Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I apologize. I’ve already posted. I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I’m 60, active and fit. I’ve seen an endocrinologist and a rheumatologist who were both highly recommended. Both said “Evenity” before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I’ve read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I’ve been so healthy my body has carried me through so much life and adventure. I just don’t know what to do , whether I’m putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance “to show me how easy it would be”. I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven’t tried something like Forteo with a long track record.

@heyhey Being active, fitness, and well-being are important to you. You feel tearful, anxious, sleepless, pressured, and cornered regarding choosing an osteoporosis treatment that does not have long-term studies conducted.

It sounds to me that you already have your mind made up. You want to try a treatment that has more longitudinal studies already conducted. It sounds like your PCP is also on board with your decision.

You feel a lot of pressure to move forward with treatment. Due to your tearful, anxious, sleepless, hopeless, etc.symptoms, it's clear that this is extremely hard for you. I know you know you but, have a right to say no.

Members like @diana13 @artscaping @imatine @susanjd @donniehailey @ess77 @kathleen1314 @sunnyflower are part of other discussions in the group and they may be able to offer advice regarding the right treatment but also ways to advocate for yourself.

Due to your distress regarding this topic, I'm wondering if you've considered having someone to help you advocate for yourself when speaking with these providers about your care?

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Hi there heyhey. I am 76 and found out that I have severe osteoporosis about this time last year. I was referred to a good endocrinologist and he advised me to take Evenity – monthly injections. I didn't ask many questions and didn't know much about it. After about 4 months I was fatigued all the time and felt weak so I decided to stop the Evenity. I was told I had to get on another medicine right away because I would start losing bone density as soon as the treatment stopped. The doctor prescribed a once a day self injection Tymlos. After a couple of weeks I stopped it because of side effects – mostly severe fatigue and feeling "bad". The doctor then prescribed oral Fosamax which I tolerated well but I was concerned that I might be sacrificing a good treatment for a mediocre one. I asked him if I could go back to Evenity because I knew what it was like and it was much easier than the Tymlos. He wouldn't restart it. I decided I wanted a second opinion and I chose a Rheumatologist who had a reputation for treating osteoporosis. She consulted with the Evenity sales rep and he said there was no reason not to restart the Evenity. At the same time I got a new DEXA scan and I was very encouraged by the results. The scan showed a significant improvement in my spinal bone density. There was a small degree of bone loss in the hips. My big concern is the spine because I have other health issues. The gist of this story is that I am very sensitive to medications of all sorts. I have side effects that are the rarest. With Evenity the side effects are really very minimal. I gained some weight and I think the initial side effects I had might have been due to the fact that I was 20 lbs underweight when I started it the first time. I have gained the weight that I lost back plus a little more. I am only 5 feet tall and now 116. My average weight for many years was 109 lbs. I think that my diet had not been as good as I thought but when I started Evenity I was trying to get the calcium I needed every day from food instead of calcium supplements. It worked but I put on weight. I need to exercise more too but I have a painful nerve condition, neuropathy that makes that hard. My message to you is try the Evenity. It was very effective for me and I am not having any side effects now. I understand your fears and concerns as I had them too but you need to move forward on this. I think it is better to try the Evenity and see for yourself if you have a problem with it. I know it is a new drug but that does not mean that it is necessarily going to cause you problems. You will definitely have problems if you don't take something to stop the osteoporosis. There are alternatives that are "natural" and you can manage your diet and exercise to try to rebuild bones that way but it will be a much slower process. Remember that everyone is different and that more people will complain than will praise anything. Good luck to you.

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You might consider and research other options

At the age of 60 you are still capable of beginning bioidentical hormone treatment. At least consider cking your hormones to see if you have what you need to build bone and if not what you need to supplement with to build bone. ZRT has a saliva test that you may order yourself for an analysis. If you prefer you may contact pharmacy compounders in your area for a list of doctors who compound hormones, they will be able to order the hormone tests which you need.

I have had great results with bioidentical hormones and with strontium citrate. I think that it is a very conservative approach to try the bioidentical hormones first, then strontium if needed before you begin any big Pharma medications.

My numbers began at:
2004 Femoral Neck -2.8

In 2019 my numbers were:
2019 Femoral Neck -.6

no side effects, no fractures

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I have been on Evenity since June, 2020 and so far so good. I was diagnosed with severe osteoporosis and my Endocrinologist recommended Evenity at our initial visit, Vitamin D3 and calcium through foods. After thorough research and review of the side effects along with the newness of this drug with my Cardiologist and GP, I decided that the potential benefits outweighed the risks for me personally. All drugs were new at one time. Fortunately, I have not had any major breaks, but I have become extremely cautious and careful. I try to walk and do a few exercises now and then, however need to focus more on this. Hopefully after one year my scans will show considerable improvements, especially in the spine area. Then after the year, I believe I will have to make another choice as to how to maintain going forward.
I do feel that each person has their own decision to make depending on their own personal circumstance. Even though this platform is a basis of sharing information, it can become overwhelming. I will admit I questioned my decision at the beginning because of all that I read, however once I made the decision I felt confident it was the right one for me.
Good Luck to you.

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I would treat a doc being a paid rep for a drug or medical device as a possible sign that I want to seek another opinion from a specialist unaffiliated with any drug company.

Like you I am personally wary of taking a medication that doesn't have a long track record, especially if it must be taken long term.

Treating osteoporosis is not an emergency situation, so at 60 and in good health, you have time to do some research and make an informed decision. I'm not on my computer now so I can't give you specific links, but if you Google Evenity reviews and read what you can from FDA, NIH or medical journals you can get some idea of demonstrated effectiveness and side effects, as well as how long the trials and followup went on.
Let us know what you learn.
Sue

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@heyhey I am going through the same as you are right now. I have consulted with two endocrinologists and both would put me on Reclast but I brought up Tymlos because my scores are such that I think I should build bone and then maintain it. They both felt that was a good plan but had hesitated to suggest Tymlos due to the cost and it can be difficult to get approved. At this point, I am thinking I will start Tymlos after the first of the year, assuming Medicare will contribute to the cost. I have been told by others that whether or not Medicare approves it is based on how bad your DEXA scores are.

After taking that for two years I will need to go on something else, either Reclast or something similar. It's a very difficult and scary decision when side-effects are considered. I realize that the horrible side-effects only happen in a very small percentage of people but there seem to be a lot of bothersome side-effects also, and like you, @catharbert I tend to get side-effects frequently, often very rare ones.

@catharbert What side-effects did you have from Tymlos other than fatigue and a general feeling of being unwell? Did the doctor think those side-effects might subside after a while as happens with many drugs?
Thanks for your response.
JK

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@kathleen1314

You might consider and research other options

At the age of 60 you are still capable of beginning bioidentical hormone treatment. At least consider cking your hormones to see if you have what you need to build bone and if not what you need to supplement with to build bone. ZRT has a saliva test that you may order yourself for an analysis. If you prefer you may contact pharmacy compounders in your area for a list of doctors who compound hormones, they will be able to order the hormone tests which you need.

I have had great results with bioidentical hormones and with strontium citrate. I think that it is a very conservative approach to try the bioidentical hormones first, then strontium if needed before you begin any big Pharma medications.

My numbers began at:
2004 Femoral Neck -2.8

In 2019 my numbers were:
2019 Femoral Neck -.6

no side effects, no fractures

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Hi Kathleen, other than thyroid, what other bioidentical hormones are there, related to osteoporosis? And, are you saying that although your bone density T-score is worse, that your fractures have stopped?
Thx so much for clarifying. Just making sure I 'm understanding correctly. Warmest wishes, Sunnyflower

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@sueinmn

I would treat a doc being a paid rep for a drug or medical device as a possible sign that I want to seek another opinion from a specialist unaffiliated with any drug company.

Like you I am personally wary of taking a medication that doesn't have a long track record, especially if it must be taken long term.

Treating osteoporosis is not an emergency situation, so at 60 and in good health, you have time to do some research and make an informed decision. I'm not on my computer now so I can't give you specific links, but if you Google Evenity reviews and read what you can from FDA, NIH or medical journals you can get some idea of demonstrated effectiveness and side effects, as well as how long the trials and followup went on.
Let us know what you learn.
Sue

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Hello Sue, it's important to know, that I know of, most clinical trials are sponsored and paid for by the manufacturers of the drugs. Yikes. Warmest wishes, Sunnyflower

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@sunnyflower

Hi Kathleen, other than thyroid, what other bioidentical hormones are there, related to osteoporosis? And, are you saying that although your bone density T-score is worse, that your fractures have stopped?
Thx so much for clarifying. Just making sure I 'm understanding correctly. Warmest wishes, Sunnyflower

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My bone density scores are much better!!! I have never had fractures. I have had no side effects.
I take all the usual suspects vit d, calcium etc., jarring weight bearing exercise, etc.

Plus, I take bioidentical hormones, progesterone, estrogen, testosterone and strontium citrate.
Bioidentical hormones include estrogens, progesterone, testosterone etc.

My numbers began at:
2004 Femoral Neck -2.8 osteoporosis

In 2019 my numbers were:
2019 Femoral Neck -.6 normal bone density; notice the decimal before the 6

I would assume anyone with the change in bone density which I have experienced as shown in the above scores would be doing a jig and jumping for joy.
Maybe a review of reading tscores would be helpful.

Understanding Bone Density Test Results
A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.
A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. …
A T-score of -2.5 or below is a diagnosis of osteoporosis. …
The lower a person's T-score, the lower the bone density.

visual that old number line of minus and positive numbers; sorry this platform won't all a photo, but you will find one at this link
https://www.algaecal.com/osteoporosis-treatment/dexa-scan/

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@kathleen1314

My bone density scores are much better!!! I have never had fractures. I have had no side effects.
I take all the usual suspects vit d, calcium etc., jarring weight bearing exercise, etc.

Plus, I take bioidentical hormones, progesterone, estrogen, testosterone and strontium citrate.
Bioidentical hormones include estrogens, progesterone, testosterone etc.

My numbers began at:
2004 Femoral Neck -2.8 osteoporosis

In 2019 my numbers were:
2019 Femoral Neck -.6 normal bone density; notice the decimal before the 6

I would assume anyone with the change in bone density which I have experienced as shown in the above scores would be doing a jig and jumping for joy.
Maybe a review of reading tscores would be helpful.

Understanding Bone Density Test Results
A T-score of -1.0 or above is normal bone density. Examples are 0.9, 0 and -0.9.
A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. …
A T-score of -2.5 or below is a diagnosis of osteoporosis. …
The lower a person's T-score, the lower the bone density.

visual that old number line of minus and positive numbers; sorry this platform won't all a photo, but you will find one at this link
https://www.algaecal.com/osteoporosis-treatment/dexa-scan/

Jump to this post

@kathleen1314 thank you for the valuable information. The last Dexa I had showed that my spine's T score was of – 2.9. I am 43. Cancer survivor. I am hesitant to take any of the drugs that are being prescribed for osteoporosis. Reading about the biodentical hormones that you have been taking, knowing that I had an early menopause 5 years ago, I was about to go for such option but I have been told by my endocrinologist that such hormones had serious side effects like cancer and strokes, etc. Did your doctors mention that to you? Thanks

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@imatine

@kathleen1314 thank you for the valuable information. The last Dexa I had showed that my spine's T score was of – 2.9. I am 43. Cancer survivor. I am hesitant to take any of the drugs that are being prescribed for osteoporosis. Reading about the biodentical hormones that you have been taking, knowing that I had an early menopause 5 years ago, I was about to go for such option but I have been told by my endocrinologist that such hormones had serious side effects like cancer and strokes, etc. Did your doctors mention that to you? Thanks

Jump to this post

Imatine: Firstly, Hormones are not easy. Research can be murky and confusing. Each person is different and one must be vigilant watching symptoms. But optimistically, if one listens to their body, hormones will let you know very clearly if they need to be adjusted, unlike most other meds.
I researched bioidentical hormones exhaustively before I decided to use them, and I re research them regularly every few months to make sure that I am using them in the safest manner possible. The research is available if limited; especially available from Europe where bioidentical hormones are used more extensively.
Note that Estrogen, in various formulations, is currently FDA-indicated for the prevention of osteoporosis, but not FDA approved. https://pubmed.ncbi.nlm.nih.gov/12734027/

Ask your doctor for the research to back up their statement, that bioidentical hormones have serious side effects like cancer and strokes. The only such research I have ever seen quoted is from the WHI study which did not study bioidentical hormones. It studied Prempro and progestins (man made progestins, not bioidentical progesterone).

It is impossible to determine "serious side effects like cancer and strokes, etc." of bioidentical hormones by looking at a research study like WHI studying only Premarin and progestins.
Below is a link to a good discussion on Bioidentical Hormones on Inspire. Notice the confusion about what is bioidentical and what isn't, and posters who actually suffered strokes possibly caused by their chosen hormone regime but
not from bioidentical hormones. Anyone with known plaque in their arteries should use any hormone and calcium carefully. This is one of the main reasons doctors prefer to start hormones earlier in life rather than later because plaque may break loose or in the case of calcium harden.
https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/bioidentical-hormones-ku5csb/?origin=freshen
Also, note in your researching that for some reasons doctors and researchers actually use the term progesterone and progestins interchangeably, which is terribly confusing, but one is able to figure out with a close reading (progestin, man made not trying to be bioidentical, progesterone, chemically identical to the biology found in the body).
https://www.inspire.com/groups/national-osteoporosis-foundation/discussion/bioidentical-hormones-ku5csb/
"The main difference between synthetic or synthesized hormones and bioidentical hormones is accuracy. Bioidentical hormones replicate the exact molecular structure of naturally produced hormones (estrogen, testosterone, progesterone, etc.), resulting in a hormone that functions far better than synthetic forms." Note that the FDA does not recognize the term bioidentical.
https://mitchellmed.com/synthetic-vs-bioidentical-hormone-replacement-therapy/#:~:text=The%20main%20difference%20between%20synthetic,far%20better%20than%20synthetic%20forms.

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@kathleen1314 thanks a million for your great help and for all the links and explanations. I will definitely continue to do my research and now thanks to you in a better informed way and with more faith that I made the right choice to stay away from all those meds. I wish you the best of luck and happy new year

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