How did you manage the pain side effects of Prolia?

@parrotqueen I'm so sorry to hear about Baby I thought she was better When I fractured my back at work ,my dog Yoda fell of my bed and fractured his I couldn't take care of him he was ,15 so had to put him down cried like a baby Waiting to hear your results of dexa scan take care

@sue225 It is a worry because all of these osteoporosis prescribed treatments can have serious side-effects. I think the risk of one of those is less than the risk of fracturing a bone though.

The endocrinologist I am going to for my osteoporosis is the head of the Bone Density department at MGH so I think she must be very well regarded and very learned.
JK

May I ask what that is? I am currently on Prolia, which I have no problem with. I had a severe reaction to .reclast and will not take it again and had side effects from Forteo and Tymlos, so my options are limited. I did well on IV Bonita, but it was not effective in helping my bone loss.

@migizii what happened to you while on Reclast? And did the side effects persist for many months? I am scared to get the Reclast infusion this summer. Are you considering discontinuing Prolia eventhough you have no side effects?

@sue225 I became very sick for about ten days and initially thought I had a bacterial infection related to my bronchiectasis. Muscle and joint pain followed, persisting for a few months. I had previously been on Prolia and had taken a year holiday to give my body a rest from the medications (and returned to osteoporosis levels). So, I saw a new endocrinologist at Mayo (my previous provider had retired locally) and we had decided to return to Prolia as it had worked well for me. Then, fast forward six months and I fell down some stairs and broke my foot (which involved a long recovery process). The doctor switched my medication to Tymlos for bone building and I initially tolerated it but slowly I began suffering ever increasing leg pain. So, now it’s back to Prolia. I am not considering discontinuing it as I have been on and off these medications and I have not been able to maintain healthy bone density without them. I hope this helps.

@migizii thanks for sharing your experience with Reclast. I have had good results according to the dexa scan which I had after a year and a half of being on Prolia. Very good results. You need to know one very important thing about Prolia. If you stop Prolia after having had about three injections (one is okay), you risk getting vertebral compression fractures up to two years after stopping if you do not start another osteoporosis medication. This is referred to as a "relay" drug. Amgen tells you this in their information pamphlet to both patients and doctors and doctors sometimes neglect mentioning this little detail. Drug holidays from Prolia are no longer recommended.
In my particular situation it's a bit like (if you'll forgive the expression) "damned if you do, and damned if you don't. (Maybe). To date, I have not had fractures.
Very sorry to hear about your foot and the long recovery process. I wish you good health. It's a leap of faith with these meds.

I'm going to ask my infectious disease doctor if it is safe to get a DEXA scan now (I don't have an immune system - so she has me staying home) - I've been doing supplements for a while now and I should be good to test - see if I've made an improvement. I stopped fracturing - so there is that. I will absolutely never take the "bone building" drugs like Prolia or Relcast or Tymlos. Never going to happen. I know too many doctors and scientists who have told me the truth about those drugs. It took years for me to get into this shape - so it will take a while to correct - but I'm on my way. Happy Memorial Day weekend to everyone here.

@parrotqueen I hope she gives you the go ahead but with the Memorial day weekend and being so open now dont bet on it . I,ll wait but am anxious to hear from you on this

I wish you luck with your supplements, @parrotqueen. I know how opposed you are to osteoporosis drugs but they do help many people. I think everyone really needs to research this themself and decide what is best for them.

I have gone a long time since my last DEXA at this point. I was supposed to start a drug by now but due to circumstances have not. I have been doing calcium and vitamin D but not boron, which is somewhat controversial from what I have read.

If you do not have confidence in your doctor and don't feel you can trust that doctor to try to do what is best for you, then it's time to find another doctor. I believe it's also very helpful to get more than one opinion in anything other than the most basic things.
JK

Oh JK! I have so many doctors on my team! Sadly, my internist retired and I'm breaking in a new one. I have at least six doctors I see on a regular basis and they all know about one another. My neurosurgeon/endocrinologist and infectious disease doctors talk straight with me. And one of my best friends is a doctor (and Nobel Prize in chemistry winner) and we talk a lot. I've been very lucky to work with doctors and scientists my entire life. But even my favorite, most knowledgable doctor made a huge mistake two years ago and prescribed a drug in a category I had warned her I could not tolerate. Antidepressants make me hypomanic (No, I'm not bipolar - but certain drugs can cause a person to become hypomanic). I got down to 90 pounds and charged over $43,000! I live on Social Security! I cannot possibly afford to pay this huge sum back. It took me a year and a half to discover that it was the drug she was giving me for sleep (trazodone). I had taken it for 15 years with no problem, but when I was going through a stressful time, she told me to double the dose. So I trust no doctor - I always do my own research. I know she feels very bad about the mistake - but it made me realize you cannot trust anybody - you have to do your homework.

Also JK, you might want to check into Vitamin K2. I wish I'd remembered to make a note of where I read this - but they have found that vitamin K2 does help people hang on to their bones - and gave a small improvement in people with osteoporosis. I'll take any improvement I can get. The main thing K2 does is make sure calcium goes to the bones, not to the arteries or kidneys. This is a fabulous, easy to understand article about K2 for anybody that hasn't read up about it yet: https://chrismasterjohnphd.com/blog/2016/12/09/the-ultimate-vitamin-k2-resource. I also take probiotics and I do not eat any sugar at all (I don't even eat much fruit - just a few berries now and again - and I avoid high sugar vegetables). Sugar is very bad for those bones.

You are so right - everybody needs to do their own research. But also, don't take anybody else's word for anything - don't just listen to what your doctor says and think you have done your research. Doctors do not know that much about nutrition as a general rule. Consult a nutritionist or read some books, medical journal submissions, etc. I have given out the address for ConsuemrLab.com here before and the moderators allowed it. It is a consumer watchdog group for supplements. They test all the supplements they can to be sure they are what they say they are, at the strength they advertise on the label, and that they can be absorbed by the body. They also have a ton of research papers you can read on all the supplements. Probably more information than you want! Membership is about $37 a year I think. It is worth its weight in gold.

To be fair to doctors: They have enormous caseloads and every person's body is different. There are a lot of diseases out there to keep track of - and new ones popping up all the time. They don't have all that much time to do research. You have to learn about your own body - what feels good and what doesn't - what seems to help. I have been doing this for years. I had a horrible, incurable skin disease - hidradenitis suppurativa. OMG It was horrible. Then one day, a guy from India came into our support group and said turmeric would stop it - and that was that! So truly, know your body and do research and never stop learning.