Mayo Clinic Connect
I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you
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Please axplain, what is PMR? The significance of a negative test for it? I am really interested in this topic, I can live with the aches and pains. I have been estrogen deficient for 15 years due to breast cancer. I have had multiple breaks and I am only 53, so treating my osteoporosis is very important, but it seems the risk of bigger problems is starting to mount. Thank you for being here.
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@auntieoakley I wanted to jump in here . I have had osteopenia for yrs, now my bones are getting thinner so Dr. suggested a liquid calcium which I take everyday. I get it from Amazon it is called Bone Meal Powder and has calcium, Magnesium, and Phosphorus in it I already take D3 My hip that use to hurt when I slept on it doesn't anymore like it use to . Good luck . I don't have PMR so cant voice to that .
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I have been on denusamab for a year and a half, I recently read about the rebound. I have some aches and pains but it is tolerable. I don’t want another incident of many fractures at once. The last one was really brutal. I am trying to make some informed choices, but it is difficult sometimes to get all the information.
I have had at least 6 injections of PROLIA, the first was without side effects. Subsequently, I have struggled with pain in my back and legs .
This past spring I developed PMR , ( was diagnosed by a rheumatologist). My blood tests were normal so it was not understood how I could have PMR.
I will not be taking PROLIA injections any longer , as I believe this medication contributed to my PMR.
Our grandmothers never took any of these medications and they did just fine .
@sidsell1 Our grandmothers, or in this case my mother (she would be 112 if she was still alive) perhaps had better diets, and also did more physically and that kept their bones healthy. I have just discovered that I have osteoporosis so I have been doing a little research. Activity helps to make your bones stronger. Earlier generations worked harder and that activity probably did help. My mother did fracture her ribs though leaning over the meat counter to reach something at the back of the case. There are specific exercises that help to strengthen your bones. I just bought a book, "Strong Women, Strong Bones" that was recommended by my sister's doctor for my sister's osteopenia. I haven't gotten very in to it yet but I hope to build a new exercise regimen that will help me.
It's ironic, I fractured my femur so I suggested to my PCP that I have a bone scan, which was when I discovered that I have osteoporosis. Then I read that lack of activity leads to bone weakening. Well, with my fractured femur I can't do much so I suppose my bones must be getting worse every day.
Thanks for sharing this story. I will order the book and read it:-) I was on Prolia, unfortunately it made me very ill after each injection (2).
I also encountered monthly respiratory infections! I quit the Prolia with the approval of my doctor who pointed out a 2018 European study revealed Prolia can cause femur and spine fractures. I am a runner..or I was until August, when I couldn't walk on my right leg. MRI revealed impact fractures. Suspect was in fact Prolia! My grandmother like yours, ate well exercised and lived to 86. My favorite questions is, "What did our grandmothers do?" Thanks again for your insights.
@llwortman Linda, I never used to check these discussions because I had no idea I had osteoporosis — my PCP dropped the ball after I was diagnosed with osteopenia in January of 2014 and I never had another Dexa scan after my fracture occurred – I called and asked if I was due for one. Now that I know I have osteoporosis I am researching as much as I can so when I see a rheumatologist I will be somewhat informed. Is that the type of doctor you saw, a rheumatologist? I was very surprised when my PCP's office said I needed to see a rheumatologist.
It seems as if none of these bone medications are without some very real faults, we have to decide which are best for each of us, and hopefully have a really great doctor to help us through it. I know of at least one person who has osteoporosis but will not take a medication because of the side-effects but I am still recovering from my "minimally displaced fracture of the trochanter of L femur" so I know the pain involved in even a minor fracture like this and do not want that to happen again if at all possible. I have even read that 20% of the people with a hip fracture die within a year due to inactivity.
I thought I was doing all the right things, exercising, and eating well but I now know that I was at a fairly high risk because three of the drugs I take – levothyroxine, prednisone, and my immunosuppressant, sirolimus — can contribute to weak bones, plus I have lost a very considerable amount of weight. I was basically a fracture waiting to happen, "the perfect storm".
Since you got off of Prolia, did you start taking a different drug?
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I go to a rheumatologist, but I was already seeing a rheumatologist when he diagnosed me with osteoporosis. Other people see endocrinologists–it depends on the availability of different specialists and what they treat.
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@ritafarmer Thanks, Rita. That's another doctor who I would not have expected to be involved with osteoporosis! I have an endocrinologist so I just checked his profile and it says his clinical interests are "General Endocrinology, Diabetes, Thyroid Disease" so I guess he does not deal with osteoporosis. I hope I can get in to see the doctor at MGH. Hopefully being a post-transplant patient there I will get a little priority.
@contentandwell Hi JK My D.O PCP was the one who sends me to bone density and her report that I also get said about my bone thinning. I rheumatologist is a good one to go to since they have knowledge of the muscles and bones.
Like you, I thought I was doing all the right things, I lead a very active lifestyle and I eat well. It never occurred to me about the loss of estrogen causing me to have very early osteoporosis. Then I had a fall and crushed my whole right side. So much pain. I am concerned about new fractures. I like you I read the study, about dying after a fracture, it is concerning and so are side effects but a doctor you trust can help you through all of this. I also plan to ask my doctor about the side effects and the mounting evidence for rebound bone loss. Because I really have to err to the side of no more fractures. I am 54 and healed but I can remember all of that pain.
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@lioness. I just heard back from the doctor I want to go to. They are scheduling in December in the Waltham office, which is where I prefer to go. If I could be seen sooner in Boston I would go there, my DEXA report says I am at high risk, but they are scheduling in January!
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@auntieoakley, my best advice. Don’t fall. If you do fall, grab your shoulders and roll. Protect wrists and hips until you find out the results of the tests. My PCP requested the dexascan for hips and wrists. After 4 months of torturous bone pain reactions from Boniva, she sent me to an endocrinologist because other comparable medications contain the same ingredients. She requested spine, vertebrae, images to see if I had any fractures. I didn’t…just weak and thin. Doesn’t mean I won’t have them if I don’t strengthen and rebuild bone density.
Of the two medications that actually build bone, I chose Tymlos.
And so, I probably had to wait 6 months. I was SO careful. My mother broke her hip and died within a year. I am now getting ready to pick up another pen. The injections are daily for 18 months and once opened the product does not have to be refrigerated.
May you be free of pain and fractures and falls. Check in so I can follow the developments and your story. It can be shared so that others benefit from your experiences. Be free of discomfort today. Chris
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Thank you, I have had scans and I am definitely high risk, I have had 3 prolia injections already. If you saw my profile, you know I play with large farm animals so not getting jarred or falling really isn’t an option. Oddly enough my hips are a lot denser than my spine, maybe riding has benefits. Thank you for your well wishes and information.
@artscaping this is very frightening. Is it any wonder that I am furious at my PCP for letting this slide, especially knowing my high number of risk factors. My DEXA report says I am now at high risk for a fracture. 😖.
From I have read Forteo and Tymlos are the two medications that can build bone so I definitely think I need to be on one of those, along with all of the other bone strengthening strategies like exercise and diet. May I ask what led you to choose Tymlos? The more information I can gather the better off I will be, I believe. Was PT prescribed for bone strengthening exercises?
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I am not taking any drugs. They do not agree with me and I do not want to continue to make my bones more brittle with the Osteoclast drugs. I am eating lots of kale, almonds, grains, yogurt also taking vitamin D, & calcium …all prescribed by a doctor and a nutritionist. I am also tested for my thyroid TSH. I exercise at least 5 days a week. My endocrinologist put me on Prolia and took me off Prolia after two injections and the discovery of a lung nodule. I cannot do Fosomax as it makes my joints hurt. I know hundreds of women who have had jaw and dental issues with Fosomax type drugs. My dentist gave me a report that was shocking regarding several Fosomax studies and did not recommend Fosomax type drugs.
I see a Sports Medicine doctor and a PT in Sports Medicine and I feel that I am improving. My Sports Medicine doctor was very impressed with my impact fractures recovery time. i am ridding a bicycle 12 miles a day.
I am never doing Prolia or different drugs similar to this again. It was explained to me that bones build up every day and also tear down as a natural bone building process. Osteoclast drugs only build bones up stopping the normal tear down process of our bodies building strong bones. The end result is bones continue to become more and more brittle. It is also explained in both a October 2018 European Medical Journal reported on line and also in a Canadian report by University of British Columbia. As I understand it, there are black warning labels on Prolia drugs in both Canada and Europe. My pulmonologist ordered a CT scan and I have a lung nodule, then read me a report about Prolia that said Prolia can in fact cause lung nodules. For me the risk certainly out weight the benefits.
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Here is some information about the way Tymllos stimulates bone cells to produce new bone tissue. Tymlos is a lab-made copy of part of the human parathyroid hormone-related protein (or PTHrP), while Forteo is a partial copy of parathyroid hormone. In our bodies, the PTHrP and the parathyroid hormone do many things, notably stimulating bone cells called osteoblasts to produce new bone tissue.
Tymlos is meant to be injected daily for 18 months. Major difference with Forteo is that Forteo has to be refrigerated and taken for 24 months which makes travel pretty difficult. Tymlos is meant for patients with severe osteoporosis. At 77, I am already playing catch up.
After my severe reaction to Boniva….all of the other bisphosphonates were ruled out. I didn't like the idea of taking medications once a month or every three months. What happens if you have a reaction….and you just had the injection? I chose the daily option which gives me an immediate opt-out if necessary.
I didn't like the pricing history of Forteo with double-digit percentage price hikes year to year. My insurance accepted Tymlos and it is less expensive. The women's health research emphasizes that women need to do other supportive measures to improve their bone health….daily exercises like walking and healthy food choices.
Major question for me is what do you do when the 18 months is over and you are still around and need something to keep your "new" bones healthy? And there are some researchable issues like side effects. I hope all will be revealed in due time. May you have a pain free day. Chris
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