Osteoporosis of the spine and Boniva

I could not tolerate this medication due to my chronic migraines. However, I took the IV version without incidence. Ultimately, though, it didn’t help my osteoporosis and moved onto other medications. Good luck! I hope this works out for you!

@missymew, Good afternoon. Thanks for visiting us on Connect. As volunteers, we cannot recommend medical treatment or medications. What we can do is share our experiences with you so that you may add to your own body of knowledge and be your own advocate for medical issues.

I am afraid I do not have a success story with Boniva and evidently, it didn't get a very nice welcome from my body. I do like to give medications a good trial before giving in. So I tried the once a month Boniva for 4 months and the result was the same....severe pain in facial bones, eye sockets, jaws, even the sternum, and rib cage within 24 hours. The discomfort took up to 10 -15 days to recede.

My PCP said she had never heard of anything like what I experienced and discontinued the medication. So...if you cannot take Boniva...there isn't much that doesn't have the same ibandronate component for osteoporosis.

I ended up with an endocrinologist who helped me get the daily self-injectable Tymlos. It can be very expensive if you don't have the appropriate RX coverage and if your provider doesn't fill out all the exception papers and monitor the pre-authorization process. Saying that I had no other options was the game changer and for that, I thank my best friend GiGi....a nurse and teacher.

However, I have had no side effects and sure don't anticipate any. And with Tymlos you don't have to refrigerate that medication as you do with the other choice which is called Forteo.

For a while, I wondered if I needed to spend time and money on this issue when I am 77. However, I do want a chance to have a reasonably good quality of life with as little pain as possible.

Another good thing is that you only take Tymlos for 18 months and the results can be good. Are you still having no side effects? Do you have to take Boniva for a very long time? Please have happiness today and the causes of happiness. Chris

Thank you migizii for your response. This is all new to me and I haven't heard much about Boniva at all, good or bad, so I appreciate your feedback. I am considering getting another opinion and a new doctor. I wish you health and happiness.

Hello, Chris. Thank you so much for your response. This is all new to me as of May 13th so I am reaching out to find out all I can. I have not heard much about Boniva in any discussions so I am concerned about the success of its effects on my spine. I have had aches and pains that are new to me since I started on the medication. I, too, have the sternum pain issue but my side effects are minor compared to yours. I am wondering about the power of the medication in treating my condition. Also, I am lacking confidence in my present doctor's care so I am searching out other doctors. It is so helpful to know I have another source for opinions and discussions. I appreciate your response and your wishes. Happy thoughts for your health as well!

@missymew, It is a lot of information to process so that you can make an informed decision. Medication sensitivity may be unknown. Everyone is so different. If you want to do some preparation, there are sites that can give you some before and after bone density scores with different treatments. Sometimes it depends on where the scan is....of your wrist or your ankle or even your hip. Let me see If I can put my finger on one. I'll be back. Sleep well. Chris

@missymew, Here are results from some clinical trials with Boniva. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2898002/

If I read your post correctly you are trying to ameliorate the fact that after menopause we tend to use bone faster than we can replenish it. So..the medication that can achieve that objective while not causing side effects and being affordable and easy to administer....now that is what we are seeking.

Here is more information that may even be more helpful. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3192207/
And from Mayo Clinic.....www.mayoclinic.org/tests-procedures/bone-density.

Best wishes for learning everything thing you need to know and everything you need to ask your practitioner about so that you can become your own advocate. Remember that making a good decision, gathering information and weighing your issues, including your spine, doesn't necessarily mean that you will make the right or even a good decision. Your health care team can weigh in and help you. And please stay in touch as you proceed on this journey. Let us know how we can help. Have a peaceful sleep tonight. Chris

Hello, I am wondering if anyone else has had a problem with kidney disease and as a result had to be taken off of their osteoporosis medications? If you did, did removal of the osteoporosis med from your body improve your kidney function? For me, I was diagnosed with Osteoporosis about 10 years ago at age 54. Since that time, I have used Forteo, Prolia, and now Tymlos. All 3 drugs made me very weak and dizzy. In December 2021 Prolia resulted in MRONJ or destruction of jawbone. As a result, I can no longer use any bisphosphonates drugs. Now, recent Blood tests show I have developed elevated Creatine Levels or Moderate Kidney Disease. I am not overweight, not diabetic, don't smoke, don't drink, I eat lots of fresh fruits and vegetables, and drink lots of water. I am wondering if osteoporosis meds have affected my kidneys and that is why all meds made me weak & dizzy as my Kidneys were not able to filter the medication from my bloodstream? I will visit with my doctor again in 2 days about this problem to see if she wants me to stop Tymlos injection in order to control progression of Kidney problem. Thanks for listening. Best Wishes for good health!

I have had "moderate" kidney disease and honestly don't give it much thought. What is your GFR? There is a wide range that is termed "moderate" so it would help to know where you are in that spectrum.

Tymlos causes weakness and dizziness for many people. I do not think it is related to kidney function. It is very common. I have lately found it is better if I get up and get active. Previously I would kind of lie around and I think the weakness and dizziness were worse.

@betterhealth I am on my 17th month of Tymlos. I am scheduled to be on it for 24 months which is the maximum and I would love to be able to go the full time because some studies show a great improvement between the 18th month and the 24th month, but I am wondering if some problems I am having could be related to Tymlos.

I am not weak or dizzy from Tymlos, or at least no more than usual, but do have very achy legs. I am finding that I can't exercise for as long or as vigorously as I had been able to. I wish I had kept some type of journal because I'm not sure when my upper legs got so achy, I know they were not like that a couple of years ago. I am also having a problem with fluid retention and wondering if that could be Tymlos related.

I have a doctor's appointment this week and may have developed congestive heart disease. I have not seen that as a side effect of Tymlos but I do know of one other person who got that after being on Tymlos. Of course that could easily be coincidental.

Every drug that we use has benefits but also brings some problems with it. It feels like we can't win. This getting older stuff is not fun.
JK

I was on Boniva for a few months about 12 years ago. It gave me fibromyalgia that never went completely away. One of the side effects is "bone and muscle pain." I went to the dr so weak and in so much pain, then a rheumatologist and both said, Oh well, we don't know what it is so it must be fibromyalgia. I was about to take another dose of Boniva when I thought, hey, I should look at the side effects and there it was, on the label. Told the dr who said to stop Boniva to see if it helps and it did. It's just that it's still a lingering low level of pain in my life.