Reclast pro and con

Posted by hedynevada01 @hedynevada01, May 1 4:34pm

I am terrified to try reclast. It appears that so far about 45% of reviews I have read are awful. If I take it I am stuck for a year with possible terrible side effect.

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

@lee1447

May I ask what your DEXA results were that prompted the decision for you to start Fosomax.

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I never used Fosomax. My initial DEXA results my spinal T-score average was -3.7 (with lower lumbars being -4) at the age of 51. Since my mom had severe osteoporosis I wanted to avoid it - excersized regularly all my life, took calcium and vitamin D, etc. Genetics are what they are, however, so for me, it seemed not taking medication was not an option. I waited until I met with an osteoporosis specialist before deciding on what to start with. Ended up going with Tymlos to build up my bone density before using a bisphosphonate. I completed my two years on Tymlos and had 16% improvement in my spine (yeah!!!). I am having a Reclast infusion in 3 days to "lock in my gains". Will likely do 2 more infusions (so three years on Reclast), then testing of bone markers for several years after on no drugs with the bone testing noting when it's time for another step (still TBD).

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I have not read much on this sight about concerns for esophageal cancer as it relates to Recast. It is on the list of side effects for Reclast which surprised me. I know that it is a risk with the oral meds. My mother passed away when she was 80 from this cancer. She was not on osteoporosis meds….she was a heavy smoker which most likely caused this. I am just curious though, because that dx always follows me when they ask about my family history. I have never smoked.

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@lee1447

I have not read much on this sight about concerns for esophageal cancer as it relates to Recast. It is on the list of side effects for Reclast which surprised me. I know that it is a risk with the oral meds. My mother passed away when she was 80 from this cancer. She was not on osteoporosis meds….she was a heavy smoker which most likely caused this. I am just curious though, because that dx always follows me when they ask about my family history. I have never smoked.

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From the studies I have read, it is a very rare side effect with oral bisphosphonates but those same studies found it was not the case with the Reclast infusion. Although esphogitis was on the list of possible rare side effects with Reclast, I could not find any studies that note esophageal cancer is (I did find several that noted they have not found it to be though). I would inquire with your doctor.

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@misst1970

From the studies I have read, it is a very rare side effect with oral bisphosphonates but those same studies found it was not the case with the Reclast infusion. Although esphogitis was on the list of possible rare side effects with Reclast, I could not find any studies that note esophageal cancer is (I did find several that noted they have not found it to be though). I would inquire with your doctor.

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Thank you for your response. I am making a list of issues to ask my doctor about. I will be adding this to my list.

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……I am still doing my research…UGH!!
Earlier this morning I posted my T scores:
right femoral neck -2.8 no significant change from my last scan years ago
lumbar spine. -2.7. no significant change from last scan
forearm. -4.0. Significant decrease of -0.129 from last scan years ago

What did change for me from the last scan to this is that now I am 75, many .years older than the prior scan, lost 2 inches inches in height and I have been AFIB for three years.

This is what I was told: You have a hip fracture risk of at least 7.5% over the next 10 years. Hip fracture carries a 20% 1 year death rate and a 50% rate of loss of independence. Reclast can cut the risk of hip fracture nearly in half. That is the reason for the recommendation to proceed.
Although I have so many apprehensions, I am leaning g toward Reclast!
Comments are appreciated!

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@JustinMcClanahan

Hello @hedynevada01, welcome to Mayo Clinic Connect. Many members have expressed concerns about starting powerful medications such as osteoporosis medications. With only a handful of options currently available, it is understandable to have reservations. Many members have also recently discussed the impact of reading so many negative experiences on community forums has had on their treatment plans.

You may find the following discussion a good counter-balance to your feeling overwhelmed and apprehensive:

"Reclast - Please share your positive experiences"
- https://connect.mayoclinic.org/discussion/reclast-please-let-me-know-your-experience-with-this-infusion/
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Another discussion you may find worth spending some time participating in focused on Good Vibes Only is:

"Positive vibes ONLY thread"
- https://connect.mayoclinic.org/discussion/positive-vibes-only-thread/
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These discussions focus on what some members feel is a "pile on" effect of bad experiences vs. getting to also read when treatment is successful for many. As with any medication, we all react so differently to each and every medication and it is difficult, if not impossible, to know exactly how another member will react to their medication.

@hedynevada01, Have you had a chance to talk with your prescribing provider about your concerns and what you should be looking for after taking the medication in addition to possible alternatives if you react poorly?

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He is not conducive to discussion. He basically said dr google scares prople. I asked about teeth and he tried to avoid anwerrinr. I have had a terrible reaction to statins and no one believed me for years recent dna syudies have found i do have the side effects. I am one of those people tha have opposite reactions t many drugs

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I was terrified, but had my infusion the afternoon of Wednesday 5/14. Had no issues that day. 5/15 woke up with a headache and had some fairly mild flu type symptoms. 5/16 back to normal and today (5/17) I feel great and just went for a hike. I stressed for a long time about it, but am glad I moved forward. I did make sure I was well hydrated beforehand, and stayed well hydrated for the days following. I took tylenol just before the infusion, that night and again the next day. I had requested the slower infusion so it was given over an hour instead of in 15 minutes.

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@hedynevada01

He is not conducive to discussion. He basically said dr google scares prople. I asked about teeth and he tried to avoid anwerrinr. I have had a terrible reaction to statins and no one believed me for years recent dna syudies have found i do have the side effects. I am one of those people tha have opposite reactions t many drugs

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There is a recent scientufic discovery that some people are genetically prone to have muscle problems with statins. Also, I volunteered to be in the All of Us study in which they say they will be able to tell me some medications that I will have adverse effects. I have weird reactions to some medications as did my father. And I might add, it is so frustrating when people don't believe you. I had Lyme, and for decades, no one believed that I had the symptoms I had. I am sorry you go through that with medication.

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@misst1970

I was terrified, but had my infusion the afternoon of Wednesday 5/14. Had no issues that day. 5/15 woke up with a headache and had some fairly mild flu type symptoms. 5/16 back to normal and today (5/17) I feel great and just went for a hike. I stressed for a long time about it, but am glad I moved forward. I did make sure I was well hydrated beforehand, and stayed well hydrated for the days following. I took tylenol just before the infusion, that night and again the next day. I had requested the slower infusion so it was given over an hour instead of in 15 minutes.

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Thank you posting your experience. I, too, am pretty concerned about my first infusion in June, but there isn’t much of an alternative. At 65, I hope I can continue to be active and stay independent for as long as possible. Thanks again!

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