Hesitant to begin drug treatment for my osteoporosis

Posted by artistel81 @artistel81, May 14, 2024

Hello! My first post here as a new member. I am an active 69 year old female who was diagnosed many years ago with osteopenia but now have osteoporosis. When diagnosed with osteopenia I gave several drugs a try. I had side effects from all the oral choices I took, and when giving myself Forteo shots, broke out in hives all over my body. After that, I decided I would take my chances and go the natural route to keep my bones healthy with diet, consistent exercise and Calcium/Vitamin supplements. Fast forward to present time my last bone density scan was worrisome, (a -4,4 T score in my spine). An endocrinologist strongly suggested treatment, (shots or infusions), but I still fear side effects. I am currently trying to educate and empower myself by researching all options. I am already a bit overwhelmed with so many differing opinions. Drugs or no drugs?! The possible serious side effects of drug treatment still frighten me. Has anyone here diagnosed with more advanced osteoporosis, remained fracture free? Am I at such a high risk that I’m doomed without drug treatment? Thank you in advance for any advice, experiences, etc.

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

Profile picture for joyboudreau @joyboudreau

Another school of thought - more than Oxalates, it is that high percentages of unprotected supplement minerals are crystalizing in the small intestines and becoming useless.

I learned this from a research and development division of a wellness manufacturer who founded a patented fix (two in fact) to the problem that caused up to ten times higher absorption of minerals.

You researchers will like reading about this - search for Oligo Technology introduced in 2008. Trust detail: when they discovered a fix, they threw away over $10 million supplements saying they could not in integrity sell a problem when there was a fix for it. (They had tested 250 name brand supplements and all had this crystalizing problem.)

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i researched a bit and only find the oligo technology available at Melaluca . Is this correct? I have microcalcifications in many areas of body ( ovaries, uterus, likely were in breasts before mastectomy). Very concerned.

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Profile picture for gently @gently

artiste181, welcome, this is a really good site.
I suggest that you try Tymlos and follow windshores as your guide. You can access all of her posts by clicking on a @windyshores.
My short opinionated rundown follows:
There are very few pharmaceutical options divided into drugs that build bone and drugs that preserve old bone.
The anabolics are Tymlos and Forteo, eliminating Forteo because you had side effects.
All of the bisphosphonates work by preserving older bone. I don't like the mechanism of action, so I don't even bother with the side effects. Except with Prolia, which I think the most dangerous of all of the meds, also the easiest to take. Bisphosphonates preserve older bone by preventing remodeling. Prolia has a different mechanism of action. It prevents the bone destroying cells from fully developing collecting what has been called a resevoir or a pool of those cells which mature when you stop the medication. So you have to follow Prolia immediately with medication to prevent extreme damage to your bones.
Then there is Evenity the newest medication (with a scary a black box warning for stroke and heart attack) begins as an anabolic and ends as an antiresorptive.
So I'm for Tymlos. It has an advantage in that if you have side effects you can reduce the dose with the windyshores method or stop taking the drug. It leaves your system withing 24 hours so you aren't trapped with a month of side effects.
Everyone will have a different opinion. I wish you luck with a tough decision.

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I see bone cancer is a risk - I already had breast cancer so doubt Tymlos would be good. My T scores are 3.5 and 4.1.

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Profile picture for allyson13 @allyson13

I see bone cancer is a risk - I already had breast cancer so doubt Tymlos would be good. My T scores are 3.5 and 4.1.

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The bone cancer risk has been disproven, and the FDA removed the black box warning a few years ago.

My T-score is -2.0; probably even better now. When I started this journey two years ago, it was -3.3 or so. Tymlos brought me from -3.0 to -2.0 and counting.

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I am an active 61 year old who has had osteoporosis for at least a decade and I have not taken any medications for my osteoporosis except vitamins. In October I started HRT which my gynecologist prescribed and I have had good results (NTX score from 2 months ago shows bone building and my Dexa scores improved in the spine and femoral neck). My endocrinologist prescribed Fosamax which I haven’t taken yet. My GP recommended not taking Fosamax since I’m having good results with the HRT. Can anyone offer any guidance about taking Fosamax and HRT?

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Profile picture for steinbeck @steinbeck

I am an active 61 year old who has had osteoporosis for at least a decade and I have not taken any medications for my osteoporosis except vitamins. In October I started HRT which my gynecologist prescribed and I have had good results (NTX score from 2 months ago shows bone building and my Dexa scores improved in the spine and femoral neck). My endocrinologist prescribed Fosamax which I haven’t taken yet. My GP recommended not taking Fosamax since I’m having good results with the HRT. Can anyone offer any guidance about taking Fosamax and HRT?

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I was on both Fosamax and HRT for over five years. Never really thought about it or paid any attention to it. I had no issues at all.

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Profile picture for steinbeck @steinbeck

I am an active 61 year old who has had osteoporosis for at least a decade and I have not taken any medications for my osteoporosis except vitamins. In October I started HRT which my gynecologist prescribed and I have had good results (NTX score from 2 months ago shows bone building and my Dexa scores improved in the spine and femoral neck). My endocrinologist prescribed Fosamax which I haven’t taken yet. My GP recommended not taking Fosamax since I’m having good results with the HRT. Can anyone offer any guidance about taking Fosamax and HRT?

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@steinbeck would you be open to sharing your T score and/or FRAX score? If it's not severe osteoporosis, HRT could be a very reasonable choice, in my opinion. NTX is a marker of bone resorption, not formation - so if it becomes sufficiently suppressed, bone loss tends to slow down. This may also lead to some increase in bmd over time. What form and dosage of estradiol are you using?

I'm also on bioidentical HRT since finishing Forteo, a bone-building treatment. My CTX - another bone resorption marker - dropped so much that my endo described it as "minimal bone turnover". So for now, HRT alone seems sufficient to maintain my bone mass, which was confirmed by a DXA scan.

Did your endo recommend adding Fosamax to your HRT regimen? What was your recent NTX reading?

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Profile picture for debbie1956 @debbie1956

The list is quite extensive and depends on individual needs/ symptoms. Keith McCormick doesn't suggest everyone take every supplement he lists. He also goes into the extensive research/studies and why they can help. You can find him online as well. I take Omega 3s, vitamin D, boron, ALA, ALC, NAC, vitamin K2 MK4 and MK7, magnesium, calcium, curcumin, resveratrol, CoQ10, berberine, collagen, and protein powder. Sorry for the long list. I'm not suggesting all these are for everyone.

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@debbie1956 and @lilyrock8, how much K-2 are you taking? I just joined and since December 2024 I have been doing Orange Theory Fitness Classes about 6 days a week and taking supplements, eating more protein and fat and hoping my next bone scan is not severe osteoporosis still. I went from 4'10.5" to 4'10" to now 4'9" tall and about 100 lbs. I wore a back brace for Scoliosis when I was a child. My Scoliosis is starting to get worse again. I am doing well with the strength classes and building my strength back before I stopped working out after the terrible car accident in 2008. I am age 63. I wish I chose a different name but usually it takes so long to find a name no one has so I thought this name would immediately be accepted. I need to get ready for bed, but I found this site looking up how much K-2 should I be taking for Osteoporosis. I am sensitive to medications also. Thank you everyone for participating, sharing and caring. Thank you for letting me be part of your group.

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Profile picture for idlehands @idlehands

mic1953 you might benefit from finding out more about your osteo, esp your T-scores, so you can make informed decisions about treatment. You might be fine without a Rx medication - most of us know lots of people in our age range 😱 who probably have osteoporosis and have not been diagnosed, and who manage fine as long as they don't fall. But you've crossed the line where you can use the excuse that you didn't know. You should look into the Pro's as much as the Con's. IMO. Good luck whichever way you go.

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I am not sure what you mean by saying I have crossed the line where I can use the “excuse” that I didn’t know. I only saw my T Score and nothing else.

As far as pros and cons go, I have looked into both and it seems there are many serious cons and not that many pros.

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Profile picture for oopsiedaisy @oopsiedaisy

I was on both Fosamax and HRT for over five years. Never really thought about it or paid any attention to it. I had no issues at all.

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Thanks for your reply. It’s nice to know that others have dealt with this situation.

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Profile picture for mayblin @mayblin

@steinbeck would you be open to sharing your T score and/or FRAX score? If it's not severe osteoporosis, HRT could be a very reasonable choice, in my opinion. NTX is a marker of bone resorption, not formation - so if it becomes sufficiently suppressed, bone loss tends to slow down. This may also lead to some increase in bmd over time. What form and dosage of estradiol are you using?

I'm also on bioidentical HRT since finishing Forteo, a bone-building treatment. My CTX - another bone resorption marker - dropped so much that my endo described it as "minimal bone turnover". So for now, HRT alone seems sufficient to maintain my bone mass, which was confirmed by a DXA scan.

Did your endo recommend adding Fosamax to your HRT regimen? What was your recent NTX reading?

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Thanks for your reply mayblin.
Here are my T-scores: -2.7 spine, -2.2 hip, -2.6 femoral neck. FRAX was not calculated due to a T- score below -2.5 for the spine or femoral neck.
I had an N-Telopeptide urine test which showed 33 nM BCE/mM Cr.
I am taking Jinteli 1 mg/5mcg.
My endocrinologist wants me to take Fosamax and stay on the Jinteli. My GP, who ordered the urine test, recommended taking only Jinteli.

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