Questions about Reclast for osteoporosis.

Posted by phoebejo @phoebejo, Apr 16, 2016

My endocrinologist has recently recommended Reclast for my osteoporosis. I have TMJD and also type 2 diabetes which I believe puts me at greater risk for a heart condition. My research indicates that side effects of Reclast can do damage to the heart (atrial fibrillation) and bone disfuregurement in the jaw. I. Would like to know when Reclast was introduced and the efficacy stated in percentages. I have seen information that indicates fatal outcomes for small numbers but nothing to compare that too in terms of successful treatment.

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@lkhender

I have osteoporosis and received the Reclast infusion on May 13th of this year. My joint pain is becoming worse than before the infusion. I'm 71 y/o so this could be due to the aging process, however just wondering if anyone else has experienced this. My endocrinologist wants me to take another infusion in the spring of 2024. I'm not sure I want to do this. My endocrinologist also told me that there's no pain with osteoporosis. She's in her early 20s.

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Having been diagnosed with both osteoporosis and osteoarthritis at age 71 I refused Reclast and any other med. I detest meds. However, because mobility was becoming an issue I knew I had to do something to HELP myself as I was becoming depressed. At first a scooter purchase was a thought. Upon pondering both pros and cons after years of athleticism, being tethered to a scooter also qucikly became an unappealing thought. Instead I counseled with an orthopedic surgeon. Within a few month's time R and L Total Hip Replacements have given me a new lease on life. My "medicine" is strictly a healthy diet rich in vitamins and minerals. Supplement for bones calcium with D vitamin and collagen. I can once again independently care for myself. Weight bearing exercise which is aslo good for increasing bone density is attained through daily walks. And I can again care for many rescues as well as enjoy life without pain. Tylenol normally does the trick for any pain now.

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@ripley

Did you stop taking the Fosamax and did your pain issues go away? I'm curious what route you took after your Dec post such as whether you started on a different medication? I am considering starting Fosamax, hoping to avoid Reclast and the side effects I've read about. This would be the first osteo drug for me.

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Yes I did stop taking Fosamax and started with Prolia. I have had no problems with prolia thus far. Hope this helps.

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@lilgrammaof7

Yes I did stop taking Fosamax and started with Prolia. I have had no problems with prolia thus far. Hope this helps.

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I also had jaw pain after the third fosamax, which is why I stopped it.

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@ripley

Regarding Tymlos and Forteo, my reservations about these drugs are that my blood calcium levels are in the high-normal range and my endo said these drugs raise calcium blood levels. Also, I only have one parathyroid gland so am concerned about taking drugs that are a form of parathyroid hormone. That leaves Evenity. I will discuss all this when I see a 2nd endo Dr soon.

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Prolia builds density but not new bone. The density increases because it inhibits the osteoclasts from taking away old bone. If you can’t take teraparatide, then Evenity is your only bone building option. So far, results have been really good on Evenity, but it is still relatively early days for this drug. There have been some concern about it causing heart problems, but one of my endocrinologists said the studies aren’t bearing that out. My other endocrinologist says we really don’t know for sure yet.

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@ripley

I am trying to decide which medication to start with for my osteoporosis. My recent DEXA scan was not good showing -3.9 at lumbar spine. First endo recommended Reclast, but said I could take Fosamax to see how I respond as far as side effects. My blood calcium levels are in the high-normal range, so are a concern with Tymlos or Forteo. Plus I only have one parathyroid gland so am concerned about taking drugs that are a form of parathyroid hormone. Evenity was mentioned, but I think I should check with a cardiologist first? I read that Reclast and Fosamax have similar results with BMD. I read they build bone too?
Why are these not recommended if you want to take a bone builder later? I read the bone building drugs are usually reserved for people that have had fractures. I have not, as far as I know. Does anyone recommend some type of scan to look for silent fractures, before beginning osteo meds? I see a new endo in a couple weeks to get a 2nd opinion.

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The “typical” bone builders lately are Tymlos and Evenity. I did Tymlos, had bad side effects and switched to Evenity. To address the cardiovascular issues associated with Evenity, I spoke with my cardiologist to get his blessing and would recommend the same to anyone wanting to use Evenity. And regular monitoring of calcium on either Tymlos or Evenity is indicated, especially if one has a high or high-normal range.

My T-scores were not “bad enough”, according to my rheumatologist, to begin treatment with Tymlos/Evevnity, however, once I’d had four compression fractures, he thought it would be best to do a bone building med; due to the number of fractures, I would be approved for Tymlos and/or Evenity, T-scores not withstanding. I’d had numerous Reclast infusions that “held” my scores but Reclast is not indicated long term. I didn’t really have any significant T-score improvement from Reclast, however, my spine moved from OP to normal after 8-1/2 months of Tymlos and 5 of Evenity.

For what it’s worth, I had already had two or three fractures over a span of several years before my doc ordered an x-ray and I was shocked to learn that this type of spontaneous fracture can occur from sneezing, coughing . . . The fourth was discovered in the ER as a consequence of a visit caused by Tymlos issues. Only the first fracture was really debilitating and took quite awhile to recover. Yikes!

Knowledge is power, knowledge is power! Cheers, All!

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@ripley

I am trying to decide which medication to start with for my osteoporosis. My recent DEXA scan was not good showing -3.9 at lumbar spine. First endo recommended Reclast, but said I could take Fosamax to see how I respond as far as side effects. My blood calcium levels are in the high-normal range, so are a concern with Tymlos or Forteo. Plus I only have one parathyroid gland so am concerned about taking drugs that are a form of parathyroid hormone. Evenity was mentioned, but I think I should check with a cardiologist first? I read that Reclast and Fosamax have similar results with BMD. I read they build bone too?
Why are these not recommended if you want to take a bone builder later? I read the bone building drugs are usually reserved for people that have had fractures. I have not, as far as I know. Does anyone recommend some type of scan to look for silent fractures, before beginning osteo meds? I see a new endo in a couple weeks to get a 2nd opinion.

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Fosamax does not build bone, Tymlos and Forteo do. Fosamax maintains bone density and strengthens bones but does not build new bone. However as with all osteo meds, Fosamax has some side effects that I didn’t want to deal with and I needed to build new bone so I chose Tymlos. My bone density was severely compromised and Tymlos has improved my spine by 11%. I’m hoping for more improvement when I have my next scan in July. This is a crazy journey for sure. Hope it’s an easy one for u. Rose 🌹

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@ripley

Regarding Tymlos and Forteo, my reservations about these drugs are that my blood calcium levels are in the high-normal range and my endo said these drugs raise calcium blood levels. Also, I only have one parathyroid gland so am concerned about taking drugs that are a form of parathyroid hormone. That leaves Evenity. I will discuss all this when I see a 2nd endo Dr soon.

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My calcium levels remain at normal ranges with Tymlos. But I believe we are all different and react to meds differently. There are only a few bone building meds and because my numbers were so bad my doc had to appeal our insurance because they wanted me to start with Fosamax and my doc said absolutely not. Would have prolonged my bone loss. So I’m almost done with my 2-year Tymlos protocol and have increased the bone density in my spine.

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@dooshie

My calcium levels remain at normal ranges with Tymlos. But I believe we are all different and react to meds differently. There are only a few bone building meds and because my numbers were so bad my doc had to appeal our insurance because they wanted me to start with Fosamax and my doc said absolutely not. Would have prolonged my bone loss. So I’m almost done with my 2-year Tymlos protocol and have increased the bone density in my spine.

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Would you mind sharing your DEXA scores before and after the Tymlos? Thanks.

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@ripley

Would you mind sharing your DEXA scores before and after the Tymlos? Thanks.

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I will have to look at the report and get back to you.

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@ripley

Would you mind sharing your DEXA scores before and after the Tymlos? Thanks.

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I thought i had the results on my phone but don’t. I’m away from home for a week but when I get home I’ll look in my medical file for the reports. Have a great weekend!

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