Do I need to start Prolia? or can I wait and follow my lab results to

Posted by pauladiamante @pauladiamante, Aug 15 2:59pm

I am 70-year-old female very healthy 108 lbs. agile, & active (I am in wildlife rehab and fairly strenuous physical work 5 days per week). I was diagnosed with hyperparathyroidism 1 1/2 years ago which caused osteoporosis. I had parathyroidectomy (tumors removed) January 2024, followed by Evenity inj for 1 year. My CTX is 285 and DEXA is pending Aug. 22. My Dr. Rx'd Prolia, but why? I don't want to start any new drugs unless I have to! What should I do?

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

Profile picture for mayblin @mayblin

I resonated with oopsiedaisy's opinion. If there is no follow-up therapy after Evenity, future bone turnover will rely on your body's natural balance between resorption and formation.

With the secondary cause of bone loss addressed (removal of the parathyroid tumor, and assuming your bone remodeling has reset to pre-hyperparathyroidism levels), the primary cause, estrogen deficiency, still remains.

Many postmenopausal women in their 70s may see a natural slowing of bone resorption, which might be helpful. However, a gradual decline in bone formation is almost inevitable with age unfortunately. The balance between these two opposing processes may not always support a healthy bone turnover or maintenance.

Personally, i'd lean toward a short-term course of an antiresorptive, with close monitoring of bone turnover markers as you transition off medication if you could. Even a low dose of estrogen could be considered (full disclosure - I'm a bit biased, as I'm currently using it myself after Forteo). Unlike bisphosphonates though, it does need to be taken continuously to maintain its benefits.

Please keep us posted on your journey if you can. Wishing you continued good health and all the best on your bone health journey.

Jump to this post

Thanks so much. Just One statement to clarify. The PRIMARY cause of my bone loss was definitely the hyperparathyrpid syndrome.
In fact due to the parathyroid hormone so much calcium was actively removed from my bones that I have enormous calcium stones from my body trying so hard to keep my blood calcium levels in a normal range. And get rid of the high calcium levels in my blood by filtering it out in urine.. The way my condiction was discovered was through unbelievably high blood calcium levels from calcium being literally sucked from my bones.
If I ha e post menopausal osteoporosis it has yet to be discovered.
You are right regarding estrogen and bone health.
We wouldn't simply put every post menopausal female on medication.
I might be a good healthy post menopausal woman that doesn't need medication. I mean... it IS possible.

REPLY
Profile picture for pauladiamante @pauladiamante

Thanks so much. Just One statement to clarify. The PRIMARY cause of my bone loss was definitely the hyperparathyrpid syndrome.
In fact due to the parathyroid hormone so much calcium was actively removed from my bones that I have enormous calcium stones from my body trying so hard to keep my blood calcium levels in a normal range. And get rid of the high calcium levels in my blood by filtering it out in urine.. The way my condiction was discovered was through unbelievably high blood calcium levels from calcium being literally sucked from my bones.
If I ha e post menopausal osteoporosis it has yet to be discovered.
You are right regarding estrogen and bone health.
We wouldn't simply put every post menopausal female on medication.
I might be a good healthy post menopausal woman that doesn't need medication. I mean... it IS possible.

Jump to this post

Haha, fair point!

Just to clarify, I was going by the usual classification where estrgen deficiency is considered the primary cause of osteoporosis (or osteopenia, bone loss in general), and everything else (like disease states or medication-induced causes) falls under secondary causes.

So when I said "secondary cause of your bone loss", I actually meant your main or 'primary' cause - hyperparathyroidism! Gotta love how definition can shift depending on perspective 🙂

REPLY
Profile picture for shelldct1 @shelldct1

Please listen to this podcast where Dr Keith McCormick (author of Great Bones, an “encyclopedia” about Osteoporosis) talks about all the OP medicines.


Hope this helps!!

Jump to this post

@gently: Hi! Thank you for your bone recommendations! I listened to Dr Great Bones the chiropractor’s audio twice. I took some notes to research later, but he did not instill my faith in his abilities to decipher “the way” for the majority of us. I’m 80 yrs old & only hope to not fracture a bone due to osteoporosis disease before I die. If I were 40 or even 50 I would reconstruct my life choices around building strong bones; but I am just a tired ‘ol lady trying to figure out if these uncertain medications would do more good than bad to me.
Thanks to you I have learned more “Osteoporosis Lingo” so I will be able to discuss the subject with my docs. Thanks!
Best of health… dbamos
(I hesitated saying, “Break a Leg”)

REPLY

I share your sense of Dr. McCormick.
I don't trust even practicing chiropractors who sell supplements.
You don't seem tired and 'ol.
Yeah, we try to make a decision without knowing consequence. But, knowing that there will be consequence and it could be an adverse reaction to a medication--mild or intense.
How would you reconstruct your bones at 40 or 50. We don't have much of a chance with the gradual and then sudden loss of estrogen, even doing everything right.
I knew at fifty that I would have osteoporosis. And I was fairly certain that I would be taking the miracle that was approved that year. Twenty plus years later I'm taking Forteo without side effects. I wasn't clever, but lucky.
Bless your bones.

REPLY
Profile picture for pauladiamante @pauladiamante

@gently Thank you. I am still confused about the need for continued medication. This is not postmenopausal osteoporosis. It is due to hyperparathyroid syndrome, and the tumors have been removed, therefor the root cause of bone degeneration should be eliminated. At least that is what I think.
My Dexa is in 5 days. Aug. 22. Not too far.
If it is indeed justifiable for a reason that I am not clear about, to take another medication what do you think is better?
Thanks for the info on AMGEN products. I didn't know that. I completely get it about prolia. I really don't want to go down that road.

Jump to this post

Can you safely eliminate loss of bone due to menopause? That is the most common cause of osteoporosis for women.

REPLY
Profile picture for dbamos1945 @dbamos1945

@gently: Hi! Thank you for your bone recommendations! I listened to Dr Great Bones the chiropractor’s audio twice. I took some notes to research later, but he did not instill my faith in his abilities to decipher “the way” for the majority of us. I’m 80 yrs old & only hope to not fracture a bone due to osteoporosis disease before I die. If I were 40 or even 50 I would reconstruct my life choices around building strong bones; but I am just a tired ‘ol lady trying to figure out if these uncertain medications would do more good than bad to me.
Thanks to you I have learned more “Osteoporosis Lingo” so I will be able to discuss the subject with my docs. Thanks!
Best of health… dbamos
(I hesitated saying, “Break a Leg”)

Jump to this post

Your last statement brought a chuckle 🤭 LOL!!!
I am glad you listened to the podcast. If nothing else, at least you learned some new information. What I do like about Dr McCormick is that he has done so much research! And unlike some of the others out there (Kevin Ellis, the bone coach, and Dr Doug Lucas) he is not pushing his products during these podcasts. Also, his social media presence, other than when he is being interviewed by others, is minimal. My Instagram feed is constantly being bombarded by ads from the other two. So if there is someone I would trust, it would be Dr McCormick’s advice. I know he didn’t address something like your concerns, but hopefully he gave you enough information.
Please keep us updated on what you decide to do. Good luck!!

REPLY
Profile picture for gravity3 @gravity3

Can you safely eliminate loss of bone due to menopause? That is the most common cause of osteoporosis for women.

Jump to this post

Yes, I get what you are saying, and No, I cannot eliminate that I will have additional and/or future bone loss due to decreased estrogen levels and the effects of age. But I am very certain of the reason for my bone loss that was diagnosed and surgically removed; 2 massive tumors and Parathyroid hormone levels off the charts, with skyrocketing blood calcium levels leached from my bones and deposited in my kidneys. A very textbook scenario. Although I cannot say that I would not have post-menopausal bone loss, I wouldn't safely recommend that all postmenopausal women begin treatment.

REPLY
Profile picture for pauladiamante @pauladiamante

Yes, I get what you are saying, and No, I cannot eliminate that I will have additional and/or future bone loss due to decreased estrogen levels and the effects of age. But I am very certain of the reason for my bone loss that was diagnosed and surgically removed; 2 massive tumors and Parathyroid hormone levels off the charts, with skyrocketing blood calcium levels leached from my bones and deposited in my kidneys. A very textbook scenario. Although I cannot say that I would not have post-menopausal bone loss, I wouldn't safely recommend that all postmenopausal women begin treatment.

Jump to this post

Nor would I.

REPLY

My endocrinologists was ordering bone density tests one year when my numbers were -2.1 and -2.2 she recommended Prolia. I took it for several years. In 2022 I had occasional burning and tingling in my toes September of 22 the Burning and tingling got worse after my Prolia shot. In spring of 2024 I asked my PCP if I could quit having the shots due to the fact I thought it made it the neuropathy worse and he approved. We moved out of state in July and I saw an orthopedic for spondolethis this Dr. worked at a top 10 orthopedic facility in the nation and Number 1 in Ohio. She did bone density test and I was -2.1 and referred me to a rheumatologist at the Cleveland Clinic. That Dr. told me I never should have been on Prolia unless my scan was -2.5, but since I had been on it and discontinued it you will lose more bone density. She recommended Reclast Infusion and felt that I have a good possibility I will be in the range of not needing to have anything to take with only 1 treatment. I had the reclast injection in February and I didn’t have any side effects and my Neuropathy did not get any worse.

REPLY

Dear wonderful discussion group participants. I am writing here to give a final result to my own question. My DEXA results are back, and my spine is completely out of Osteoporosis, and hips and pelvis are very close! The improvement is absolutely 100% exciting and amazing. I cried with relief.
Also, Thanks to the clues from you all, I found a Physician that has Parathyroid & Bone Disorders as a specialty. She is a couple hours drive from me, but she will see me in early Dec. Until then, I am not starting Prolia and will continue to take my Ca, D3, K2, work out till I'm breathless 3 to 5 days a week in my weight vest .... and live in a sea of grace.
This is a pic of my brother and me after my last Evenity inj earlier this year on a celebratory 3 day section hike of the Appalachian Trail.

REPLY
Please sign in or register to post a reply.