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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This is my second time with osteoporosis. I did Forteo when it was the new miracle drug with great results and maintained that for about 20 years with exercise, and supplements. Then health issues had me inactive for a long time and here I am on Prolia. I had all the same fears about it but decided I really didn’t want any more fractures. My first shot was 2 days before a Rituxan infusion and that was not a good thing! There was no way to tell what was causing my pain and flu-like symptoms. I separated them and have had only mild flu-like symptoms for a few days with both. As for calcium and vitamin D the latest research shows it does little to nothing for bone density. I didn’t take calcium until I started Prolia because I have sarcoidosis and my calcium stayed pretty high. Now I am taking calcium because of the Prolia. I have taken vitamin D for seems like forever but recently added K2. Honestly I’d rather not take calcium at all because of the cardiovascular risk. While the side effects are scary there is no way to tell who will get them and how severe they will be. My best suggestion is try one that will build bone if you can and leave Prolia as a last resort because once you start it you shouldn’t stop it. Don’t let fear of the side effects stop you.

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Profile picture for nycmusic @nycmusic

You are definitely not alone ! Current OP meds can pose risks, especially for people with multiple conditions, where use of these meds is contra-indicated. It is very frustrating for sure. I am trying whatever I can to help my bones without messing up the health I still have- no easy solution. But most agree that D3 and K2 can help, some calcium (be careful), along with some dietary adjustments appropriate for you— and walking, weight-bearing and resistance exercises do help. There are some excellent benefits from doing PT with a really OP-experienced therapist. Good luck to you and all who are dealing with this.

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@nycmusic
This has been my approach, as well. I have changed my diet to whole foods only, trying to get as much calcium from food as possible, while also supplementing with Calcium, D3, K2/MK7 and Magnesium. I’ve also tried every high dollar supplement, like AlgaeCal and Healthy Bones Co. I try to be as active as I can, as active as my fracture will allow. But plan to add weight-bearing as soon as my fracture is completely healed.
It’s hard to figure out if you’re better off dealing with your poor bone quality or having good bones for a few years and then dealing with consequences of the treatment. This is where I’m so conflicted. I just wish there was more data to go on, especially regarding the after-treatment effects.

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Profile picture for wiseage @wiseage

Keep up what you're doing. I'm avoiding those meds and try to lift weights (working under supervision with a great trainer for seniors), walk, use the elliptical, and eat healthy food. Have you had a REMS scan? It will provide add'l information. I also got on HRT despite being age 67 (yes, I was never told about it when it really would have helped) as it is still good for bones. I have thyroid issues so that is an added problem for me. Keep on!

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@wiseage
I’m in the exact same boat. I’ve asked for referrals to different physicians to see if I could start HRT. This is really what I would have preferred. They have all told me the risks outweigh the benefits, due to blood clots and family history of stroke. I’m a healthy weight, eat very healthy and was fairly active prior to the spinal fracture, but I do have familial cholesterol issues with mild plaque build up in arteries. Other than that and osteoporosis, I have no other medical conditions. At this point, I’m contemplating taking the risk of HRT. Unfortunately, I was never informed by my Dr either, regarding the benefits of HRT and bone health. In addition, my mother always drilled it in my head to just suffer through menopause and avoid HRT, due to cancer risk (based on what her Dr drilled into her head, back in the day before HRT was fully understood). Had I known then what I know now, I would have disregarded that advice. I’m not familiar with the REMS scan, but will definitely look into that. Did you have any concerning effects with HRT? And how long were you on it, or are you still on it?

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Profile picture for indenial @indenial

@nycmusic
This has been my approach, as well. I have changed my diet to whole foods only, trying to get as much calcium from food as possible, while also supplementing with Calcium, D3, K2/MK7 and Magnesium. I’ve also tried every high dollar supplement, like AlgaeCal and Healthy Bones Co. I try to be as active as I can, as active as my fracture will allow. But plan to add weight-bearing as soon as my fracture is completely healed.
It’s hard to figure out if you’re better off dealing with your poor bone quality or having good bones for a few years and then dealing with consequences of the treatment. This is where I’m so conflicted. I just wish there was more data to go on, especially regarding the after-treatment effects.

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@indenial docs who prescribe these strong meds must be better versed about their side effects…and to truly address patients’ concerns and reactions…it’s not just about pushing pills, it’s about treating the whole patient as well. Many of the patients are older, have more reactions to meds, and many also have other conditions that must be taken into account. By not doing this, they risk patients’ health and/or make people reach for some heavily advertised risky supplement ‘’cures’’.

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Profile picture for indenial @indenial

@wiseage
I’m in the exact same boat. I’ve asked for referrals to different physicians to see if I could start HRT. This is really what I would have preferred. They have all told me the risks outweigh the benefits, due to blood clots and family history of stroke. I’m a healthy weight, eat very healthy and was fairly active prior to the spinal fracture, but I do have familial cholesterol issues with mild plaque build up in arteries. Other than that and osteoporosis, I have no other medical conditions. At this point, I’m contemplating taking the risk of HRT. Unfortunately, I was never informed by my Dr either, regarding the benefits of HRT and bone health. In addition, my mother always drilled it in my head to just suffer through menopause and avoid HRT, due to cancer risk (based on what her Dr drilled into her head, back in the day before HRT was fully understood). Had I known then what I know now, I would have disregarded that advice. I’m not familiar with the REMS scan, but will definitely look into that. Did you have any concerning effects with HRT? And how long were you on it, or are you still on it?

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@indenial yes, I’m still interested in HRT or BHRT patches (need some progesterone for balance/safety)…but not in a rush, having other issues at the moment. My understanding is that there may be a shortage due to high demand…OP tends to develop slowly, so I’m not in a rush. I’m enjoying being cancer-free and very reluctant to deal with the meds, at least now.

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Profile picture for indenial @indenial

@wiseage
I’m in the exact same boat. I’ve asked for referrals to different physicians to see if I could start HRT. This is really what I would have preferred. They have all told me the risks outweigh the benefits, due to blood clots and family history of stroke. I’m a healthy weight, eat very healthy and was fairly active prior to the spinal fracture, but I do have familial cholesterol issues with mild plaque build up in arteries. Other than that and osteoporosis, I have no other medical conditions. At this point, I’m contemplating taking the risk of HRT. Unfortunately, I was never informed by my Dr either, regarding the benefits of HRT and bone health. In addition, my mother always drilled it in my head to just suffer through menopause and avoid HRT, due to cancer risk (based on what her Dr drilled into her head, back in the day before HRT was fully understood). Had I known then what I know now, I would have disregarded that advice. I’m not familiar with the REMS scan, but will definitely look into that. Did you have any concerning effects with HRT? And how long were you on it, or are you still on it?

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@indenial

All the research I've read suggest that using transdermal estradial patches do not carry the cancer and blood clot risk. No one told me that estrogen can help bones. I was lucky to find a gyn NP who prescribed the patch and micronized progesterone when I mentioned my concern about my bones since I have the diagnosis of osteroporsis, based on the numbers. I'm too old (67) to have the brain and cardio benefits of the estrogen patch but the research also shows there is no harm. REMS scans -- you can look it up. They are used all over Europe and there is a lots of research that suggests it provides more info than the Dexa and does not expose you to radiation since it is an ultrasound. I'm still on the low dose estrogen patch and micronized progesterone. And yes, there is a shortage nationally so I have to keep moving the Rxx to different pharmacies. Hope this helps.

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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, there are only two advantages of Forteo over Tymlos that I know of. There is no preservative in Forteo; some are allergic to phenol, the preservative that makes Tymlos easier to travel with. And, Forteo is 20mcg, Tymlos 80mcg.
Tymlos is entirely synthetic--made in a lab; Forteo is biologically engineered, which may not be an advantage.
Forteo really is hormone replacement as natural as estrogen replacement. Not bioidentical like the compounded estrogens, but biosimilar like the pharmaceutical products.
Seven years after Forteo with no follow-up medication your bone mineral content will be back to baseline. During that seven year decline, you'd be increasingly likely to fracture, but less likely than if you hadn't taken the medication.
I've never taken Tymlos or osteoporosis medication other than Forteo.
It was just lucky to chose a medication without side effects for me. I'm on extended Forteo; my intention is for life.

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Profile picture for indenial @indenial

@summera1
I hear ya. I can’t do HRT either. Missed the boat on that one, now they say it’s too dangerous because of blood clots. I really wish my doctor had talked to me about the importance of HRT. Not one conversation about it. probably wouldn’t be in the shape. I’m in now, had I been educated regarding bone health and HRT. I’m assuming your Dr will have you pick a second medication after Tymlos, to lock in your gains. Mine was going to be Tymlos, followed by Reclast.

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@indenial
I so get it. No one mentioned HRT to me when I had an hysterectomy. Some drs will offer you low dose HRT even if it’s years but they are hard to find.

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Profile picture for indenial @indenial

@mjb24 Thanks so much! I’ve suffered two fractures in the last few years and still can’t commit to a medication yet. I would love to hear from someone who has completed treatment and is several years out, as this is the timeframe that worries me the most. After the gains wear off. Good luck in your journey as well

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@indenial My friend took Forteo (teriparatide) finishing about 5 years ago with no side effects and good bone gain. The majority people who are years out from completed treatment and happy with it are not available here to comment because they are off living their lives with no current questions about OP. My friend is not on this forum.

Those who do have side effects come here to learn more and figure out what their options are. The worse the side effects, the more likely people are to seek additional information. So expect to hear more from the folks who did have side effects.

I am on this forum because my same friend told me that the bisphosphonate alendronate (Fosamax) that I had naively let a young doctor put me on was not the best solution. So glad that I knew someone knew this and I was only on that for 18 months. For me, I want teriparatide when I have to give up on my current HRT + LIFTMOR type weight lifting.

I hope you get some great responses!

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@bernie97 so sorry, my new L2 fx is 2026, this year!! thx and good luck, bm

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