serious research. The bisphosphonate drugs work by not allowing the dead bone to leave your body as it usually does – in your urine. It keeps the old bone where it is, and when you get a DEXA scan, your bones look like you have had bone growth. It's just that old dead bone sitting there. When you stop taking the drug, you pee out all that "bone growth." In the meantime, you are lucky if you didn't have any side effects. Some of those side effects are very dangerous – osteonecrosis comes to mind. I talked to two women who had to have their jaws rebuilt. I turned instead to nutrition. Vitamins D3 and K2 (mk4 mk7) are the answer. A nutritionist has posted an excellent article about vitamin K2 – it's called The Ultimate Vitamin K2 Resource and his name is Chris Masterjohn. You can do a search for it. I will post a link here but it might be removed by moderators. Basically, vitamin K2 (mk4 mk7) sends all the calcium to your bones – not to your kidneys and not to your arteries. This is a big deal. And D3 is necessary for bone growth. I also take some calcium because I cannot eat enough, and I take a bit of potassium. I added 3 mg of boron in the morning and again at night – and ALL my arthritis symptoms are GONE – it's like magic. This is a small dose of boron, and you have to be careful with boron. Of course, you must run all of his by your doctor. Don't be surprised if your doctor doesn't know much about vitamin K2. My doctors know a little bit about vitamin K – but nothing about K2 (mk4 mk7). The mk4 and mk7 are the type of K2 that helps humans. It is very specific. I think vitamin K2 and vitamin D3 deficiencies may be the culprit for people with osteoporosis. If you take calcium, subtract the amount you eat every day. There are trackers you can download on your phone – you just tell it what you ate and it figures out your calcium intake for you. Also, both calcium and magnesium are minerals. The total amount your body can absorb is 500-600 mg TOTAL for both. So if your calcium is 1000 mg, break it in half and take it then take the other half at least four hours later… and if it has magnesium in it – you have to add that into the equation. The best way is to eat your vitamins. But you cannot really eat enough K2 and D3. I am in a support group with other women who won't take those drugs. Many of them are seeing real success with their DEXA scans. Some of them have walked their osteoporosis back to osteopenia and some are getting even better than that. I will be getting a DEXA scan in a couple of months – and I will share my results. I was fracturing in 2018 – thank goodness that has stopped. Another thing about vitamin D3. Research has proven that vitamin D3 reduces the number of falls in the elderly by more than 50%. You can Google that and see the medical journal articles to prove that. So it is good for bone growth and it reduces falls in the elderly! If you can afford to see a nutritionist, do so! If not, there are support groups out there that will cheer you on and give you more to read than you can handle. Here is the website for the vitamin K2 ultimate resource – if the moderator takes it down – just do a search. This guy has a book coming out – and I have preordered it. He has great information. Good luck to all of us! https://chrismasterjohnphd.com/blog/2016/12/09/the-ultimate-vitamin-k2-resource
Liked by cherriann
@parrotqueen just wanted to say thankyou for mentioning the Prolia Support Group on FB. Found a second one called "Prolia Side Effects" which has already been an eye opener.
Liked by jmanj, parrotqueen
My favorite FB group is the Ostoporosis Natural Remedies group. Lots of great information there. If you don't see anything new – give it a day or two and it will come back to life with tons of stuff to read. You can always go to the area that says something like Search This Group and type in what you want to read about. I'm reading about anti-nutrients again today – I have to read that article again and again – I can't seem to get the names to stick in my head for some reason.
This is very rare but wanted to know if it has happened to anyone on this site. It’s a severe jaw infection and bone loss. It takes a long time to get relief. I would like to know the outcome for others that have gone through this. This is happening more and more and maybe not so rare after all. Prolia is poison!!!
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.
Liked by JK, alumni mentor, jmanj, parrotqueen
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.
Liked by sue225, jmanj
Could you tell me how to get to the Support Group on Facebook?
Liked by Chris Trout, Volunteer Mentor, parrotqueen
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.
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.
I don't think I'm allowed to post web addresses here – but we can try
I am new to this group. My doctor just prescribed Prolia, but with all the side effects, I'm not sure that's the way to go. In reading all of the discussion on Prolia, I haven't seen anyone share their results. I'm wondering if anyone has actually improved their bone density by having the prolia injections. Thanks
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
Liked by kay71
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.
Osteoporosis Spreadsheet 2 (Osteoporosis-Spreadsheet-2.pdf)
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.
Liked by Chris Trout, Volunteer Mentor
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