Hesitant to begin drug treatment for my osteoporosis

Posted by artistel81 @artistel81, May 14 6:30am

Hello! My first post here as a new member. I am an active 69 year old female who was diagnosed many years ago with osteopenia but now have osteoporosis. When diagnosed with osteopenia I gave several drugs a try. I had side effects from all the oral choices I took, and when giving myself Forteo shots, broke out in hives all over my body. After that, I decided I would take my chances and go the natural route to keep my bones healthy with diet, consistent exercise and Calcium/Vitamin supplements. Fast forward to present time my last bone density scan was worrisome, (a -4,4 T score in my spine). An endocrinologist strongly suggested treatment, (shots or infusions), but I still fear side effects. I am currently trying to educate and empower myself by researching all options. I am already a bit overwhelmed with so many differing opinions. Drugs or no drugs?! The possible serious side effects of drug treatment still frighten me. Has anyone here diagnosed with more advanced osteoporosis, remained fracture free? Am I at such a high risk that I’m doomed without drug treatment? Thank you in advance for any advice, experiences, etc.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@wilkenl

My first Evenity injection will be in a week or so. I was all set to go a couple of months ago, but my labs had expired (must be done w/i 30 days of your appointment), so I had to get them done again before I could even reschedule, and then my endo didn't think my serum calcium scores were high enough, so I had to up my TUMS for a couple of weeks (Evenity needs a lot of calcium to work with). As for Fosamax, I took oral alendronate about two years ago, and though I stayed standing for at least an hour after every pill, I still developed GERD from it, which continues to bother me. My doctor hasn't suggested using the injectable form of Fosamax after Evenity - she has suggested Reclast as my follow-on treatment to secure whatever gains I get from Evenity. I have an appointment with her next week. I will ask why she didn't recommend Fosamax instead. By the way, using alendronate (bisphosphonates) before Evenity apparently reduces the efficacy of Evenity (according to the Great Bones book).

Spine: -3.4 Forearm: -2.6*
Total Hip: -1.9 (7.2% improvement over last scan) Femoral Neck: -2.5

* The osteo specialist I saw said that there is nothing you can do to improve forearm bone - something about the type of bone we have there. I like to imagine that the Crouching Tiger poses I do help strengthen those bones (weight bearing on arms).

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Please do not use Tums as your calcium source! Antacids interfere with calcium, phosphorus, and B vitamin absorption. Also, Tums uses calcium carbonate which is not easily absorbed by the body. You should use calcium citrate. I take 1,000 mg. This information is from my Endocrinologist. When you choose a brand, make sure it comes from the U.S. Not China. Lead, and are other toxins could be in brands manufactured in China.

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Please see my answer in response to Dr Lucas question, it should have been here.

Further to my answer there I haven't cross fingers had any fractures apart from minor ankle fracture, just tip of bone which led to my initial diagnosis.
I initially used Margaret Martin's book, Exercise for better bones, now go to gym, where I do some weights, use machines, also am trying tai chi. Also I mentioned Dr Fishman's yoga poses, these have been proven to be bone-building.
I'm not a natural exerciser so I focus on what I can eg just started squats and lunges again, I was told these better than machines at gym. All aspects of good health important so work on what you can. Also make sure you have protein, oily fish etc.
You can do it, build gradually, it takes time, be kind to yourself and enjoy life.

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Just want to let you know that my holistic chiropractor (she does not crack bones but uses massages instead) told me that the drugs can make the bones brittle so that the bones actually shatter. She is a very intelligent woman, and not an alarmist. Just one opinion.

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@ppat4pr

Just want to let you know that my holistic chiropractor (she does not crack bones but uses massages instead) told me that the drugs can make the bones brittle so that the bones actually shatter. She is a very intelligent woman, and not an alarmist. Just one opinion.

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@ppat4pr your chiropractor is right about bisphosphonates and Prolia over time, though they are pretty safe for certain periods of time and do increase bone density. These drugs work by reducing bone turnover (anti-resorptive) so yes, there is a risk of aytpical femur fracture over time.

However your chiropractor is wrong about Forteo and Tymlos, which build quality bone (anabolics, working through the parathyroid).

Evenity builds bone the first 6 months and is anti-resorptive for the last 6 months. It works by inhibiting sclerostin and has a lower risk than bisphosponates.

The problem with Prolia is risk of fracture when you get off, unless you transition to Reclast.

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@windyshores

@ppat4pr your chiropractor is right about bisphosphonates and Prolia over time, though they are pretty safe for certain periods of time and do increase bone density. These drugs work by reducing bone turnover (anti-resorptive) so yes, there is a risk of aytpical femur fracture over time.

However your chiropractor is wrong about Forteo and Tymlos, which build quality bone (anabolics, working through the parathyroid).

Evenity builds bone the first 6 months and is anti-resorptive for the last 6 months. It works by inhibiting sclerostin and has a lower risk than bisphosponates.

The problem with Prolia is risk of fracture when you get off, unless you transition to Reclast.

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Thank you very much for your most informative response. I really appreciate it.

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I took 3 months of Evenity shots for low bone density since I have not had any prior stroke or heart incidents. After 3 months I developed severe heart arrhythmias that were occurring several times a day. I went to see my cardiologist and it happened while I was on an EKG machine, so they recorded the whole thing. My heart went to 230 beats per minute for a minute and then dropped back down to 120, then went back to 230. I was oscillating like that for quite a few minutes as I sat on a chair, after getting off the EKG machine. I suspect that if I had any vascular blockages in my system, I would have had a stroke right then and there. I think the Evenity shots caused the arrhythmia episodes. I had to have an ablation heart surgery within 2 weeks. So in order to prevent a POSSIBLE bone issue later in life, I ended having cardiac surgery immediately. This is NOT a good tradeoff.

Since getting off the Evenity shots, all the arrhythmia episodes went away, thank goodness. I am back to diet and exercise. I now work out 7 days a week for about 45 minutes with both jogging and lifting weights to hopefully build bone. I am also told that new measurements such as trabecular scores are better measurements of bone quality than just bone density measurements. My trabecular scores are above average.

I am 67 years old and very active and healthy. I was diagnosed with osteoporosis quite a few years ago which was surprising to me. I suspect that being born in Asia, drinking milk was not the norm and also the local water was not floridated. I have not had a bone scan since the ablation surgery.

I don’t know if my reaction is just specific to me. It feels like the Evenity shots acted like stimulants to my system. I have never had any heart issues prior to taking Evenity and nobody in my immediate family has either.

The day before seeing my cardiologist and understanding that I had arrhythmias, I had gone to the gym and tried to do my usual jogging exercise. I had a very high heart pounding episode then as well and had to cut the run short. In the locker room, I had an arrhythmia episode and passed out. When the heart rate gets too high, it cannot provide the oxygen to the body anymore and that is when people pass out. The gym sent me to the ER where my heart rate came down.

By the way, the ablation surgery cost over $100,000.00 It must be a very profitable operation for hospitals. Thank goodness Medicare paid for it. The condition of limiting Evenity to people who have had heart conditions previously is not good enough in my opinion.

I know that I am very lucky to be in good cardiac shape and did not have a stroke despite extended periods of heart rates at 230 beats per minute.

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I hope you continue to practice a healthy diet and exercise several times a day. It must have been frightening to have such a reaction to Evenity.
I hope you have steady improvement over time.

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@grammy9

So haven't been on the tymlos or forteo yet? You are not doing anything yet?
I am getting a second opinion and then hopefully will make a decision. My spine dexa score is -3.2.

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I get another scan in November. I go back to doctor December 4th to see what they think I should do. I have not started tymlos or forteo...or evenity. Right now they just have me taking calcium, k2 and Magnesium.

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I feel exactly the same way. I just cancelled my first infusion of Reclast that was scheduled for 10/16/2024 after reading about the horrific side effects from real women on this site. I'll try the pills first if my doc doesn't fire me. 🙁

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@jonijean

I feel exactly the same way. I just cancelled my first infusion of Reclast that was scheduled for 10/16/2024 after reading about the horrific side effects from real women on this site. I'll try the pills first if my doc doesn't fire me. 🙁

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@jonijean do you have any GERD/reflux/heartburn issues? The orals can be hard on the esophagus. Many seem to do fine on Reclast but they tend not to post on forums! IF nervous you could ask for a test dose of half, and one hour infusion with hydration. I had a harder time with orals to be honest.

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