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Reclast has ruined my health and my life

idah
  • By idah
  • Posted October 28, 2008 at 4:27 am · 85 replies
  • Shared with the public
  • Edited October 28, 2008 at 4:31 am
5 Recommendations

I took reclast in February 2008. My endocrinologist said it was the best drug on the market for the treatment of osteoporosis and it had few and begnine side effects. I had doubts but chose to believe what he told me. Since then I've done a lot of research and this drug appears to have more side effects than one can think of. I feel I've been used as a guinea pig. I started feeling sick almost immediately and by June 2008 I thought I was going to die. I had to stop working in June because of my health. After three months I lost my health insurance. I have gone in debt to pay for medical--fortunately ---I have equity on my home and have been borrowing from my equity loan to pay my bills. I've seen dentists and oral specialist becuse I've grown bones in my mouth (tori and exostosis), my blood calcium is high and my vitamin levels go up and down. I suffer from intense burning sensations especially on my back, head and inside my left ear. I am in chronic pain and scared as doctors seem to know very little about the effects of reclast. The pain doesn't seem to get better. My endocrinologist put me on anxiety medications and basically washed his hands of this whole mess. My primary physician has been really good and has had me have numerous tests to try and find out what's going on. So far no luck. I am worried, ill, and scared. Reclast has taken my health, my job, my peace of mind and has ruined me financially.

Explore topics in this journal entry and replies:

Exercise Surgery Chronic pain Back pain Ibandronate Anxiety Anorexia Fibromyalgia Polymyositis Nausea and vomiting Stress Evista Dizziness Premarin Boniva Zetia Levaquin Elidel Forteo Allergies Fractures Physical therapy Fever Hyperparathyroidism Actonel Weakness Bufferin Fibrous dysplasia Tylenol Cancer Esophageal cancer Osteopenia Chemotherapy Prednisone Osteoporosis Nortriptyline Dehydration Arthritis Zoledronic acid Fosamax Chantix Reclast Pain Accutane Stress fractures

85 replies

sdivas

April, a few thoughts. You ask "what's the point". How quickly do we purchase a car? We usually ask questions; walk away, research, visit other dealers. Yet when it comes to our bone health; ingesting medications, we take the prescription with no more than the insert information ... and often, we don't even read the insert. We accept the diagnosis and prescription with trust not knowing the right questions to ask ...... but the point is by researching further than the insert and our doctors, we may not have side effects or we may decide the drug prescribed is not the right drug for us. I took a year from diagnosis to decide whether I would take a drug. At that time, my choice was Fosamax or Actonel. With notebook in hand, I started making phone calls. I have the drugs listed; pro's and con's and what will and will not work for my lifestyle; dosage; daily, weekly, monthly; possible side effects; etc. We're all different in our approaches, but as an adult, I question when it is about my health . A woman that is on her second year of Reclast; taking only as a preventive told me that she listens and trusts her doctor because her doctor is making the big bucks to know the information. She accepted the prescription without any question. How many people are the same as this woman and/or accept the medication or out of fear without question. I've never thought of myself as a customer; although in this case, I'm not sure the customer is always right because there are so many variables. What we are right about is our experience with our drug of choice for bone loss. But if I am a customer, then the pharmaceutical company that wants me to choose their drug is working for me, and is accountable to me. Picking up the phone, writing letters, sending emails; asking questions; sharing my thoughts and opinions is something that I've done for many years; whether it is an author of a book or pharmaceutical company. Personally, I don't care about the perks my doctor may receive from pharmaceutical companies. If my doctor is receiving a free cruise a month, it doesn't mean that I have to accept and take the suggested medication. I hear my doctor .... I listen and follow my own instincts. When I make my own decision, I can't blame my doctor or the pharmaceutical company or anyone for that matter. I read the experiences of other people, but I am not swayed; nor do I become fearful from what I read. Whatever the outcome, whatever the consequences, I have taken responsibility for the decisions with my bone loss. As you know, my med is Actonel. You've asked me several times how I can be sure. I can only be as sure as the information that becomes available from P&G over the course of the years of following people that are taking the drug, and I continue to follow through over a period of time with the companies that make these drugs. I keep a ledger file; and although I've spoken with several of the drug companies, after reading your post, I realized that I had not updated information on Boniva (active ingredient: ibandronate sodium. Some of the questions that I've asked of other drugs can't be asked of Boniva because it is a newer drug, but the response I received is much different than the response that you received. Actually, Genetech, which is a member of Roche Pharmaceuticals is interested in side effects ... and has a separate contact line for side effects. I'll follow up with another post later today with some of the information that I was given in answer to my questions about Bonvia. But I think the information will be better served in a Boniva thread. Sandi

April995

Hi Sandi,
Never thought to call the drug co. before I took Boniva!
I'm thinking , what would be the point?
That is why I go to a Dr. as I thought I would get the answers from him.
I'm also thinking, how many people that get side effects from these types of drugs, even call the drug co. that makes them.. At least, that was how the "Nurse" that I talked to portrayed it.
she also said, there are only 3 people here to answer these types of phone calls, that is how unusual it is!!
I cannot believe that.

As I said. The only reason I called about Boniva, was to ask, When will the pain subside, and I did want to let them know about my side effect. I also thought it would be of interest to them! Not so.
If that is having a Attitude then I had one!!
When people are sick, I don't think there too happy, and to get someone on the phone with the Attitude, We do not get many calls about the side effects about Bonvia, Who is she kidding!!

My Endo wanted me to take Forteo, or Reclast. After reading the postive and negitive, I decided against both of those, and took the only one monthly Boniva, which I was told from both my Drs., Boniva was better then nothing, and the side effects , if any, would be very minimal.
Now my Dr. said, I do NOT want you taking any type of Osteoporosis drug.
I also do not take any other type of Medications. (one bufferin puts me to sleep).

I eat mostly organic food, and eat healthy. Take Vitimans.
My problem is, I do not do as much exercises as I should, due to a heel spur I have, and I can not wear tennis shoe, or a shoe that goes over the top of my foot. Since I walked so much in Sept. wearing a lite weight puma tennie, the top of my foot is totally numb. I have thin feet, and it seems it caused a nerve problem!! Go figure! ..

Sandi, after I left my last post, are you saying you called Roche? And why?

I have owned business's, and when anyone came in with a problem, and was up-set, I'm also there (as the people that work for me) to defuse any problem, and make a , a unhappy customer, into a happy one . As I want my customers to walk away happy, feeling good, and knowing they will be back.
The Customer is ALWAYS right.

Take Care,
April

sdivas

April, it may be a different outcome if we made the phone calls prior medication. Boniva has not been my choice, but your post made me curious. If you are interested, I will happy to share my phone call and the answers I received from Genetech which is a member of Roche Group. Some of my questions were not the same that I present too P&G because Boniva is a newer drug. By the way, there is a chain of progression if the nurse was rude. But I do know that in order to receive answers, we must be ready with our questions with a calm, courteous, but assertive manner .... which I understand we may not do if we are phoning with side effects. That is not to say that you were not calm, courteous or assertive, but often side effect phone calls are made in anger ..... which often turns off the people that can give us the answers.

dcarlo

I was put on high doses of Prednisone in mid-April, 2009 for treatment of Polymyositis.I was in the beginning stages of osteopenia. Prednisone weakens the bones potentially causing fractures. Therefore, I elected to have an infusion of Reclast on June 1, 2009 by IV. I had no side-effects.

I consulted an expect of my acquaintance about what problems I might encounter taking Reclast and was advised that except for transitory side-effects, such as flu-like symptoms which should dissipate after a few days, there were few side-effects from Reclast unless major dental work was needed.

Then a tooth broke and the required treatment was extraction of the tooth an placement of a bridge.

Prednisone delays healing and Reclast in rare cases mostly for persons receiving cancer treatment MAY cause jaw necrosis. The jaw necrosis is a rare side-effect, but in the cases of administration of Reclast by IV, the side-effect of jaw necrosis, while still rare, is slightly higher. Therefor, I elected to have nothing done about the broken tooth which was causing me no problems. I am not being treated for cancer, but I did not want to take any chances of developing any more problems than I already had with polymyositis.

I have been advised that should I wish to have major dental work done to wait at least one year after the Reclast infusion and to refuse to have the second infusion for 4 or 5 weeks after the major dental work.

Since that advice I have read several article saying that in the case of osteopenia versus osteoporosis, the second infusion should be taken two years after the first infusion. In the case of osteoporosis , the second infusion can be taken one year after the first. Routine dental work, such as cleaning and any work that is inside the tooth such as a root canal can occur at any time without fear of the jaw necrosis.

All drugs have side-effects. When taking multiple drugs or having multiple conditions, the side-effects can be compounded. It is important to do the research on any medical procedure or drug before consenting to the administration or the treatment of drug.

Even then, since all of our bodies may react differently to any treatment or drug, there are no guarantees of safety.

Other advice I have received is to never take any drug unless the FDA has approved it for 7 years. This would give the FDA sufficient time to hear of any unforeseen side-effects.

Therefore, when deciding which procedure or drug to have administered, one must weigh the known benefits versus the side-effects and then decide.

I hope that you can be feeling better soon. None of this is fun.

winston55

I was on once a week Actonel for 7 years. Took Actonel once a month for a year. and I had my first Reclast infusion 09/18/09. I havn't had any side effects.

April995

Sandi,
I do not know what goes on in meetings with Pharms Co, but I know how I was treated when I called to report my side effects from taking one monthly Boniva .
All I really called them about, was , When will the pain go away?

The Women I talked to when I called the drug Co. , said she was a nurse!!
She said, its VERY Unusual to get a phone call about a side effect from Boniva! I wonder why she is hired to answer the phone, it sure isn't for people calling to say , what wonderful drugs your making!!!
It seems from reading here, when someone has had side effect from Boniva, its been the same as mine.
Awful flu symtoms, where every bone in my body hurt etc. for over two weeks. After a year, I still get shocks of pain!..

She also informed me, if I made a complaint, my Dr. would have to fill out a few pages of paper work, and so would I.
If she thought that would discourge me from filing a complaint, she was WRONG now!

When I asked how many people Boniva was tested on, before it went on the market for sale, she said (Can't remember the exact amount) 300 and something!
I said, you sell millions of this drug, and its only been tested on such a small amount of people? She said, thats right!!
I asked her for the number to the Fda. She gave me the phone number, but was not happy about it.
I got a different Response from the Fda. They where very interested to know how my body reacted when I took Boniva etc..

I also find it interesting how drug co. sales people give away there samples to the Drs. for the 1st time.
They wheel in a large spread of Catered food, then have a table set-up for lunch etc, with the Drs..

I'm not saying all drugs are bad, They have saved my Families life before. But I do think Drug Co. are about money! Its a Very Big Business. With that said, so are Vitamin Co, but in my opinion, they seem more interested in people's health , and there not hitting Drs. up to sell there product.

April

sdivas

April, actually there are drug companies that are monitoring people through doctors and other sources about these drugs. Not all the drugs react exactly in the same manner in our system. Why some people have reactions while other people don't have reactions seems to remain a mystery for the pharamaceutical scientists, clinicians and pharmacists with some of the drugs. But I think for most of us, we are not fully aware of what is going on behind the scenes in order to blanket statement all drugs and all pharmaceutical companies.

millie123

I think this discussion is important, so I'm bumping it up for newcomers to read. We have to remember that the basic premise behind these drugs is to slow down the activity of the osteoclasts. So this treatment is the equivalent of chemotherapy. Some people tolerate such treatments much better than others.

April995

If none of these awful side effects are not reported to the FDA, they do not have any knowlege/Records of the side effects.
Please call the Fda, your Dr., who has to fill out forms, and does not want to, and the Health department, and report ALL side effects to who ever it takes that can make a differents.

Good point about how these drugs effect some and not others.
That being said, I would think the drug companies can come up with a test to take that would show who would get the side effects and who would not. Like an Allergey test! Or give just a little, and see how people react.
There fore, there is NOT enough testing done on these drugs yet to be prescribed for the general public in my opinion.

Back to the drawing board for the drugs companies, but with so much money at stake, they will just go on, and let so many people suffer, and of course, tell us that a very small percent have side effects, that do not last long. (Boniva told me that! grrr)
Its such a shame its all about the money, and not human Health, and Wellness..

Take Care, & be kind to your selfs,
April

sdivas

raindancer, thank you for your reply which puts the subject matter in perspective. There are puzzle pieces missing about the effects of any of the drugs and unfortunately some people are paying a high price. Are these side effects due to inflammation, our immune system, other health conditions that somehow interfere with the medication? I have so many questions that have not been answered about each one of the osteoporosis drugs that I think only time and and additional research will answer. There are so many details that are left out of the posts, and some health details that should remain private and not shared on the community, but meanwhile, people that may be helped by the drug are naturally concerned after reading these posts. Sandi

bettyrenshaw

NO,

YOU HAVE RECOURSE,

AND WITH DRINKING LOTS OF FLUID/ WATER YOU SHOULD START WAShING THE RESIDUE of the drug FROM YOUR BODY. USING ANTOIXIDANTS A,C,D,E, COQ 10==eat anti inflamatory foods.


get your doctors records on what and when you started the drug and its pattern of damage and your sickness --as completely as you can collectl

LET OTHERS HELP YOU TO GET BACK YOUR HEALTH==YOU CAN ACCELERATE THAT RECOVERY==

AND BEGIN NOW TO FIND BEST LAWYER AND YOUR BEST FRIEND TO GO WITH Y0U TO SEE THEM..


READ WHAT I have pulled up on law suit. follow it. get the best atty you know---any of them will take it because you are in line for big money--- and the atty too. they can charge you 30% but dont be easy,, sign them up for 20 or less because they will be handing it over to the national firms that will be doing the work. and they will take big cut.....I WOULD NAME FDA TOO.. BUT===NOT YOUR ENDOC AND PRIMARY.THEY WILL BE YOR WITNESSES.

.i did not read this...just rushed it to you., in case you have not all ready started. --get your best friend and get onto the best lawyer you can find. someone who is doing lawsuits.........


Reclast-Lawsuit >
Reclast Lawsuit

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If you or a loved one are in need of legal assistance concerning Reclast Lawsuit you should get a lawyer on your side immediately. You will pay no attorney fees unless you win your case.

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Reclast Lawsuit Information

Reclast is the brand name for zoledronic acid, a medication that is used to treat pre-osteoporosis conditions in both men and women. Manufactured by Novartis, it was approved by the FDA in June of 2007 for use as a one-time, yearly treatment to be given by injection on an annual basis. More recently on June 3 of 2009 approval was given for a form of Reclast for which treatment requires an injection just once every two years.

On the Market for Two Years

In the two years since its introduction this drug has been given to at least 500,000 patients worldwide. It is on the market in eighty countries, marketed in Europe under the name Aclasta. The FDA has given its approval for use on a biennial basis despite the fact that since its approval in 2007, Reclast has been associated with acute kidney problems in a number of patients.

Dangerous for Patients who may have Renal Problems

Recently Novartis changed the warning information packaged with the drug to include the possibility of acute renal failure. Added to the information for medical professionals were the suggestions that the drug be infused over a period of at least five minutes; that patients with a history of renal impairment not be given the drug, and that patient monitoring for creatinine be included in the treatment process. Serum creatinine plays an active role in acute renal failure; patients with a history of kidney problems or with certain creatinine levels should not be treated with Reclast, according to its manufacturer.

Seven Fatalities in Two Years

Although the number of post-marketing reports linking Reclast to acute renal failure has been relatively small, seven of those occurrences have been fatal. If you or a relative is being treated for an osteoporotic condition with this medication and has suffered severed side effects, you should consider consulting a legal expert in dangerous medications as well as seeking additional medical help.
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clair12571

hi.
i had a biphosphonate infusion in july this year after my surgery was cancelled due to the lack of time needed to do my surgery also to slow down bone renewal as it then lessons bleeding during surgery.
i was not told of any side effects at the time of the infusion & after reading a few horror stories with regards to infusions only went ahead with it on the basis that it was infused over 4hrs & not the 2hrs which i was informed is more painful. i was a bit worried about the infusion as my body cannot tolerate artificial iron & blood transfusions take 3x the usaul time for my body to accept other peoples blood.
anyway the infusion was set up at midday & by 6.30pm still had a third of the infusion left to go . i rang my sis who being a qualified nurse told me to open the drip up by a few notches which sped it up & we eventually left the hospital just before 9pm.
as soon as the infusion got into my body i started to feel unwell, had flu like symptoms, my joints hurt like hell & my bone pain inreased badly. i also felt exhausted during it & i still do to the point i no longer enjoy life. i have FD (fibrous dysplasia) of the pelvic bone along with a tumour in the bone which comes with the fd.
i was told the symptoms would subside in 2-3 weeks well it's now november & the pain is still terrible & the joint pain has targeted the small arthrits sites i have but hadn't been a problem beforehand.
the weekend just gone my husband & i attended our first fd meeting here in the uk & met other sufferers of fd & a medical expert who actually reaserches as well as helps treat the symptoms of the fd, there is no cure. well considering all the fd sufferers there have all had biphosphonates in differant forms the feedback was all the same, the effects of these drugs are quite nasty & i will never ever have another biphosphonate drug again.
when i told the dr the problems of my fd & the pain, disability etc & that i have other painful areas in my body but nobody would show me my bone scan & that i feel i have it in other bones we discussed the history of my pain from childhood to present day.
he comfirmed what i had thought that i have it in my sacrium bones & my femur & probably my ribs too.
this is were the infusion came into it. where i'd had the infusion the sacrium bones in my spine are now rubbing together & there is movement there which there shouldn't be THIS HAS BEEN CAUSED BY THE BIPHOSPHONATE ! NO DOUBT ABOUT IT. so now i either put up with the pain untill the drug is out of my system which should be july 2010 though the pain may never go or the safer more sensible option is to have that area of my spine either pinned of cemented to stop the movement which is causing the severe pain since the infusion. having the spine cemented will cause lack of flexibility but will ease the pain back to what it was before the infusion also, it will stop the risk of my spinal cord being damaged if the bones catch it. i keep having loss of sensation in my legs when i'm sat or laid in certain positions & i thought it was probably due to nerve involvement but my nerve pain involvement is differant to the loss of feeling in my legs.
before the meeting i had never met another fd sufferer so it was a relief to no longer feel alone with it but another member i met has the same problem as myself except hers is at the top of the spine where the spine meets the head & the spinal cord meets the brain. this lady has had to have special screws plates & bolts fixed to her bones in her neck & top of her spine to stop any stress fractures in her neck as if this happens it will break her neck & damage her spinal cord. since her infusions the bones have shrunk and the movent in her neck & spine have returned so she will have to under go surgery to secure the site again. very scarey.
the infusions are given over 3 months 1 a month.
the 1st reaches all the bones which is why the jaw bone becomes a problem, shrinkage of the bones & gums, 2nd infusion reaches the problem areas more than the rest of the skeleton & the 3rd goes straight to the bones that need it. apparently with each infusion the symptoms lesson though every one at the meeting that have had all 3 disagree.
i know i have gone on a bit in my reply i wanted to give you the overall picture of what this drug can do in the way of damage to the body. the only good thing with my infusion is that it's basically comfirmed that i do have other areas of fd in my body & in the places i suspected due the pain. i also have a curveture to my lower spine which is a symptom too to the fd being in my spine.
and yes this drug has caused me too to feel like i just exist as it has ruined what bit of enjoyment i had in my life.
i am not saying it is the same for everyone who has this drug but for people like myself & idah & others it has effected it does feel like it has ruined our lives.
i hope my story helps others consider very carefuly before agreeing to it & to ask any questions about side effects as you have the right to know.
clair

raindancer

Hi Sandi,

You raise a very interesting point, I have thought about that myself many times, how is it that what helps some of us hurts some of us....well here a few of my conclusions for what they are worth.

Yes, there is something "different" going on. WE are the "different". Why do some of us have allergies and some of us don't..why do some of us gain weight easily and a few lucky ones eat every thing is sight and barely maintain , why do some of us have overactive immune systems and have bodies that attack themselves and some of us get every bug that comes along?

Because in part our genetic makeup predisposes some of us to one weakness and some to another.
Partly because of our environment which can be harmful to our health and probably in part of how we maintain ourselves.

Partly because of the health providers which we choose and sometimes due to location, finances and etc are chosen for us.

So many issues enter into the health of each of us that there can never be a guaranteed path to health for any of us, we just have to study and learn and try to make the best decision for ourselves.

The best thing about this group is all the help, the shared links and learning and support and friendships that have come about because of one thing that we all share in common, and that is bone loss.

heid

I just finished two years of Forteo and am awaiting my Dexa Scan results with a new doctor. My Forteo/ endocrinologist doctor is moving out of town. The new doctor has had good results with Reclast but I'm not sure if my insurance will cover it. I thought Reclast ran about $1500 for an annual infusion. I will let this list know what my doctor says after I meet with him later in Nov. What bothers me most is the Reclast is a bisphosphonate as best I can tell. I had to use Forteo BECAUSE 6 years of Actonel (a bisphosphonate) didn't work! Scary stuff. Michele

zookeptor

I am in the same boat you are. I have been told I should do Reclast and am simply researching it. Now I don't know what to do after reading these horror stories. I have wondered the same thing. Are most people on this site because they have had a bad experience? What have you heard back in response to your questions?

zookeptor

Hi. I am replying to your statement because you said you just finished your first year of forteo. I REALLY want to pick your brain on this because I am leaning on going with Forteo instead of the Reclast. Having something in your body that you can't quit scares me. Have you had weight gain with Forteo? Have you had bone replacement with Forteo? Any pains or anything else I need to know about? My email is zookeptor@yahoo.com Please contact me so I can chat with you regarding this. Thank you.

sdivas

faye55. there are many people that are helped by the drugs and don't have the side effects that we are reading about. What no clinician seems able to answer is why some people are having such serious reactions while other people like yourself are not having any side effects? I think there are many questions that are not answered. There must be something else going on that is making the difference.

faye55

i know i'll be last in a long list here . i had reclast in march and have had no side effects. i will happily get it again. i'm so sorry for people who had bad results.

Caleigh

So very sorry to hear that you are suffering because of a drug which was suppose to help us. I will not take any type of bisphosphonates regardless of what my Doctor tells me to do. I have had terrible experiences with fosamax and actonel which I took on a weekly basis and can't imagine how much I would suffer if I took one of the 'Yearly" infusions. Please take care and know that we are all praying for you.

Isaac

Thank you for your imput. I agree completely. The drug companies are making money on human suffering.

My doctor (after he perscribed fosomax) told me the side effects might be: mild stomach ache and little bone pain (like growing pains). He insisted that I take the drug and when I said I would rather take a natural approach - he replied: "it's natural to break a hip, too". The doctors intimidate us into taking the drugs!

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