Am I the only one that’s in denial?

Posted by indenial @indenial, Sep 18 10:26am

Is there anyone else in this group that refuses to start treatment? I’m 62 years old with a T score of -3.8 in hips and spine. Even though I’ve just suffered a painful compression fracture, the alternative (Meds) still scares me to death. I feel like I’m too young to start treatments that will cause rapid bone loss the minute you stop medication. I realize you go on to a second medication to lock in the gains, but then what?? At 62 years old, the treatment sounds more terrifying than the disease itself. I’m doing all the natural things in the meantime and awaiting a new DEXA scan. I did have a slight improvement on my last one, this was mainly from collagen peptides, calcium, D3 with K2 and walking on treadmill. I know I should have added light weightlifting to the regimen, but hindsight is 2020. When I am fully healed, I plan to go that route as well. I’ve read all the pros and cons to every single medication on the market and the cons, for me, seem to outweigh the benefits. Am I alone in this thought process?

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Profile picture for indenial @indenial

@gently
Can I ask what makes Forteo superior over Tymlos? Or is it just personal preference? I think it’s the fear of the unknown for me. Like not knowing what will happen at the seven year mark and if I will regret treatment if I end up worse off. I’m hoping that someone will comment about quality of life at the seven year mark and beyond. I think this would make me feel more at ease.

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@indenial technically tymlos gives better outcomes or so they say. Often times it comes down to which one you can tolerate and is covered by your insurance.

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No. Meds make your bones denser, but degrades the quality. Get on HRT and hire a trainer. Heavy lift and eat protein.

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Profile picture for indenial @indenial

@boneoptimist
Thank you! Those are all very good points. Especially about the insurance. I hadn’t given that much thought. I would qualify for zero co-pay through their Co-pay Assistance program. I had checked into everything, had my Dr send the prescription to them… Then I got cold feet after more research. A few years ago, I had a wrist fracture and now suffering with a T12 compression fracture, so I completely get where you’re coming from. It is very scary. Not to mention painful. Yet I am still deathly afraid of ending up worse off after the Tymlos/ Reclast gains wear off. Rapid bone loss is what scares me more than anything.

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@indenial , I might be in a second denial that I will be able to keep my gains more organically, with minimal or no follow up drugs. I think this because I was able to increase my bone density and improve my T scores on my own over 20 months before I even started Tymlos (about 11% increase in BMD in total spine). I'm very hopeful that I will continue to improve slowly, post Tymlos, if I keep up or increase everything I'm doing. I have 13 months left on Tymlos, so I still have time. And everything is dependent on me being able to keep up with my vigorous exercise routine -a bad injury could derail everything. I'm hoping more research might come out to show if exercise and nutrition interventions after stopping Tymlos can keep the gains. It could give us more information (and hope). Fingers crossed!
Keep up the fight Bone Warrior!

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I'm in agreement with the tough love comments. Your T-score is pretty bad and you've already fractured so you are more likely to fracture again and you'll likely continue to lose bone density over the years. It's just the way nature works. I've posted my story before so I'll try and be brief (but it's a long story, so...). I was diagnosed at 57 with a T-score of -2.8. Absolutely shocked as I was very active (dance class, weightlifting, hiking) and had an excellent diet. Was afraid of meds and thought I could improve on my own by increasing exercise, higher weightlifting and watching my diet more closely (I always ate all whole foods but started to track my nutrition more closely). I told my doctor that I wanted two years and I would prove to her that it could be done. In that 2 years, I went from -2.8 to -3.2. At that point, I knew I had to embrace a pharmaceutical option. I chose Forteo because I felt it was the most "natural" as a parathyroid hormone, something meant to be in the body. I had no side effects. Actually, I had one. An incredible sense of relief that I was building bone and safeguarding my skeleton. That was worth everything. I had gains the first year and plateaued the second and ultimately concluded my treatment at -2.9. Had I gone on Forteo at the onset of my diagnosis, I would be in much better shape. When I finished treatment, I decided to go on HRT to maintain my gains. I was 62 at the time. That was 8 years ago and my density has been fairly stable. Recently, my CTX shot up and my estrogen level was low which really concerns me. I'm thinking of going on Forteo once again. The worry that my bones may be diminishing again is frightening. I'd rather have the peace of mind knowing that I'm building bone and creating stability to move forward into my 70s with the strongest body I can have.

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Profile picture for indenial @indenial

@boneoptimist
Thank you! Those are all very good points. Especially about the insurance. I hadn’t given that much thought. I would qualify for zero co-pay through their Co-pay Assistance program. I had checked into everything, had my Dr send the prescription to them… Then I got cold feet after more research. A few years ago, I had a wrist fracture and now suffering with a T12 compression fracture, so I completely get where you’re coming from. It is very scary. Not to mention painful. Yet I am still deathly afraid of ending up worse off after the Tymlos/ Reclast gains wear off. Rapid bone loss is what scares me more than anything.

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@indenial , I also saw this study about various drugs and the loss rate after stopping them. Unfortunately, Tymlos (abaloparatide) is not included. I worry about bone loss and brittle bones from bisphosphonates. My mom did Fosamax, and her jaw was like Swiss cheese. I'm not looking forward to deciding what's after Tymlos if I can't keep my BMD up after ending it.
Here's the study:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8519894/
Hope it's helpful!

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You are definitely not alone. I am struggling to justify taking the meds. I have tried the bisphosphonates but they gave me nausea and vomiting. I have multiple comorbidities which rule out a number of meds. I can't even take collagen because I have Dupuytren's and can't take a chance on making it worse. I need to make a decision by the beginning of December and it seems the more I read the less I want to take a chance on these meds and I need to prepare for a discussion with my endo. None of this is easy.

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Profile picture for boneoptimist @boneoptimist

@indenial , I also saw this study about various drugs and the loss rate after stopping them. Unfortunately, Tymlos (abaloparatide) is not included. I worry about bone loss and brittle bones from bisphosphonates. My mom did Fosamax, and her jaw was like Swiss cheese. I'm not looking forward to deciding what's after Tymlos if I can't keep my BMD up after ending it.
Here's the study:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8519894/
Hope it's helpful!

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@boneoptimist If you're taking Tymlos, you're not getting brittle bones. That was a problem when Fosamax was the only medication on the market: it didn't really build good bone density. Tymlos does. Afterwards, Fosamax helps preserve those gains. And, you don't have to take it forever. It's recommended to take drug holidays every so often, where you take a couple of years off (Fosamax stays in the bones for a long time, so a holiday is OK.)

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hrt and blood clot risk
The relationship between hormone replacement therapy (HRT) and blood clot risk depends heavily on how the hormones are administered and the specific formulations used. While certain types of HRT carry an elevated risk of venous thromboembolism (VTE), others do not appear to increase risk at all.

nhs.uk
+2
The Route of Administration Matters
The method used to deliver estrogen into the body is the single most critical factor determining blood clot risk:

Professor Andreas Obermair
+1
Oral HRT (Tablets/Pills): Taking estrogen orally increases the risk of blood clots. When an estrogen pill is swallowed, it passes directly through the digestive system and enters the liver (known as the "first-pass effect"). The liver responds to high concentrations of oral estrogen by increasing the production of clotting factors and proteins, making the blood more prone to clotting.

National Institutes of Health (NIH) | (.gov)
+4
Transdermal HRT (Patches, Gels, and Sprays): Estrogen delivered through the skin does not increase the risk of blood clots. Because transdermal estrogen is absorbed directly into the bloodstream through the skin, it bypasses the liver entirely. Consequently, it does not alter the body's clotting factors.

The Menopause Charity
+5
Vaginal Estrogen (Creams, Rings, or Pessaries): Low-dose localized vaginal estrogen is used for vaginal dryness and carries no systemic blood clot risk because very little enters the general bloodstream.

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Profile picture for njx58 @njx58

If you are really lucky, you won't fall and break a hip.

If you are less lucky, you'll break a hip and get a hip replacement. It's not a fun process.

If you are old enough and unlucky enough, you'll fracture a spine and be crippled. Or, you'll break a hip and die in a nursing home. That happens all the time. A broken hip for an elderly person is usually a death sentence.

Don't stick your head in the sand. -3.8 is a really bad score. Don't be scared of all the talk of side effects. Here's what I am doing. I took Tymlos for two years and made great gains. I don't even have osteoporosis anymore. I'm now taking Fosamax. The plan is to take it for a while (as yet undetermined), then take a "drug holiday." Then, we'll play it by ear. BYW, I agree that meds like Prolia and Reclast can be daunting. I'm much more comfortable with the path I've chosen.

P.S. Although it is helpful, all those things you are doing aren't going to make a big dent in a -3.8 score, not by a long shot. Calcium + vitamins + walking will not make a big difference, I promise you.

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@njx58
Did you spend your life savings on the Tymlos?

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Profile picture for rsdcellist @llander1966

You are definitely not alone. I am struggling to justify taking the meds. I have tried the bisphosphonates but they gave me nausea and vomiting. I have multiple comorbidities which rule out a number of meds. I can't even take collagen because I have Dupuytren's and can't take a chance on making it worse. I need to make a decision by the beginning of December and it seems the more I read the less I want to take a chance on these meds and I need to prepare for a discussion with my endo. None of this is easy.

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@llander1966
My story. Too many other things wrong with me and cannot imagine something else and the anxiety about being crippled doesn’t help.

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