Hesitant to begin drug treatment for my osteoporosis

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

@windyshores I’m new to this chat but am so appreciative of your knowledge and generous advice to us all!
I may have missed your mention of it in a previous posting, but what’s your take on Reclast? I’ve had lumbar spine -3.5 for several years now and just saw a highly-respected bone specialist for the first time — she recommended a half-dose infusion of Reclast once a year (I’m 62). I’m already experiencing difficult side effects from 6 months on letrozole (breast cancer diagnosis last summer) and am quite frankly terrified of feeling even worse, so I’ve been putting off trying Reclast. Your description of vertebral fracture is sobering, however, as I live a fairly active life in NYC where walking a lot and carrying groceries etc is a daily necessity. I’d be grateful for any thoughts you might share on Reclast. Thank you, in advance!!! I hope you’re enjoying a pleasant weekend

Lola,

I think you expressed how most of us feel: "I'm frozen with fear....either way scared to take the drugs and also scared not to take drugs" My spine was at -3.8 before my parathyroidectomy, and -3.4 one year after the surgery. That is the best recovery I can hope for from the damage of long-term malfunctioning parathyroids (which probably caused the severe osteoporosis in the first place). My endocrinologist tolerated my medication aversion for a couple of years, but then she got tough with me, recommending Evenity. I, too, was terrified by the black box warning regarding stroke or heart attack, so I pushed back. I set to work educating myself, which led me to this forum, which led me to Keith McCormick's book, Great Bones. I also made an appointment with a doctor who had made osteoporosis his specialty and set up a special osteoporosis clinic, and who is now a professor at UCI teaching doctors about this topic. It took me months to get in with him, but it was so worth it. He listened, answered my questions, and when I came up with one that stumped him, he did the research and got back to me on it two days later. The question was about my coronary calcium score, which is very high, and my concern that Evenity + coronary calcium would mean disaster. After doing research, he told me that the studies that revealed the heart concerns with Evenity were not particularly strong, but that there was good research regarding the relationship between Evenity and coronary calcium. He said that in my case, he would not recommend Evenity. I have to admit that as resistant as I have been, I was quite disappointed that I wouldn't get to receive the benefit of this amazing drug.

I consulted with my cardiologist and then thought long and hard and decided that I would take the risk and start the Evenity and give it three or four months. The reason I conceded is the fear of a fracture. The specialist told me that 1/3 of people who have a spinal fracture DIE WITHIN ONE YEAR! Yikes! Would someone please tell me what's behind Door #3?! When I told my endo that I was conceding, she suggested that six months would be better. We'll see how it goes. I have my first infusion in two weeks.

One more thing: one of the most important topics often not discussed with regard to these drugs is the relationship between medications like Forteo and Tymlos and your parathyroids. I have only one parathyroid left, and if it stops working, I will be in deep juju. For this reason, my endo will not let me use those drugs. The risk of them damaging that last parathyroid is too great.

I wish you all the best. It is a tough decision for all of us, but sadly, one that only we can make for ourselves. Just do the best you can to educate yourself.

@wilkenj gee I would love to know the basis for that one year survival rate for 1/3 of people with a spinal fracture, since I have 7!

@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!

I also am of small stature and have many allergies to medications. That’s why my reluctance to go on Evenity.

@judy58 you could try Tymlos. The dose is adjustable, and the drug leaves your body in hours. The half life is just one hour. That said, many seem to do well on Evenity too but the med stays in your body for something like 65 days (half life 12.5 days after 3 months).

How did you find out about Forteo & Tymlos and the parathyroid glands? Are those drugs known for damaging those glands? I also only have one parathyroid gland left because the others were removed during two thyroid surgeries. At my last thyroid surgery in 2023, the surgeon had to remove one of them and could only find one gland remaining so assumes two were removed during my first thyroid surgery. Anyway, at first my endo was hesitant to prescribe Forteo or Tymlos because my blood calcium is in the high-normal range, but said we could try them if we keep an eye on my blood calcium. He didn't mention anything about those two drugs possibly damaging the parathyroid gland I have left. I am still trying to decide what drugs to take. It's difficult because I couldn't get a follow-up appt with my endo until Sept. My lumbar spine is at -3.9. My endo recommends Reclast but the side effects of acute phase reactions scare me.

Regarding Evenity, would you suggest a consult with a cardiologist before starting that drug? I had a coronary calcium test a few years ago and my scores were good.

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!