Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
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Good morning @arlene7: great to hear from you. I have Evenity on my list. I will get back to you.
May you be happy and free of pain today.
Liked by GailBL, Volunteer Mentor, lioness
Thanks for your responses to my post. I've been struggling with my choice to not take medication for Osteoporosis, which is why I posted it here. I want to do the things that will maintain my bones and joints. I had a laminectomy on my L5-S1 about 4 years ago due to it pressing on my spinal cord. It was successful. I still have a problem with my L4, which has slipped over my L5. I don't want major surgery for it, so my chiropractor uses Active Release Technique (ART) to keep me going pretty much pain free.
Since I had bariatric bypass surgery 6 years ago, I have been taking double the multivitamins that one would normally take. In addition I take 5000 units of D3 daily and a new liquid Calcium supplement that I found online. My iron runs low so I take an extra 45 mg each evening. I have fallen a couple of times in the last year with fortunately no broken bones. I did break the radial head on my left elbow in a fall 14 years ago, but it healed quite nicely. My bones have tended to dislocate rather than break.
I was surprised to learn here that once you start Prolia, you must continue taking it. I'll be curious to learn about the other medications, especially Evenity, and their side effects. My mother-in-law's femur (thigh bone) broke when she turned to get her mail at the box outside her house. She had been taking Fosamax. Another friend developed cancer in her jaw and she had also been taking Fosamax. Both have affected my choices. Thanks for letting me share.
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@gailb I forgot to tell you my dexa scan showed my L.Hip was T score was then -1.3 still osteopenia been this for 10 yrs .I,ve always gone the naturel route . Seen to many people with side effects and my girlfriend had a serious reaction to a reclast shot so that,s when I decided to not have any of these drugs. Good luck to all of us on this journey
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@gailb @artscaping @sue225 @lioness and anyone else who I may have missed who is searching for answers about osteoporosis and the best course to take. I am reading a Harvard Health Publication about Osteoporosis and finding it very helpful (this is something that you do have to purchase), but there are also great answers here to many of the questions:
and here from Mayo:
It sure is not an easy decision but it sounds to me as if the problems from the medications are fewer than the potential problems of trying to battle it with diet and exercise. Diet and exercise are great preventative measures, in fact I have purchased a book about it for my daughter who is in her late 30s. Bones start getting less dense at around 40 so the best time to start is early. I wish I had realized that myself, but part of my problem is that I have to be on prednisone which is bad for bones. From what I have been able to determine, exercise and diet may help to maintain your current bone numbers but rarely improve them.
@contentandwell That,s my problem also is that I,m on prednisone at times so this does,nt help the bones as for osteoporosis . My last dexa scan said I have glucocorticoid I am interested in hearing about this Evenity also That,s what happened to my girlfriend who was on Fosamax at first her jaw starting to hurt her so she went of it before it got bad . Now its been 10 yrs that she has gone just with the minerals vitamins and strength training and so far she is fine . I,ll have to ask her about her Dexa scan . This is what her Endocrinologist gave her at first . Her Vit d was very low so he gave her a high dose of D to take for a couple of months till her labs where normal . Now she only takes 5000 and does the exercise , calcium high dose .
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Yes, JK you are so right about starting early with a calcium-rich diet during the bone building years. It's like having a savings account of bone for the future. By the time each of us reaches our peak bone density it's harder to do. We should all be stressing the importance of nutrition and strong bones to our children, teenagers, and young adults.
There is not one medication on the market including over the counter that does not have a side effect. And natural remedies have side effects also and often do not go through vigorous testing and are not as carefully regulated. For me, at the stage I'm at, the benefits of the potent osteoporosis drugs outweigh their risks.
Thankyou for posting the links.
@contentandwell Also thanks for this information it is a big decision my rheumatologist is pushing me to take something.
Does Osteopina always progress to osteoporosis?
What can be done to help? I take plant based calcium
Thanks for your feedback, Sue. My mother took Prolia and ended up in the hospital with severe low blood calcium. So, I'm reluctant to start that drug. Also, my Endo did say what you have commented, that with Prolia there is no stopping it. Doctor favored Reclast over Prolia because she indicated Reclast stays in the body longer once you stop infusions, thereby being able to take off a year or two. I am very active, exercise, eat super healthy, take additional vitamins, and am otherwise healthy. It's just my bones that are in such poor shape! I'm very frustrated by the fact that women with osteoporosis just don't have better options!
@julie2020, @gailb, @sue225 and everyone else who has unanswered questions about osteoporosis medications.
1. There are three medications that work by building bone. Only three.
The length of time to be on one is determined by the condition of your bones at the entry point.
For example, I have only 5 more months of Tymlos. At that point, based upon where I started, all the work to be done by this medication will have been done. I can't stay on Tymlos after that point.
If you are on or considering being on either of the three, you may want to know when the road ends for you so that you can make a more informed decision for your initial bone-building medication. It appears that the bone-building benefit will last approximately two years after discontinuance and conservative medical support. At that time you will be faced with the next decision: What bone preservative will meet your needs for the rest of your lifetime?
Other conditions to watch while building bone are your levels of calcium and Vitamin D. The dosage amount has a lot to do with where you are now and what the demands will be for the direction you chose to take.
You will probably be comfortable about being able to handle any osteoporosis side effects with a medication dosage that lasts a short period of time. Daily would be preferred, but weekly is better than monthly, etc. etc. Make sure you can stop any time you choose without having to wait months for it to be out of your body.
2. There are post-bone-building continuation options at this time and the group is called bisphosphonates including:
This will be an important decision. The bone-building results last about 2 years and then you will need support from a preservative medication to protect the bone you have built.
For those of us who are highly sensitive to medications and find the side effects of bisphosphonates like Boniva impossible to handle, we will have to hope that there will be a post medication developed that does not have so many side effects. There may be one under development right now. I will continue to search. Anyone else have information to share?
Please leave me your questions, concerns, and share your decisions so we can all learn from each other. I am discovering that this situation has challenging complexity.
May you all be safe, free, and protected.
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Thank you, Chris. I've been researching Forteo and Tymlos. As of 12/31/18, it appears there were three reported cases of osteosarcoma in individuals who took Forteo. Tymlos is a newer drug and I can't find many studies on that. Did your doctor talk with you about this? My Endo just stated the threat of bone cancer exists only in the higher doses. She recommends one of these two drugs for me to start on for 18 – 24 months, followed by Reclast infusion. I'm just trying to decide if I feel comfortable with this. Does anyone out there know anything more about the link of bone cancer with Forteo or Tymlos? Thanks for your feedback!
What is the name of the book that you purchased for your daughter?
Fosamax does not build bones. Supposedly, it helps maintain bones as they are. I have been taking it since last November; but am considering discontinuing it, because of numerous cases of femoral fractures, jaw problems, and some cases of cancer of the esophagus. Because I have had radiation for breast cancer, I cannot take any bone-building meds except Evenity–which I will not take because possible side effects include stroke and heart attack. The FDA refused to approve Evenity until (finally) April 2019. I take vitamin and mineral supplements, and exercise regularly. Of course, all of us must make our own decisions. Good luck to everyone!
Luck and a strong constitution to offset the nasty side effects of all of these osteoporosis meds.
@nancyguy My girlfriend took Fosomax and had jaw problems now she has Barret's Esophagus don't know if it related but she told me not to take it . Then she had somekind of shot almost did her in . My one Dr. is insisting I take something but my PCP has me just on vit. min. I did have 2 fractures but that was from lifting heavy things . A friend here has osteoporosis and says they just break and there is no feeling when they do . She has a hump also . Im for just staying on the regimen I'm on . Good luck to us
Liked by GailBL, Volunteer Mentor, Chris Trout, Volunteer Mentor
Regarding bone breaks, I do not think hip fractures are painless. The mortality statistics related to hip fractures are not good. You sometimes never get out of a wheelchair. Vertebral compression fractures are no fun either and are very slow to heal. Curvature of the spine or the "hump" often leads to other problems.
So, in the end you have to be a gambler. (Drugs or no drugs).
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