What would you do? Medication.

Posted by babs10 @babs10, Feb 12, 2024

Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.

I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.

My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”

Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?

I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.

I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.

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

Profile picture for drsuefowler @drsuefowler

@gravity3, are you on any bone medications? I just started taking bioidentical estrogen with 40mcg Tymlos. Dizzy so far.

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I have a pellet with estradiol and testosterone , progesterone and estradiol vaginal cream.
I am currently on prolia after evenity and before that forteo and alendronate.

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Profile picture for gravity3 @gravity3

I have a pellet with estradiol and testosterone , progesterone and estradiol vaginal cream.
I am currently on prolia after evenity and before that forteo and alendronate.

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@gravity3, I am glad to find someone who is also using hormones and medication at the same time! With which medication, did you start the hormones? Are you happy with your results so far? Do you think the hormones are helping your bones? Do you plan to stay on Prolia? Sorry for so many questions.

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I'm a 3 time cancer survivor with the most recent case being the worst - Stage 4 Esophageal Cancer. 11 hr. surgery, 2 mo. long deep coma following surgery, my death certificate was prepared. Was in multiple re-habs after hospital release and none provided much in the way of exercise if any. Was on a feeding tube. Osteoporosis set in in both legs due to infrequent movement provided while in all rehabs. Never had a problem before with my legs. Have always had strong bone tests. I am not going to even try the Prolia, Reclast or any other osteo. drugs as the reported side effects are awful & will bring back serious side effects that came with that last cancer surgery which I've worked SO very hard to improve as best I can. Can't go back to those days!! Will see a physical therapist soon. Right lung was damaged in the last surgery so have significant breathing problems with slightest exertion. PT will be a challenge.

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Profile picture for drsuefowler @drsuefowler

@gravity3, I am glad to find someone who is also using hormones and medication at the same time! With which medication, did you start the hormones? Are you happy with your results so far? Do you think the hormones are helping your bones? Do you plan to stay on Prolia? Sorry for so many questions.

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I don't plan to stay on prolia. I am hoping to transition to one shot of reclast then back to evenity. I started bhrt while on evenity. I did not start bhrt with the primary goal of helping my bones but hope that it will help to some degree however small. I started bhrt to see if it would help with my no existent libido, brain fog, senile purpura, vaginal dryness and atrophy, energy and retention of muscle mass. I have been delighted with the results.

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I am hoping you all can give me thoughts and experiences on different treatments, as I find myself a bit paralyzed in my decision making. I am a breast cancer patient in remission, I am about to have my second hip replacement and I have had some dental surgery.
I won’t get a DEXA hip score any longer, so primarily interested in the spine. My current spine score is -3.0. I have ruled out Evenity because of cardio side effects and I understand it affects the immune system. The daily injections worry me about infections with artificial joints. I am considering Fosomax and wondered how much people have improved scores with Fosomax. Thanks.

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Profile picture for drummergirl @drummergirl

I am hoping you all can give me thoughts and experiences on different treatments, as I find myself a bit paralyzed in my decision making. I am a breast cancer patient in remission, I am about to have my second hip replacement and I have had some dental surgery.
I won’t get a DEXA hip score any longer, so primarily interested in the spine. My current spine score is -3.0. I have ruled out Evenity because of cardio side effects and I understand it affects the immune system. The daily injections worry me about infections with artificial joints. I am considering Fosomax and wondered how much people have improved scores with Fosomax. Thanks.

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Fosamax is not a great choice for building quality bone. You are better off with an anabolic like Tymlos or Forteo. Yes, they are daily injections, but infection should not be an issue. The needles are disposable, one-time-use only, and are very small.

If you're avoiding Evenity, then I think Tymlos is your best bet for your spine. You can take it for up to two years, and then you'd use Fosamax for a period of time to lock in the gains. This is actually the recommended treatment nowadays: a sequential approach where you start with Evenity/Tymlos/Forteo, and then follow up with a bisphosphonate.

Just to give you one example, my spine T-score went from -3.0 to -2.0 in less than a year on Tymlos. Many people have had similar results. That kind of improvement would get you "out of the woods", so to speak. Add exercise and nutrition at the same time, and odds are that you'd do well.

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Profile picture for njx58 @njx58

Fosamax is not a great choice for building quality bone. You are better off with an anabolic like Tymlos or Forteo. Yes, they are daily injections, but infection should not be an issue. The needles are disposable, one-time-use only, and are very small.

If you're avoiding Evenity, then I think Tymlos is your best bet for your spine. You can take it for up to two years, and then you'd use Fosamax for a period of time to lock in the gains. This is actually the recommended treatment nowadays: a sequential approach where you start with Evenity/Tymlos/Forteo, and then follow up with a bisphosphonate.

Just to give you one example, my spine T-score went from -3.0 to -2.0 in less than a year on Tymlos. Many people have had similar results. That kind of improvement would get you "out of the woods", so to speak. Add exercise and nutrition at the same time, and odds are that you'd do well.

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Thank you- I really appreciate the benefit of your personal experience.

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Profile picture for gravity3 @gravity3

I don't plan to stay on prolia. I am hoping to transition to one shot of reclast then back to evenity. I started bhrt while on evenity. I did not start bhrt with the primary goal of helping my bones but hope that it will help to some degree however small. I started bhrt to see if it would help with my no existent libido, brain fog, senile purpura, vaginal dryness and atrophy, energy and retention of muscle mass. I have been delighted with the results.

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That's wonderful @gravity3! I'm so glad that BHRT is working for you. I am trying to use it for my bones, hoping to get the other positives that you mention in addition. I have had enough time on Forteo and a half dose of Tymlos to be done with these medications. I hope to try the combination of Tymlos and estrogen for a while, then just take BHRT after that. I had a good DEXA in May and am afraid of the side effects of the other antiresorptives. Unfortunately, I am having side effects of dizziness and nausea on just the low estrogen Menostar patch. Did you have any trouble adjusting to BHRT? How are your BMD and bone quality since taking those medications?

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1) When I didn't want to take any more osteoporosis drugs, my primary said I was healthy and had a long time to go and she didn't want me to break something impacting the quality of my life. Elderly do not do well with broken bones. So, she sent me to an ENDOCRINOLOGIST - he put me on Prolia
2) Two years ago, the place doing my bone density tests (machines are sensitive so it is good to stay on same machine) suggested I switch from Prolia to Fosamax since it had been 7 years that I was on Prolia. I asked my Primary and he said he was not qualified to say if a good idea or not and sent me to an Endocrinolgist. I have lung cancer so went to Mayo Endocrinologist who told me to stay on Prolia for another 5 years because Prolia has anti-bone tumor properties. That was a good thing to learn for me!
My recommendation - see the proper Specialist who works with osteoporosis and will consider your whole clinical picture. And when considering medical opinions, look at the background of the doctor - listen to the one with the expertise/experience/research in your specific area of need! Medicine is a big topic, one should not expect them to be experts in everything
Be aware that once a person starts Prolia, one cannot just go off of it. One needs to go to another drug.
ALSO - you mention your Part D plan...Prolia is a Part B drug - administered in your doctor's office (twice a year) and is covered under Medicare Part B not under Part D. It is expensive but I have traditional Medicare with a Medigap plan and never see a bill.

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Profile picture for drsuefowler @drsuefowler

That's wonderful @gravity3! I'm so glad that BHRT is working for you. I am trying to use it for my bones, hoping to get the other positives that you mention in addition. I have had enough time on Forteo and a half dose of Tymlos to be done with these medications. I hope to try the combination of Tymlos and estrogen for a while, then just take BHRT after that. I had a good DEXA in May and am afraid of the side effects of the other antiresorptives. Unfortunately, I am having side effects of dizziness and nausea on just the low estrogen Menostar patch. Did you have any trouble adjusting to BHRT? How are your BMD and bone quality since taking those medications?

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Thanks dr.sue,
Sorry to hear about the nausea and dizziness on Menostar
I like the ease of the estradiol/testosterone pellet. Do you also take testosterone? I had no adjustment period and no noticeable side effects. As far as the op drugs, I have had the best results on evenity and overall stability since beginning op drugs 13 years ago. No fractures. I would love to hear what results you have using bhrt for bone health

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