Hesitant to begin drug treatment for my osteoporosis

Hi, Ripley,

It was my endocrinologist who recommended I not use any of the drugs that are parathyroid hormone based, e.g., Forteo and Tymlos. "Abaloparatide (Tymlos) is a daily injectable parathyroid hormone..." (from the AAFP website). She didn't want the medication to essentially confuse my parathyroid. I think her thinking is that if the parathyroid senses parathyroid hormone in the body, it will stop doing its work (that's my interpretation of what she said - it's been about six months since we discussed it, so my memory isn't necessarily precise).

Have you discussed using Evenity with your doctor? It might be a better choice in your situation, as the Tymlos website itself says you should talk with your doctor if your calcium levels are too high. If you do go forward with it, make sure you are aware of the side effects associated with the high calcium level, so you can alert your doctor if you experience them.

I spoke with my cardiologist regarding Evenity as there are potential heart/stroke related side effects associated with it (very small risk). My coronary calcium score is very high, which is why we had the concern. It's never a bad idea to make sure that all of your doctors know that you're planning to start one of these drugs.

By the way, my doctor plans for me to start Reclast as soon as I stop Evenity. If I don't, then whatever gains I get from the medication will be lost. Like most folks here, I feel that I am between a rock and a hard place. I've never broken a bone in my life (knock on wood), and I'm still relatively young (66), so having to take such serious medications to protect my back is a tough pill to swallow.

Good luck with your journey!

Good evening, @ripley; nice to hear from you. Let me see if I can remember the answers to your questions. I am struggling a bit with MCI these days. I used the online appointment link on the home page for Connect. I received a phone response from my application within three days, and the process began. Essentially, I was asking for a consultation about my osteoporosis medication. My application was accompanied by support from my PCP at another institution. I have been with her for about ten years now, and we have developed a meaningful and helpful relationship based on trust, extensive support, and personal regard.

So now, I see a Mayo Clinic medical provider in endocrinology for Osteoporosis and bone health. I have also been accepted for radiculopathy and small fiber neuropathy care. So far, everything that is appropriate goes back and forth between the two institutions through the patient portals with similar software. We also use video connections when reviewing test analyses.

Now ....for the Tymlos and Fosamax experience. Initially, I was directed to use Bonniva and found it problematic regarding jaw pain and discomfort. I pushed for a change to Tymlos, which was much better to manage and had no side effects. After 24 months, I was told that Prolia was to be my next adventure. It was actually a hefty challenge with multiple side effects. That was when I requested a consultation with the Mayo Clinic, and this helpful relationship of acceptance and cooperation evolved. It will be two years in July 2024, and I have just made my DEXAScan appointment and a follow-up virtual meeting with my endocrinologist.

I hope that helps, my dear. If you have other questions, please don't hesitate to send them along.

May you be safe, protected, and free from inner and outer harm.
Chris

Good evening, @ripley; nice to hear from you. Let me see if I can remember the answers to your questions. I am struggling a bit with MCI these days. I used the online appointment link on the home page for Connect. I received a phone response from my application within three days, and the process began. Essentially, I was asking for a consultation about my osteoporosis medication. My application was accompanied by support from my PCP at another institution. I have been with her for about ten years now, and we have developed a meaningful and helpful relationship based on trust, extensive support, and personal regard.

So now, I see a Mayo Clinic medical provider in endocrinology for Osteoporosis and bone health. I have also been accepted for radiculopathy and small fiber neuropathy care. So far, everything that is appropriate goes back and forth between the two institutions through the patient portals with similar software. We also use video connections when reviewing test analyses.

Now ....for the Tymlos and Fosamax experience. Initially, I was directed to use Bonniva and found it problematic regarding jaw pain and discomfort. I pushed for a change to Tymlos, which was much better to manage and had no side effects. After 24 months, I was told that Prolia was to be my next adventure. It was actually a hefty challenge with multiple side effects. That was when I requested a consultation with the Mayo Clinic, and this helpful relationship of acceptance and cooperation evolved. It will be two years in July 2024, and I have just made my DEXAScan appointment and a follow-up virtual meeting with my endocrinologist.

I hope that helps, my dear. If you have other questions, please don't hesitate to send them along.

May you be safe, protected, and free from inner and outer harm.
Chris

You said your application to the Mayo "was accompanied by support from my PCP at another institution". So did your PCP, in a sense, refer you to the Mayo? Or did you just send a request by yourself without any info or back up from your PCP?

It sounds like you have a very wise Dr. I will discuss the parathyroid issues with my Dr. How long have you been on Evenity and what is your experience with it, such as side effects etc? Is sounds like you will take Evenity for 6 months, is that correct? Regarding Reclast after Evenity, did you and your Dr ever discuss using Fosamax instead of Reclast? I am concerned about the side effects of Reclast and would prefer to take Fosamax since it's a weekly pill vs a yearly injection. I feel like you, with no options that are good. Thank you so much for all the information.

@risagee I did 5 years letrozole and lost bone density. I also had osteoporosis at the start but my doctor was afraid to prescribe Reclast due to my afib and kidneys.

Most cancer patients on aromatase inhibitors do Reclast (Or Zometa, which is the same drug with different dosing). It may have some protective effect with bone metastases as well as increasing bone density.

If you were not on letrozole I would ask why they are not putting you on a bone builder like Tymlos, Forteo or Evenity. I did two years of Tymlos when I finished.

Perhaps doctors are afraid a bone builder will encourage cancer spread-? The bone cancer black box warning was lifted and not a single patient has gotten bone cancer from these osteoporosis meds.

I am curious. Your DEXA score would justify a bone builder vs Reclast but it seems Reclast is still being given to patients on AI's. I would be curious to know what the doctor says if you ask about Forteo, Tymlos or Evenity in your situation. Let us know!

Who did you see @ Mayo Rochester? I’m struggling also with severe osteoporosis. Evinity has been recommended, but I am not wanting to take it.

artiste181,
Yes!!!!!!!!!!!! My osteoporosis is worse than yours!!!!!!!!!!!I have the worse case of osteoporosis that my doctor has ever seen!!!! And I was just diagnosed with it, and that is how it was presented to me!!!!! Talk about shock and devastation...My spine T-score is -5.6, so you should feel better about your condition. The thing is my doctor is not hearing me when I say I can't take prescription drugs and my system is very sensitive and I am very petite.....I have been sent to the ER many times for far less dangerous drugs than those for osteoporosis. I am 73 years old but have never had a fracture of any kind.... so should I worry since I am going against medical advice??? Going with the recommended pharmaceuticals for osteoporosis would be suicide for me especially in light of the serious possible, but very likely for me, side effects? I have no choice but, to go the natural therapy way to deal with it. On another note, I question the DEXA scan reading as there have been questions related to DEXA scan and petite woman. As we have less bone in the first place but are my bones are compared to someone who weighs and is much bigger than us petites?

Good luck with which way you decide to go with treatment!