Looking for Information and positive feedback about Reclast

Posted by judithh580 @judithh580, Mar 10, 2022

I have been diagnosed with osteopenia in my bone density testing. I have had Rheumatoid arthritis for 38 years and am 77. My Rheumatologist recommends me starting Reclast Infusions on March 23rd. I am apprehensive after reading about so many negatives and side effects. I have canceled the infusion once because I am stressing about what I read. Please help me by giving me some positive feedback if anyone has any!

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@judithh580 Hi Judith, and welcome to Connect. I certainly can understand your concerns, and it makes sense to find out all the information you can about benefits and risks of any treatment. I did want to relay some information about osteoporosis and how bad that can be from experience with a family member.

You may want to consider getting an opinion from an endocrinologist because they specialize in issues with functioning of hormones. My mom developed a parathyroid problem which caused her blood calcium levels to be too high, because the disease was causing calcium to be removed from her bones causing severe osteoporosis. To catch that, your doctor needs to be evaluating blood calcium levels. She had been treated for osteoporosis for at least 10 years, and according to the endocrinologist, that may not be effective for a person with a parathyroid problem. She did have surgery, and the bad gland was removed, but the damage was done. The next week, she fell and fractured her foot, ankle and pelvis and was headed for a stay at a rehab center for 3 months. The foot fracture led to a later surgery to lengthen tendons because her foot had twisted from non-use when everything tightened up. That was 8 years ago, and recently she had a spontaneous compression fracture of her spine, and she was not a candidate for a procedure with bone cement to fix it because of having severe osteoporosis. She is at very high risk that this will happen again.

They have just started injections of Evenity and that does have a risk of complications if a person has had heart disease. She is 92 and it is hard to build bone at that age anyway when you spend your day sitting and don't walk anymore. You may want to take your questions to an endocrinologist who specializes in osteoporosis and if they can collaborate with your rheumatologist, that's even better. There are risks to everything, but it is just as important to ask how to minimize the risks from an expert in the field. Osteoporosis in later years is serious, and I worry that another bone breaking event could land my mom in a nursing home for good. You have a chance to increase your bone density through treatment. The parathyroid glands make hormones that control bone density, and a good question to ask would be if your parathyroids are functioning correctly, and how does having Rheumatoid Arthritis affect bone quality? It is always a struggle to get my mom to drink enough water, and that does affect proper functioning of everything. Dehydration can lead to heart arrhythmia (which has also happened to her) and simply drinking enough water will help reduce risks.

Do you have a trusted physician who can help you with your questions? Is there a history of osteoporosis in your family? Would you consider a visit with an endocrinologist?

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@jenniferhunter

@judithh580 Hi Judith, and welcome to Connect. I certainly can understand your concerns, and it makes sense to find out all the information you can about benefits and risks of any treatment. I did want to relay some information about osteoporosis and how bad that can be from experience with a family member.

You may want to consider getting an opinion from an endocrinologist because they specialize in issues with functioning of hormones. My mom developed a parathyroid problem which caused her blood calcium levels to be too high, because the disease was causing calcium to be removed from her bones causing severe osteoporosis. To catch that, your doctor needs to be evaluating blood calcium levels. She had been treated for osteoporosis for at least 10 years, and according to the endocrinologist, that may not be effective for a person with a parathyroid problem. She did have surgery, and the bad gland was removed, but the damage was done. The next week, she fell and fractured her foot, ankle and pelvis and was headed for a stay at a rehab center for 3 months. The foot fracture led to a later surgery to lengthen tendons because her foot had twisted from non-use when everything tightened up. That was 8 years ago, and recently she had a spontaneous compression fracture of her spine, and she was not a candidate for a procedure with bone cement to fix it because of having severe osteoporosis. She is at very high risk that this will happen again.

They have just started injections of Evenity and that does have a risk of complications if a person has had heart disease. She is 92 and it is hard to build bone at that age anyway when you spend your day sitting and don't walk anymore. You may want to take your questions to an endocrinologist who specializes in osteoporosis and if they can collaborate with your rheumatologist, that's even better. There are risks to everything, but it is just as important to ask how to minimize the risks from an expert in the field. Osteoporosis in later years is serious, and I worry that another bone breaking event could land my mom in a nursing home for good. You have a chance to increase your bone density through treatment. The parathyroid glands make hormones that control bone density, and a good question to ask would be if your parathyroids are functioning correctly, and how does having Rheumatoid Arthritis affect bone quality? It is always a struggle to get my mom to drink enough water, and that does affect proper functioning of everything. Dehydration can lead to heart arrhythmia (which has also happened to her) and simply drinking enough water will help reduce risks.

Do you have a trusted physician who can help you with your questions? Is there a history of osteoporosis in your family? Would you consider a visit with an endocrinologist?

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Jennifer I am very sorry for what your mother has been going through. My mom did have osteoporosis, but died at 87 of pneumonia. She was never treated with any medication for her bones.

My calcium always had been in range and I do have a concierge doctor that I rely on along with my Mayo Executive Doctor. Including my Rheumatologist all seem to agree that I should be on medication to improve my bone density. I am just skeptical of Reclast because of the negatives I read online and would like to hear some positive feedback before I have my first infusion.

REPLY

Some doctors are no longer prescribing medications for osteopenia, and the decision is more complex than just looking at a DEXA score. You have to look at risk versus benefit . Can you get a second opinion?

You may be able to use natural methods like diet , supplements (Vitamis D and K, others) and exercise (I recommend tai chi and walking). Maybe read "The Whole Body Approach to Osteoporosis" by McCormick.

I do not know your exact situation (have you fractured? Is your DEXA close to -2..5? ) or why the doctor is recommending Reclast. I would definitely consult an endocrinologist who specializes in osteoporosis before committing to Reclast.

Several articles online say this: "The first part of treatment involves diet and exercise choices. The risk of breaking a bone when you have osteopenia is fairly small, so doctors don’t usually prescribe medicine unless your BMD is close to the osteoporosis level."

The following article is 10 years old but the chart near the end may be helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3411311/

For context, I had actual osteoporosis (not osteopenia) for 14 years before fracturing last year. I was not resistant to meds but MD was leery of some and I reacted badly to others. My point is that I think you have a lot of time- possibly even years- before you have to decide on this, so take your time! You are in control.

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Hi @judithh580, I'll add my welcome along with @jenniferhunter and @windyshores. You may also be interested in this related discussion that @becsbuddy started. She also has an autoimmune condition.
– Are you taking Reclast for osteoporosis? https://connect.mayoclinic.org/discussion/are-you-taking-reclast-for-osteoporosis/

Have you discussed the pros and cons with your doctor and shared your concerns? There may be lifestyle choices that could help delay the need for medication. Another good question to ask. I'd be interested in what you learn and if after talking with your doctor what decision you made together.

Keep in mind that on discussion forums like this one, people are more likely to report their side effects because they are looking for solutions.

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@judithh580

Jennifer I am very sorry for what your mother has been going through. My mom did have osteoporosis, but died at 87 of pneumonia. She was never treated with any medication for her bones.

My calcium always had been in range and I do have a concierge doctor that I rely on along with my Mayo Executive Doctor. Including my Rheumatologist all seem to agree that I should be on medication to improve my bone density. I am just skeptical of Reclast because of the negatives I read online and would like to hear some positive feedback before I have my first infusion.

Jump to this post

Hi Judith580! Not sure if I’m the best to respond to this as I’ve had only one Reclast infusion so far. Mine was done back in June 2021 (so 9 months ago) after completing two years on Forteo. But in case it might be helpful, I had no difficulties with the infusion process and have had zero reaction or difficulties since then. Other than osteoporosis, I have no other conditions or issues that would come into play. So it looks like my body tolerated it just fine.

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Reclast was a non event for me. I always bring a book to read. Partway through, someone brings me a snack to eat. I refuse to read or listen to anyone who talks about bad reactions. It’s not available in my home town so I have it at Mayo.

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I had also postponed reclast infusion due to concerns but ultimately have had two infusions. First one had a day or two of some flu like achiness, but nothing serious…second one, no reaction. It did stabilize my bone loss at that time. Ultimately now have to look at evenity due to changing scans, but have other issues that have led to that. I would have had a third if it would have been a good direction for me. Best of luck

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@mpeters

Reclast was a non event for me. I always bring a book to read. Partway through, someone brings me a snack to eat. I refuse to read or listen to anyone who talks about bad reactions. It’s not available in my home town so I have it at Mayo.

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I don’t want to hear about bad reactions because I’m somewhat suggestible.

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@windyshores

Some doctors are no longer prescribing medications for osteopenia, and the decision is more complex than just looking at a DEXA score. You have to look at risk versus benefit . Can you get a second opinion?

You may be able to use natural methods like diet , supplements (Vitamis D and K, others) and exercise (I recommend tai chi and walking). Maybe read "The Whole Body Approach to Osteoporosis" by McCormick.

I do not know your exact situation (have you fractured? Is your DEXA close to -2..5? ) or why the doctor is recommending Reclast. I would definitely consult an endocrinologist who specializes in osteoporosis before committing to Reclast.

Several articles online say this: "The first part of treatment involves diet and exercise choices. The risk of breaking a bone when you have osteopenia is fairly small, so doctors don’t usually prescribe medicine unless your BMD is close to the osteoporosis level."

The following article is 10 years old but the chart near the end may be helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3411311/

For context, I had actual osteoporosis (not osteopenia) for 14 years before fracturing last year. I was not resistant to meds but MD was leery of some and I reacted badly to others. My point is that I think you have a lot of time- possibly even years- before you have to decide on this, so take your time! You are in control.

Jump to this post

Thanks Windyshores. My DEXA shores are between -1.5 to -1.9 so I think I am not going to rush into getting the Reclast infusion at this time. I will continue to have my done density testing and watch the numbers. My numbers actually improved from the prior year. I am an active woman, but have had knee pain so I was in physical therapy and working out at the gym. I purchased a recombinant bike for my home and I think that might be helping my bone density.

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Hi, @judithh580 Welcome to Connect.

I am currently on Tymlos (no real side effects after the first couple of weeks) and anticipate being on Reclast when I get off of Tymlos. It has been recommended to me by two endocrinologists, a PCP, and a doctor who is a personal friend. The friend's wife is on it and has had no problems, nor has the PCP's mother. I know a couple of others on it also who are also problem-free. I was very leery initially but I am now planning to go forward with it.

I realize there can be side effects but those are extremely rare. Granted if you are that one in 10,000 who has a side effect it is not pleasant but I plan to go with the odds and hope to not be that rare case. I also did read somewhere within the last week that Reclast had the best results of the bisphosphonates in testing.

Good luck with your decision.
JK

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