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
Liked by Dee, Chris Trout, Volunteer Mentor, tikigod18
Hi, I've also been diagnosed with osteoporosis and my endocrinologist prescribed Fosamax once a week. My sister-in-law had three hairline fractures while taking Fosamax over a ten year period. I'm trying to decide whether to take it or ask for a different drug. Has anyone else had good or bad experiences with Fosamax? Thanks in advance for your input.
Liked by JK, Volunteer Mentor
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.
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 no longer take any osteoporosis drugs. I took Fosomax and Fosomax D off and on for over five years. I had aching and cramps in my legs that eventually extended up into my groin. The pain would sometimes be so severe that I could not lie in bed and was walking the floor at night to try and reduce the cramping. With continuing bad reports about the osteoporosis drugs I made the decision to completely go off them. I eat a healthy diet, take D3 daily, exercise at least five times a week, eat yogurt daily along with a probiotic, and feel 100% better! It is soon six years since I took osteoporosis drugs, I refuse Dexa scans and I have absolutely no intention of going back on any of these drugs until safer ones become available. When research and drug companies come up with a proven medication that will not harm me or make me feel ill, I will reconsider. I am not advising anyone else on what they should do, but for me, this is the choice I've made. I try to keep up on research being conducted and the reports about the drugs that are or will be offered on the market, and hope that eventually effective and safe osteoporosis medications will be available.
What kind of bowel changes have you had? Due for my fourth injection in November. Have become laxative dependent since being on Prolia (also constant bloating). My bone density, however, has increased significantly.
My endocrinologist has me on 2000iu VitD daily. My blood levels were low before starting the VitD.
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
You can go on Prolia to maintain the bone density achieved while on Tymlos.
Liked by JK, Volunteer Mentor, Chris Trout, Volunteer Mentor
@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?
Liked by Chris Trout, Volunteer Mentor
@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
Liked by Linda, alumna mentor, JK, Volunteer Mentor
@lioness. Thanks, Linda. Up until this injury I was doing all of that. I was using 10 pound weights and about to increase that. I did start taking calcium with vitamin D too. I have been doing a lot of research and I have read that although swimming and walking are great for overall conditioning and cardio they don’t help bone strength much at all!
At this point I think Tymlos may be the best drug for me but I of course will be discussing that with the doctor when I get to see her which probably won’t be until December. I asked to be on the waiting list, and I will be, but the person I spoke to told me there’s a very long waiting list. I am sure I could see someone sooner if I chose to go to a doctor up here but this whole thing has been the last straw in my losing confidence in most of the doctors up here, so I will see a rheumatologist at MGH. It is very upsetting to think that my PCP, who is highly regarded by other doctors, let this fall through the cracks.
I do think I will look into the bone broth you mentioned. I am sure that it can’t be something that my transplant team would say I should not use but I will, as always, check with them first. Some of the restrictions are very surprising.
@contentandwell, Good morning. Here is a link to the Tymlos discussion. Just may be helpful for you.
https://connect.mayoclinic.org/discussion/tymlos/?utm_campaign=search . Be happy todayl
@sue225, Thanks for responding. That may be an option at that time. Right now it has way too many side-effects for me.
Be happy and free of pain.
@cottendandwell I understand as long as you do your research and I know you are . We all have to do whats best for us as we are all made up differently. I is a difficult path anymore so good luck know I care and will help in anyway I can
There is Forteo, Tymlos and one other according to my endocrinologist but unfortunately, I can’t remember the name of it….perhaps someone here can. I fractured my foot last winter and things are still not good (fractures are healed now-I am on Tymlos now-but they discovered some pretty extensive arthritis also). I wish you the best in finding results that work well for you so fractures do not enter your life…..they are challenging.
Thanks @migizii Discovering that I have severe osteoporosis was actually due to a trochanteric femur fracture. I called my PCP and asked if I was due for a bone density scan. Turned out I was very overdue since my last scan was in 01.2014 and at that point I had osteopenia. I now know that I should have been getting scanned at least every two years after that. For me this is especially true since I have three medications that can negatively affect bones, plus I lost a lot of weight.
You bring something up that I wondered about. If you have osteoporosis does it take longer to heal? I was told this injury usually takes about three months but I am past two months and still in a lot of pain. I wonder if I will ever be back to normal.
Also, my PCP told me to see a rheumatologist but apparently some people see endocrinologists. Which is better for osteoporosis? I already have an endocrinologist whom I like a lot and is very highly regarded. I did check his clinical interests and there was no mention of osteoporosis.
I sure wish I had known I should have been having scans every two years, I would have taken the initiative to make sure that happened, way back then, not after fracturing something.
@migizil, @contentandwell, Here is a link that classifies and compares Forteo and Tymlos. I haven't found a third medication in either of these two categories of bone-building medications. Hopefully, you can survive all the ads. Do those Ad blockers really work?
Have a lovely, peaceful evening. Chris
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