Prolia treatment for osteoporosis: What is your experience?

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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I use the generic of Prolia. Orals possibly caused reflux. Not sure I've been without side affects. Bowel changes, but might have coincidental other issues. Interesting about Reclast. Almost considered, as Mom's been on. Anyone doing bloodwork, for calcium levels, D, creatine levels, or such. Seems different tests, by the two endocrinolgists I've been to.

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@contentandwell,

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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@contentandwell,

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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@artscaping Thank you so much, Chris. This is great information. I too will be playing catch-up. As I have indicated in a number of posts, I am absolutely fuming at my PCP that he dropped this ball. It sounds as if Tymlos may be the best option for me too although I hate the idea of giving myself injections. UGH. Those are the only two that build bone, right? My DEXA report says I am at high risk for a fracture.
That is a good question, what to do when the 18 months is up. I will do more research on Tymlos. As I commented above, I called the rheumatologist I want to see today and she is now scheduling in December. I asked to be put on the waitlist and was told that I would be, but that it is a very long waitlist. 🙁 Have you asked your doctor what will happen after the 18 months? Are you seeing just your PCP for this or are you seeing a specialist too?
Where you mention daily exercises you mention walking. Walking is great for cardio and general conditioning but I just read that in a study done with a test group that did not walk, and a group that did walk daily, there was no difference in bone strength much to the surprise of the researchers. I also saw somewhere that high impact exercises are good, but if your bones are weak should you really be doing high impact? I am thinking I will do some Zumba, that's pretty good exercise, burns a lot of calories and I think will be good for bone strengthening. I did it a long time ago, before having knee replacements, and a lot of women I know at my health club do it. I enjoy the pool and that too is good for some things but I doubt it does much for bones and right now that is a huge consideration for me.
I bought the ebook, "Strong Women, Strong Bones" by Miriam Nelson. I haven't read far into it yet but I think it will be good. My sister has osteopenia and her doctor recommended it. The same author has also written "Strong Women Stay Young" which too delves into bone-building but is not as specialized as the former.

@llwortman I can certainly understand your reluctance to take the drugs you mention. You did not mention Tymlos or Forteo. I believe those are different than the drugs you mention. Would they possibly be an option if you got to the point that Chris and I are at, needing to rebuild bone?
JK

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@contentandwell Hi my girlfriend has osteoporosis and the Dr. told her to lift light weights like 2 lb and she uses the bike ,swimming which are all good . She also takes the Vit. D3 calcium and magnesium. Her osteo hasn't gotten any worse and its been quit awhile since she started but no fractures. She was at first on Fosamax but had to go of as it was affecting her jaw bone

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@artscaping Thank you so much, Chris. This is great information. I too will be playing catch-up. As I have indicated in a number of posts, I am absolutely fuming at my PCP that he dropped this ball. It sounds as if Tymlos may be the best option for me too although I hate the idea of giving myself injections. UGH. Those are the only two that build bone, right? My DEXA report says I am at high risk for a fracture.
That is a good question, what to do when the 18 months is up. I will do more research on Tymlos. As I commented above, I called the rheumatologist I want to see today and she is now scheduling in December. I asked to be put on the waitlist and was told that I would be, but that it is a very long waitlist. 🙁 Have you asked your doctor what will happen after the 18 months? Are you seeing just your PCP for this or are you seeing a specialist too?
Where you mention daily exercises you mention walking. Walking is great for cardio and general conditioning but I just read that in a study done with a test group that did not walk, and a group that did walk daily, there was no difference in bone strength much to the surprise of the researchers. I also saw somewhere that high impact exercises are good, but if your bones are weak should you really be doing high impact? I am thinking I will do some Zumba, that's pretty good exercise, burns a lot of calories and I think will be good for bone strengthening. I did it a long time ago, before having knee replacements, and a lot of women I know at my health club do it. I enjoy the pool and that too is good for some things but I doubt it does much for bones and right now that is a huge consideration for me.
I bought the ebook, "Strong Women, Strong Bones" by Miriam Nelson. I haven't read far into it yet but I think it will be good. My sister has osteopenia and her doctor recommended it. The same author has also written "Strong Women Stay Young" which too delves into bone-building but is not as specialized as the former.

@llwortman I can certainly understand your reluctance to take the drugs you mention. You did not mention Tymlos or Forteo. I believe those are different than the drugs you mention. Would they possibly be an option if you got to the point that Chris and I are at, needing to rebuild bone?
JK

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