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.

@kathleen1314

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.

Jump to this post

Thx again Kathleen, for the great info and resources. Hope you are doing well. Blessings, Sunnyflower

REPLY

New here. Has anyone heard about the possibility of Tymlos losing their Black Box warning?

REPLY
@panda17

New here. Has anyone heard about the possibility of Tymlos losing their Black Box warning?

Jump to this post

@panda17 Welcome to Mayo Clinic Connect, a place to give and get support. May I ask what brings you to Connect. Have you been diagnosed with osteoporosis?

REPLY
@erikas

@panda17 Welcome to Mayo Clinic Connect, a place to give and get support. May I ask what brings you to Connect. Have you been diagnosed with osteoporosis?

Jump to this post

YES

REPLY

Hello heyhey, have you looked into using a non-prescription treatment? Don't be pushed into believing that pharmaceuticals are the only effective treatment! I too have osteoporosis and osteopenia. I've been taking AlgaeCal and Strontium with no side effects for almost 2 years. ( https://www.algaecal.com/ ) There is an AlgaeCal Community on Facebook where users share their results, and you can get answers to any questions. I'm due for my 2 year Dexa scan this summer, and am expecting to impress my doctor with the results.
I took Boniva and Actonel for a number of years, before my research alerted me to the long term side effects and overall poor results. During that time there was minor improvement in my Dexa scans, which reversed when I had to go off them.

REPLY
@criss

Hello heyhey, have you looked into using a non-prescription treatment? Don't be pushed into believing that pharmaceuticals are the only effective treatment! I too have osteoporosis and osteopenia. I've been taking AlgaeCal and Strontium with no side effects for almost 2 years. ( https://www.algaecal.com/ ) There is an AlgaeCal Community on Facebook where users share their results, and you can get answers to any questions. I'm due for my 2 year Dexa scan this summer, and am expecting to impress my doctor with the results.
I took Boniva and Actonel for a number of years, before my research alerted me to the long term side effects and overall poor results. During that time there was minor improvement in my Dexa scans, which reversed when I had to go off them.

Jump to this post

Hello @criss, I would love to hear how your next scan goes. Warmest wishes for the very best, Sunnyflower 🙏😊

REPLY
@erikas

@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?

Jump to this post

I’m joining this forum because I have similar questions. My last bone density test has indicated moderate osteoporosis in my lumbar spine. My doctor wants me to start on a medication immediately but has agreed to refer me to an osteoporosis clinic.

My concern is whether one can start a medication and then stop/change after consulting with experts. It doesn’t seem like a smart way to proceed. I was on fosomax for 5 years in my 50’s. My doctor is really pushing for me to start Prolia.

Can anyone share their experience with Prolia or other drugs and/or risks of starting and stopping these drugs?

REPLY
@kathyhg

I’m joining this forum because I have similar questions. My last bone density test has indicated moderate osteoporosis in my lumbar spine. My doctor wants me to start on a medication immediately but has agreed to refer me to an osteoporosis clinic.

My concern is whether one can start a medication and then stop/change after consulting with experts. It doesn’t seem like a smart way to proceed. I was on fosomax for 5 years in my 50’s. My doctor is really pushing for me to start Prolia.

Can anyone share their experience with Prolia or other drugs and/or risks of starting and stopping these drugs?

Jump to this post

@kathyhg I am getting my fifth Prolia injection next week. I am 66. I was diagnosed with osteoporosis in my late 50's and choose to not treat it until the risks of continuing done this path outweighed the benefits of medication.
You cannot just stop taking Prolia. A decision to stop requires a backup drug plan in place. For example Reclast (in my case because I have gastrointestinal problems and oral bisphosphonates are not advised). Stopping Prolia abruptly puts patients at risk for vertebral fractures.
My bone density had improved in both the spine and the hip.
Prior to starting medication I was lucky to not experience any fractures and no fractures to date.
The side effect I noticed from the first few injections was a lingering fatigue.
I have noticed my IBS-C is worse since being on Prolia, however, the endocrinologist thinks it is not the Prolia. Hard to know as I went from never taking any medications to now being on three drugs all around the same time.
I do like the ease of this method of treatment. (One injection every six months).

REPLY

Are you still having the fatigue? Any pain? Once a month I get 2 shots of Evenity for osteoporosis. I don't know what I will take when my 12 months of Evenity is finished. I may have to take oral bisphosphonates but I would prefer, if advisable, to take something like Prolia with injections every 6 months. I have a few months before I finish the Evenity.

REPLY
@catharbert

Are you still having the fatigue? Any pain? Once a month I get 2 shots of Evenity for osteoporosis. I don't know what I will take when my 12 months of Evenity is finished. I may have to take oral bisphosphonates but I would prefer, if advisable, to take something like Prolia with injections every 6 months. I have a few months before I finish the Evenity.

Jump to this post

@catharbert I had no fatigue with the fourth injection in July. Cant remember with the third. For the first two it was a lingering fatigue for the first three weeks of the six month period. Re pain. Hard to know. I have lots of arthritis which I had pre Prolia.
I think each of us will react (or not react) differently to any of the osteoporosis meds.

REPLY
@kathyhg

I’m joining this forum because I have similar questions. My last bone density test has indicated moderate osteoporosis in my lumbar spine. My doctor wants me to start on a medication immediately but has agreed to refer me to an osteoporosis clinic.

My concern is whether one can start a medication and then stop/change after consulting with experts. It doesn’t seem like a smart way to proceed. I was on fosomax for 5 years in my 50’s. My doctor is really pushing for me to start Prolia.

Can anyone share their experience with Prolia or other drugs and/or risks of starting and stopping these drugs?

Jump to this post

I took Fosamax on and off for over five years. Due to side-effects from Fosamax and research reports that were very concerning about the other osteoporosis drugs that required me to stay on them long-term, I chose to stay off all drugs. It has been eight years now, and I'm doing great! I eat yogurt, take vitamin D3, a probiotic, and exercise every day. If you do decide to take osteoporosis meds, be sure and research them as some types you'll need to commit to staying on long-term. We are all not the same and what is the best course of treatment or non-treatment is maybe not the best for someone else with osteoporosis. My best wishes to you.

REPLY
Please sign in or register to post a reply.