What happens when you stop using Reclast?

Posted by osteok2 @osteok2, Feb 15 8:52pm

Any anecdotes about your response to stopping usage of Reclast after 3 years?

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There are studies you can search on the internet ( try something like “Reclast clinical findings”) those might be of more value than an “antidote” which implies a random occurrence. You can also contact the drug manufacturer for direction. You can ask them to direct you to consumer reports. You might find that online too.

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@loriesco

There are studies you can search on the internet ( try something like “Reclast clinical findings”) those might be of more value than an “antidote” which implies a random occurrence. You can also contact the drug manufacturer for direction. You can ask them to direct you to consumer reports. You might find that online too.

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OK, you just motivated me to check this out, since I'm on reclast, too. Found:
-- https://pubmed.ncbi.nlm.nih.gov/35720669/
-- https://pubmed.ncbi.nlm.nih.gov/34524681/

Apparently if you are going to take a drug holiday, this is the osteoporosis drug to have been on (meaning that the negative consequences of stopping are less than for other bisphosphonates). However, these meta-analyses would suggest that it's not a great idea.

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@projfan

OK, you just motivated me to check this out, since I'm on reclast, too. Found:
-- https://pubmed.ncbi.nlm.nih.gov/35720669/
-- https://pubmed.ncbi.nlm.nih.gov/34524681/

Apparently if you are going to take a drug holiday, this is the osteoporosis drug to have been on (meaning that the negative consequences of stopping are less than for other bisphosphonates). However, these meta-analyses would suggest that it's not a great idea.

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@projfan you and others may be interested in the following - it discusses "why" the timeframe: https://www.medicalnewstoday.com/articles/reclast-infusion-for-osteoporosis#duration

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@loriesco

@projfan you and others may be interested in the following - it discusses "why" the timeframe: https://www.medicalnewstoday.com/articles/reclast-infusion-for-osteoporosis#duration

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Hmm...This paper explains the "why" in more depth, and digs deeper into the importance of customization.

From https://pmc.ncbi.nlm.nih.gov/articles/PMC7963175/: "The recommendation for a drug holiday up to three years is derived primarily from extensions of pivotal trials with alendronate and zoledronate and select surrogate marker studies. However, certain factors may modify the duration of bisphosphonate effects on a drug holiday and warrant consideration when determining an appropriate time off-therapy. In this narrative review, we recall what is currently known about drug holidays and discuss what we believe to be the primary considerations and areas for future research regarding drug holiday duration: total bisphosphonate exposure, type of bisphosphonate used, bone mineral density and falls risk, and patient sex and body weight....

Changes in risk factors for fracture are perhaps the most important consideration when re-assessing appropriateness of a continued drug holiday. Risk factors increase the probability of fracture without osteoporosis therapy, and the risk-benefit ratio of a drug holiday diminishes...[H]ere we focus on factors that are most likely to change during a drug holiday. These time-varying risk factors include bone mineral density (including initiation of medications that may lower BMD) and fall risk (including initiation of medications that may increase fall risk)....

Thus, even with all other fracture risk and prior therapy factors being equal (i.e., treatment is indicated and the patient has low BMD), people with larger body frames may not derive the same lasting anti-fracture effects during a drug holiday as those with smaller frames due to less remaining bisphosphonate in proportion to bone size...

All other factors considered, based on the current evidence, a longer drug holiday may be more appropriate for patients of Asian ethnicity versus Caucasian or Black patients, due to lower major osteoporotic fracture risk and higher risk of adverse events from long-term bisphosphonate therapy...

To date, little data examine the effects of osteoporosis therapy effects in men, let alone the effects of drug holidays."

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@projfan

Hmm...This paper explains the "why" in more depth, and digs deeper into the importance of customization.

From https://pmc.ncbi.nlm.nih.gov/articles/PMC7963175/: "The recommendation for a drug holiday up to three years is derived primarily from extensions of pivotal trials with alendronate and zoledronate and select surrogate marker studies. However, certain factors may modify the duration of bisphosphonate effects on a drug holiday and warrant consideration when determining an appropriate time off-therapy. In this narrative review, we recall what is currently known about drug holidays and discuss what we believe to be the primary considerations and areas for future research regarding drug holiday duration: total bisphosphonate exposure, type of bisphosphonate used, bone mineral density and falls risk, and patient sex and body weight....

Changes in risk factors for fracture are perhaps the most important consideration when re-assessing appropriateness of a continued drug holiday. Risk factors increase the probability of fracture without osteoporosis therapy, and the risk-benefit ratio of a drug holiday diminishes...[H]ere we focus on factors that are most likely to change during a drug holiday. These time-varying risk factors include bone mineral density (including initiation of medications that may lower BMD) and fall risk (including initiation of medications that may increase fall risk)....

Thus, even with all other fracture risk and prior therapy factors being equal (i.e., treatment is indicated and the patient has low BMD), people with larger body frames may not derive the same lasting anti-fracture effects during a drug holiday as those with smaller frames due to less remaining bisphosphonate in proportion to bone size...

All other factors considered, based on the current evidence, a longer drug holiday may be more appropriate for patients of Asian ethnicity versus Caucasian or Black patients, due to lower major osteoporotic fracture risk and higher risk of adverse events from long-term bisphosphonate therapy...

To date, little data examine the effects of osteoporosis therapy effects in men, let alone the effects of drug holidays."

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thank you @proprojfan you are good at researching! I actually didn't realize what was being meant by drug holiday! I thought they were referring to the time we take off if we go on vacation or a personal need (for me it was aggressive physical demand for 3 weeks). But what is meant is the prescribed time recommended off of the drug. For example, I had one infusion Reclast, now I am on THE "drug holiday" for two years while I do the Tymlos medication. Then I resume the Reclast annual infusion for 2 or 3 annual times. When I resume the biphosphonate I should have ample tests on file to know exactly what my specialist will recommend. All of this is way over my head because the scholarly articles and pharmacological literature require a medical degree, a science background (which I have a little) and experience in understanding CONTEXT. I am at UCSD Health with an endocrinologist. They are a teaching/research university and medical care institute. At times I don't understand "why" my doctor doesn't want to order tests and consider my concerns better, but later I find out that he actually HAD a handle on it. One such experience was with some bone scan test scores in the beginning. "Hey, don't you want a baseline?!" I asked... but later I found out both the baseline and the test were not helpful until after a year on the medicine. (can't remember which test... P1NP? CTX? ) I often find out that the markers or levels aren't related or inconclusive.

I am skeptical and research the specific thing. However, I am 68 and when I leave the research, my memory doesn't "keep" the details of my research. It is obvious now that it is a necessary and helpful part of the two-pronged approach with a Reclast biphosphonate and Tymlos, abaloparatide, complements. I relaxed when I realized I was on the BEST of the bone formation medicines, as I needed emergency dental work I could only have being on the TYMLOS. Last week, my Orthopedic surgeon put in my visit summary about my "demineralized bones." On the surface it seems somewhat meaningless - but it has far more value than I suspected! The Endocrinologist will find this of significant value, in combination with my DEXA TBS annual tests, and after my 2 years "holiday" on the Reclast. I have a new Menopause Hormone doctor for my HRT. This is critical to my cardiovascular need. All of this complicated stuff is now available to triangulate my care. I could NEVER stay current! I would have no life. So handing it over to very qualified doctors is best for me.

I MUST do my part as well - pushing and prodding with questions; sometimes lame but sometimes incredibly helpful to get the best care for my unique situation. We are all unique. The research is based on generalities, limited body count, and available "best guess" hypotheses at any given time.

Men aren't as heavily impacted by osteoporosis. Plus, men might not have the variables inherent in female physiology, which might not warrant studies. We know women have balance issues in huge amounts compared to men as they age, too. So to deal with this emergent challenge before that of men, might be critical. Women are the caregivers in large amounts. So if women are falling, breaking bones, and can't care for themselves and others -- a dramatic downward cascade of events begins to unfold. (I generalized, but hope you get my point). women only seem to be tested en masse when society notices a BIG problem impacting men. ( Invisible Women: Data Bias in a World Designed for Men by Caroline Criado-Perez). In summary, it's great to be informed and well researched, but you don't want it to consume your life, find great doctors and work as a team!

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I’m about to find out the side effects from stopping Reclast for good because I have decided my first will be my last. The pain that seems constant in both shoulders, left foot, nausea feeling for months and fatigue constantly. Guess I should have asked more questions prior and done more research!

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@dannyandebbie

I’m about to find out the side effects from stopping Reclast for good because I have decided my first will be my last. The pain that seems constant in both shoulders, left foot, nausea feeling for months and fatigue constantly. Guess I should have asked more questions prior and done more research!

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Please meet with your doctors and contact the pharmaceutical company. I also had horrid 1st side effects - worst I’ve ever experienced but short in duration. I was not prepared because I was neglected! I also shouldn’t done it so close to a double cervical surgery! However after doing the research it’s supposed to be a one time event, which doesn’t repeat itself. Also, I will prepare by drinking water and taking NSAIDs before the infusion. Also, they can do less of an infusion. I’m highly drug sensitive. When things like these happen the way I look at it is my body wrapped up its immune system to do the work. The medicine was asking it to do. In other words, I really needed that medicine. I’ve had this happen with the shingles vaccine as well as the hepatitis C protocol. All three times I thought I was gonna die. After the medicine kills or handles what is lying dormant in my body subsequent injections are handled with ease. That is my experience. I want to encourage you to speak with your doctors, look at adjustments to the infusion And look at the big picture. It’s possible your body is really tired because it’s doing the work to make your bones better and it’s doing it in the places where it’s needed most. If you take that approach then maybe it’s worthwhile but ask your doctors for sure because they can certainly adjust the medication dose!

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I’ll be meeting with my primary before I reconnect with my endocrinologist and am in hopes of have a lengthy discussion with her as well, I may speak to a primary outside of VA because there are times that I am not the happiest with her. I can go 4-5 days and then my left foot flares up to the point I cannot stand on it and it has been 8 months. I do agree that the consumption of liquids is important! I have always had issues with hydration because I had Bladder cancer and a nerve must of got hit or something because Every time I have to urinate the burning is quite intense so I limit my liquids and that could be a bit of he issue! All this comes about about 4 months after retirement; something I was not looking forward to!

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