Is Reclast Safe?

I am afraid to start this medication. What do you all think?

Report post

48 replies. Join the discussion

Here is an earlier post from a caring man that lost his wife from Reclast.

National Osteoporosis Foundation
Support Community

HomeNewRecommendedDiscussionsJournalsMembersAboutJoin

AllActiveRecommendedTopicsStart a discussion
RECLAST CAN CAUSE FATAL REACTION


By makwa · February 6, 2010 at 1:49 pm · 28 replies
In Osteoporosis medications
Recommend Problem More options
Shared with the public
It is important to know all of the facts about Reclast. While this drug has improved the lives of many by reducing the risk of bone fractures, the fact that there have been deaths associated with its use has been down played.

The FDA issued a warning last year that it had been reported to them that there had been 24 cases of kidney failure resulting in 7 deaths after Reclast infusions. My wife took Reclast in December of 2007 and had no side effects at all. She took it again in October of last year and was dead 35 days later. One of her doctors told me that just because you have no side effect the first time is no reason to think everything will be ok the next time you take it. Reclast stays in your body a long time and in my wife's case the second dose was toxic to her system. They tell me there is no way to tell how much is in your system and if it is toxic to you there is no way to get it out of your system.

Novartis the company that makes Reclast says the warnings are packed with the drug and it is your doctor's responsibility to tell you what the side effects are. Doctors should tell patients about the serious side effects and let then know when to seek immediate medical attention. If we would have known the serious side effects of this drug, the out come for me may have been different.

If you have taken Reclast and had other than mild side or prolonged effects report it to the FDA, it may save a life.

One of the doctors in the hospital said my wife should not die in vane and it should be my lifes ambition to be an advocate for drug safety by telling her story. The doctor also told me that since the occurrence of severe Reclast reaction was so rare that only a few of the doctors who saw my wife has seen it before. I was also told that all of the circumstances concerning my wife's hospitalization point to Reclast.

I have posted my wife's story under several other topics as well as this new topic. I don't want to scare anyone, but emphasize the importance of getting the facts and understand the risks associated with drugs like this. My wife was being treated for RA, which was in control, she was active both physically and mentally, she had no risk factors associated with Reclast use and was given Reclast on October 8 of last year. After being in good health prior to the Reclast infusion she was admitted to the hospital with full blown kidney failure 19 days after the infusion. While in the hospital my wife had kidney failure, respiratory failure and confusion. Her calcium, potassium, magnesium, and phosphorous could not be regulated. She kept getting weaker and in the end she was unable to swallow or eat.

She had NEVER in her life suffered from any of the afflictions she experienced after her October 8 Reclast infusion. After suffering terribly in the hospital for 16 days on November 12, 35 days after Reclast she died from a massive hemorrhage. The doctor told me if she hadn't had all of the issues that put her in the hospital she would still be here enjoying life.

They tell me there is a test that can be done to see if you can tolerate zoledronic acid (Reclast), ask your doctor for sure.

I hope this post hasn't been too upsetting. I just don't want anyone else to suffer or be left alone.

Be careful, be informed and most of all be safe.

Edited February 6, 2010 at 5:52 pm

Report post

I was diagnosed in 1997 with osteoporosis. After taking four different prescriptions, and having side effects from all of them, I am doing it the natural way. The only way for you to make a good decision for yourself is do your research. You have come to the right site, as there are so many members that are very educated in this topic. In my opinion, after reading this site for over 3 years, I have come to believe that the drugs like Reclast are the very last resort, (for myself, as I am very sensitive to drugs, I would never take Reclast) Cubbiefan has testified in front of the FDA about all of the side effects of Reclast. I have seen a few who had no problems with Reclast first time, but it seems to be the next treatments that cause many problems. One member moved and the hospital got more money for Reclast than the other treatment. Bottom line hospitals and doctors need to make money. Check out Better Bones web site, there is a FRAX test you can take to help you with your risk of fracture. She is a leading authority on bones...many good things in her blogs, right hand corner of web site. She does have a guideline of tests to be done when you have osteoporosis. My best to you!

Report post

Helly,

Sally48 couldn't have given you a better reference to help you make your decision about the drug, "Reclast." Makwa's story about losing his wife after a 2nd infusion of Reclast is not a story too many of us have heard from our doctors when they urge us to take the infusion. When the doctor I had at the time I had my infusion of Reclast in February of 2009 suggested I have the infusion, I didn't like the idea and expressed this to the doctor but he continued to urge me and even told me that my bone density was 10% worse than the previous test done 4 years earlier by my former doctor. Unfortunately, I didn't listen to my better judgment when I finally agreed to have the infusion. I can say with certainty that this is the worst decision I've made in my many years on this earth.

I did experience the flu like symptoms and fever for about 3 days and had one day of feeling almost normal, and after that, I've had constant problems with my health. It's almost 3 years now since my infusion of Reclast and I suffer on a daily basis as do many other people on this site who have also taken their doctor's advice and agreed to the infusion of this poison.

Twelve days after my infusion of Reclast I was admitted via ambulance to the Emergency room with a Myocardial Infarction (heart attack) and Pulmonary Emboli (blood clots in both lungs). After spending a month in the hospital in Intensive and Cardiac Care, I was given the news that I needed to have Open Heart surgery but the blood clots had to be dissolved first which took approximately 5 months. I had a Triple bypass in July of 2009. That wasn't the end of my misery from this drug. I've developed severe bone spurs throughout my body but the major area they seemed to concentrate is in my hands which makes it difficult to do too much that requires the use of my hands.

The first 1 1/2 years after my infusion, I was in constant pain in the bone and deep muscle tissue. The pain was so severe that I was placed on pain medication which I take to this day. The pain now is mostly in my joints and, of course, my hands which are in constant pain.

I developed Atrial Fibrillation which required numerous hospitalizations and the upper chambers of my heart are now enlarged. I also have 2 heart valves that are defective now and I'm unable to walk from one side of our small Ranch home to the other without becoming completely winded. I am waiting to have a procedure called 'Cardiac Ablation' which is supposed to help put my heart back into a normal sinus rhythm. At this time, because of the Atrial Fibrillation, I've been placed on some very strong medication to help keep my heart in the proper sinus rhythm.

I was recently diagnosed with stage 3 Kidney Failure which, as with all the other diagnoses' since the Reclast infusion, came as a complete surprise to me. Prior to the Recast infusion, I had high blood pressure and that was my major complaint. Now, I'm near the point of being almost home bound.

Prior to the infusion of Reclast, my life was filled with the joy of babysitting our youngest granddaughter and being able to travel without worrying about having an attack of A-Fib or becoming totally incapacitated with nausea which has also been another side effect after the infusion. My life now involves constant visits to doctor's offices and special procedures and I'm being completely honest when I say that some weeks, I've had as many as 3 separate doctor's appointments, sometimes seeing two doctors in the same day. I now have several specialists that I must see in order to have any quality of life at all since the infusion.

Sadly, I'm no longer able to baby-sit our precious granddaughter and this is probably the most hurtful of all of the negative things that have taken place in my life since my infusion of Reclast. I miss her being able to come to stay at Poppy and NaNa's house. Her momma always has to stay with us whenever our grandbaby comes to visit because we never know when another bout of A-Fib will strike or if I'll even be feeling up to getting out of bed. This drug has all but taken my life from me and it's hard to believe that the drug is still on the market, regardless of the multiple severe side effects it causes, one of which is death!

Helly, you asked, "What do you all think?" I'm not telling you not to have the infusion. This has to be your decision and your decision alone but as Sally48 said so well in her post, "Be careful, be informed and most of all be safe." I cannot agree more! This is the reason I posted my story. I know how my doctor at the time worked hard to sell me on this drug and I innocently trusted his judgment. I wish I could go back almost 3 years and start over. I positively know, without a doubt that I'd not be in the position I am today had I found this Inspire site and read the many testimonies here. I also wouldn't be in the position I am today had I done research elsewhere about the side effects of this drug Reclast and the other Bisphosphonate drugs.

I'm truly sorry if my post upsets or frightens you. I've been completely honest about what's taken place with me and if you search this site alone, you'll find many other people who suffer as I do after being infused with Reclast. So my answer to your question is within my testimony. If I knew then what I know now, I would never had allowed my former doctor to talk me into having the infusion of Reclast!

I wish you well
Mariah41

Report post

G-d bless you all for your honest and caring words. I shall continue to research for other ways to help with the osteoporosis.

Report post

Again, Makwa, Sally 48, Mariah 41, My heartfelt thank you!

Report post

Helly,

I second and third what Sally and Mariah have to say regarding Reclast.

My father had his first and only Reclast infusion in Sept. of 2010...he died 54 days later. Before Reclast he was on one prescription medication. He traveled extensively, and played golf twice a week. He had complete blood work done prior to his infusion, and followed all protocol. Yet, 3 days after Reclast he began having problems. Each day his symptoms were worse, and new symptoms kept coming up. ( A. Fib, kidney failure, muscle spasms, severe bone pain, respiratory issues ...) Later we found that these were common symptoms to Reclast, but almost NO Dr. will tell you this. They give you the mild flu-like symptoms baloney. I will try and give some of them the benefit of the doubt , and say that they don't know...they are ignorant.

Unfortunately for us, we did not research this drug beforehand. That is a regret I live with everyday. My research didn't come until it was too late for my dad, and the only reason that I am on this support group is to warn others of our fatal mistake.

My dad was not alone , the 2010 number of fatalities are over 350, the number of reported adverse reactions are over 650,000 , just on reclast. And if you knew the hassle it is to report a problem to the FDA, you would realize that these numbers are probably much higher. I have found out volumes about our drug system, the FDA, and these very dangerous bisphosphonate drugs. I wouldn't touch them with a ten foot pole, especially Reclast, which is by far the most dangerous; as there is no antidote, or way to reverse this drug after it is in your system. And the effects and damage it does goes far beyond the one year that it states. It is like playing a game of Russian roulette, maybe you'll be lucky, and maybe you won't... and if you are one of the unlucky ones your life will be altered forever. My dad told me several times before he died that he wished so much that he could go back to the way things were before Reclast.

You do have to make your own decision, but make sure that you know more than your Dr. about this drug ( unfortunately that's not too difficult) and DON'T LET YOUR DR. BULLY YOU!!! That is what happened to us. The Dr. scared and bullied us into this decision, and I am still working on completely forgiving him. Look at patient's comments...they are the real experts.

Yes, I know that every drug carries risk, but this drug is a lie ( it doesn't build strong bones, it only appears to make them denser in some people...dense bones are not necessarily strong bones) and these drugs are causing our bones to die ( ONJ), and our strongest bones to break ( research atypical femur fractures with bisphosponates) Does this make good sense??

You are doing the right thing by asking , and researching before you make this critical decision. I 'll be praying for your discernment, wisdom, and strength.

Good luck

Report post

Sally,

As you make your decision, please bear in mind that there are going to be horror stories for every single drug, for whatever it is meant to treat or cure or prevent. You are reading about a handful of terrifying things and I do not deny that some of them may even be due to the Reclast they took. Some may also just be co-incidental, and totally unrelated. For example, atrial fibrillation of the heart has been linked to Reclast as it occurs in a slightly higher percentage of women on drug than on placebo in clinical trials. But, even women on placebo also developed atrial fibrillation. There is no way to know. You are also reading horror stories by people who, due to their personal or close relationship to someone who took the drug, and so they are extremely biased in their judgements.
But, what you will NOT be reading here in these posts are the millions of people who are taking the drug safely, and who are not breaking bones as a result. Asking "Is Reclast Safe?" is like saying "Is driving a car safe?" For 30,000 people every year who died in a automobile accident, probably not. But for millions of others who drive their cars daily for their entire lifetimes, it is perfectly safe, and you would never read about any of those safe drives taken every day on this site.
There is a risk with any mediciation, even something as natural and time-honored as aspirin. People can be deathly allergic to it, they can get bleeding ulcers from it, their blood may not clot properly from it and they can have a hemorrhagic stroke in the brain and die or be permanently disabled from it. But that didn't stop the native Americans from chewing birch bark (a source of it) to cure their headaches. It shouldn't stop people at risk of heart attacks from a daily baby aspirin either.
No medication, not even any of the "natural" alternatives that people here will sell you, can guarantee that you will never break another bone in your body if you have osteoporosis. If they do, they are lying to you. The biggest difference is that you cannot sue the manufacturer of the non-FDA products if they don't work, because none of them will dare leave of the disclaimer hidden in really fine print on the back of their labels "This product is not intented to diagnose, treat, cure or prevent any disease." They will hide behind that when something bad happens. If it really worked as well as they claimed, they wouldn't need to add the disclaimer to their wares, would they?
The risk of something bad from taking Reclast is far less than the benefits of taking it for the vast majority of people, but it can never be made to be zero risk. There is a much greater risk if you decide to do nothing, if you truly have the disease, but there are a few women with extremely bad osteoporosis with really low T-scores, who will live a long and healthy life and die without ever breaking any bones too. Their loved ones after their passing could write a story telling everyone here that osteoporosis is a made up disease and that they are so glad they talked mom out of taking it.
The FRAX calculator that Sally48 mentioned ( the original web-site is from the World Health Organization, and developed at the Univerity of Sheffield, in the United Kingdom, at www.shef.ac.uk/FRAX/ can be used to help you decide what your 10 year risk of fractures is (and your 10 year risk of NOT fracturing is), and you can decide if your risk of fractures is higher than the tiny risks of taking medications to lower that risk by half with Reclast. None of the other natural alternatives offered here can tell you with any scientific rigor, how much they can lower your risk truthfully. They only have testimonials of the ones who took it and never broke a bone. They will never post of all the ones who took it and died from a hip facture anyway.

Report post

dxaguru,
No disrespect intended by what I'm about to say. Hopefully, you'll better understand why the people who have posted on this thread and other threads regarding the drug Reclast have taken the time to write their individual stories. I don't believe any one of us came here to start a war or to deliberately trash a drug. This particular thread was started by Helly because she obviously wanted input about a drug she is concerned about which happens to be Reclast. Helly simply made a statement and asked the question, " I am afraid to start this medication. What do you all think?"

I can't speak for the other people who responded to Helly's inquiry but I can speak about why I feel compelled to respond whenever a person asks directly about the drug, Reclast. I speak from my own personal experience and I will continue to speak out about my life, post Reclast as long as I have strength left to tell my story.

I'm not being compensated in any way to speak negatively about this drug so I have absolutely no reason, other than to speak about my own experience and to let a person who asks a simple direct question about the drug Reclast know what happened to me. On the other hand, I question why a person would come to the site and present such a hard sell in favor of this drug and seemingly try to downgrade the truthful testimony of the people who have most definitely had their lives disrupted terribly after being infused with Reclast. Those of us negatively effected only have our truthful, real life experience to share. As far as I know, we don't have the privilege of being represented by huge lobbyists in D.C. and therefore, have no reason other than to simply tell our story to the people who request an honest response here.

I'm pretty sure that none of us recommended that 'Helly' make the decision 'not' to have Reclast infused based on our various testimonies. We've simply answered the question asked, ("What do you think,?") and left the decision making up to Helly after advising that she do her own research.

BTW, it appears, in your opinion, that you are "extremely biased" in your post about the great value of this drug, Reclast. Your extremely negative comments about the 'natural alternatives' you claim "people here will sell you" rather than take a chance on having their lives disrupted forever by allowing a drug to be infused into their veins is also a teeny bit revealing as to motive on your part. I must have missed the advertisements. I don't believe I've heard of anyone here trying to "sell natural alternatives." I've read many accounts about people improving their scores after using natural alternatives but never trying to sell or push natural alternatives.

I didn't set out to come here and start a verbal battle regarding Reclast, though this post may appear so. I simply answered this person's question in a truthful, no nonsense way based on my own experience with this Drug. I believe the other people who responded to this persons inquiry were also speaking from the heart, and in truth about their very real, very personal life changing pain after receiving the drug Reclast.
As bad as my life has been since my infusion of Reclast, I cannot begin to imagine the tremendous emotional pain of the people who have lost beloved members of their family are experiencing.

Report post

I don't blame you for being afraid. My rheumatologist tried for 2 yrs to talk me into it and NO WAY! In fact, all the drugs side effects are enough to say NO for me. Others have their opinions but this is mine. I have researched EVERY drug and still research Osteoporosis when I get the urge. Like I say this has been around way before they came out with all these horrible drugs. What really gets to me is when you see all these commercials on TV on ANY of the drugs, notice at the end they start blabbing off all the horrible side effects!!! I just cannot help believe if something affects the body in such a strong negative way it just isn't meant to be and I also believe and know the drug companies and drs. work together!!!! I hope I have not disappointed you.

Report post

Mariah,

Spoken beautifully! And tactfully!

Report post

Mariah,
I appreciate the fact that you shared your personal experience about reclast.

I just wanted to say or ask if your calcium level has been thoroughly investigated along with a parathyroid level? An adenoma of the parathyroid in the neck can cause heart problems like a fib and also valve problems. I just wondered if any of the conditions you are experiencing could be coming from Hyperparathyroidism. Also, some people actually have the condition yet the gold standard that most Dr's follow is a noticeably elevated calcium and yet some people can have a borderline high for various reasons and still the adenoma is wrecking havoc on their body. A good site is www.parathyroid.com and also pubmed and search parathyroid and heart valve problems. Just thought I would mention these things. Nancy MI

Report post

Mariah41 et al: "On the other hand, I question why a person would come to the site and present such a hard sell in favor of this drug and seemingly try to downgrade the truthful testimony of the people who have most definitely had their lives disrupted terribly after being infused with Reclast."

Assoication doesn't prove cause and effect. I don't get any money from the makers of Reclast or any other pharmaceutical companies either. People need to get a fair and honest representation of the facts, the actual and not the perceived risks, and let them make up their own minds. I offer the yin to balance your yang as it were.

Report post

dxaguru,

I understand your point of view, as many women had nothing to treat osteoporosis. In 1992, Fosamax was the first treatment, which I started taking in 1997 and took for 11 years. I worked lifting mail and thought that my constant muscle pain in my back was from the lifting. When I stopped Fosamax in 2008, all of my muscle pain went away in one week, I was still lifting mail for the USPS. My nurse practioner suggested that I stop Fosamax, as her mother had to have all of her teeth removed from taking Fosamax. I once read where a Doctor never prescribed a drug for his family or friends until it had been on the market for TEN years. That is when all of the side effects have been found out by us, the guinea pigs who took the new drugs. When I had my last Dexa, and I said I had stopped Fosamax, I could see the technician as I left in the office telling all the other office workers. It makes one think that if word gets out that they won't have enough patients to support the costs of the expensive machines. I believe an alkaline diet, eating healthy foods, weight bearing exercises, supplements with calcium, magnesium, D3, K2 and other bone supporting nutrients, getting a weighted vest to walk in, if you are thin or underweight, and having all the tests to rule out what is the cause of your osteoporosis should be first line of defense. If you have fractured, it is a cause for concern and should be addressed. Many doctors do not want to do the tests, they just want to write a prescription. And then there are doctors who do treat their patients, and find out the cause and offer the best treatment for each person. Blanket writing of Reclast or any medication to the vast majority is not acceptable. Each individual has to do their homework, make their decision, and feel GOOD about it. A pioneer in woman's health, Dr. Christine Northup(founder of Women to Women) challenged her male medical physicians, as many clinical testings were done only on men for years. She helped change health care for women. I posted Janet's story to help newly diagnosed women look at the side effects of a drug 50 times more powerful than the first drug put on the market in 1992, Fosamax. Is it better? A question each person should ask themselves. We all should the question why? Is it our western diet? Is it our sedentary life style? Is it that we all live longer? Is is the lack of magnesium and minerals in our soil from mega farming? Is it too much sodium in all the our food products? Is it too much fluoride in our water? Is it hereditary? Is it other drugs we take? Is it a problem of our parathyroid or other body function? Thirty six other countries prescribe strontium ranelate to prevent osteoporosis with fewer side effects and good results, which the FDA is studying now. In this country, we can get the base of this drug, strontium(a mineral like calcium that is in our bones), in strontium citrate form, which some have had success with, and some not. Look for the cause, get serious about your bones, and make the changes to help your bones, and make the decisions that are the best for YOU! Happy and Healthy New Year to all!!! :)

Report post

Imo, one would be very foolish to take Reclast, especially after having been on this forum for any length of time and reading people's experiences. Also, go to askapatient.com to read more experiences.

Report post

I have the same feeling as you do acooke4. That is why I have reported dxaguru to the staff and have asked staff to review what dxaguru is saying and what credentials/experience she brings to these discussions.

Report post

I checked and dxaguru is a male. So, it is from his male point of view. I respectfully have learned to listen to all sides, and then make my own conclusions. Everyone has a right to their opinion. He apparently disagrees that Reclast is a bad drug. Perhaps when you get Reclast injections, you get to go for more DEXA scans, it may give him job security. Who knows! I know for me that Reclast will never be an option.

Report post

Sally,

You crack me up!! thanks for the laugh.

Report post

Is Reclast Safe?
Not really.
And you will have no legal recourse for any damage it causes.

Report post

Take strontium....do your homework on here. Spend a couple of days reading this site and others and master this issue that can affect your future health

Report post

If it walks like a duck... Dx + Guru = Dexa Scan Interpreter extraordinaire?

@acook4 - Thank you for standing strong and not backing down. Your words always inspire me and your dedication to helping get the truth exposed continues to strengthen me.

@Sally48 - Thank you also for the exceptional information you always provide. You know what you're talking about also and help all of us so much with your wisdom and knowledge. I too appreciate your sense of humor. You gave me a chuckle tonight and we all know that laughter is excellent medicine! : )

@Helly - Thank you for checking with the staff about this person.
I'm sure you'll find the answer you're searching for. I believe you're intelligent enough to see where the "fair and honest representation of the facts" can truly be found. The fact is, people are being harmed and are dying because of this drug. You asked "Is Reclast safe?" My answer would be: No, it is definitely not safe!
Mariah41

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support NOF

Help the National Osteoporosis Foundation reach its goals and support people like yourself by making a donation today.

Donate to the National Osteoporosis Foundation

Learn more about osteoporosis awareness and prevention

Discussion topics

Links and resources from NOF

Community leaders

Disclaimer

The National Osteoporosis Foundation would like to remind visitors and community members that the views and opinions expressed on this site are not necessarily those of NOF. Please consult your personal healthcare provider regarding any medical information that is shared on this site.