Reclast has ruined my health and my life

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.

By nobonesaboutit
Posted October 28, 2008 at 3:03 pm
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Thank you idah for your discussion. I will be praying for you. I'm not terribly religious but when my Dr ordered Reclast for me, I tried 3 times to set it up with the clinic he wanted me to get it at. Each time I was given a different story as to why the clinic hadn't called to schedule it with me. I finally gave up-seemed like God just was always standing in the way of me getting it so I finally listened. since then, there have been so many posts on this site about horrible side effects others have had and the Drs still keep saying it's so rare. I'm not believing it anymore, I'm believing you and the others who have the actual experience. The pharmaceutical companies should not be able to get away with this experimentation.
Know you're being thought of with sincere wishes for your recovery.

By idah
Posted October 28, 2008 at 11:45 pm
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To nobonesaboutit:

Thank you so much for your comforting words. I think it's important for people to really know how "benigne bishosphonates" are destroying so many people's health, and--in some cases--also ruined them financially. I hope and pray that someday, somehow, someone will be held accountable for all the suffering "Reclast the Benigne" has caused its victims. I am telling my story online and in person because I want to inform others so they may be spared what has happened to me.

By magi
Posted October 29, 2008 at 4:40 am
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Dear Idah

I am so sorry for you but for me I must say I benefited from it and thank God for it since I was -3.8 and now I am -1.6 It was recommended for me by my German Professor and I am supposed to get another infusion next January , but after reading your message I am thinking of not taking it. The reason why I took it was that I was in terrible state If I cough or sneeze I would break my back and you can the imagine the pain. Now i suffer only when I get up in the morning and then during the day it vanishes. I have to say that I swim and walk as recommended by the doctor and maybe this also contributed in the improvement that happened in my case. so be patient and you will be better, I wish you all the best of luck. magi

By Gloucester
Posted October 29, 2008 at 4:07 pm
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Dear Idah:

I was shocked to read your report and then read the later one where the person did fine. They are night and day. How can that be?? I know it is a little late to ask, but why didn't you take another type of biophosphonate?
The problem with taking a drug that is administered once a year is that one dose is it. If there are problems you can't stop taking it because it's there for a year whether you like it or not. After January 2009, will the drug be out of you system? I would research that point. That's not very far away. If so, you may return to your former self, get your job back or get another one. Gloucester

By idah
Posted October 29, 2008 at 5:08 pm
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Dear Magi, Gloucester and all others:

I had been on oral bishosphonate and the spray calcitonin, on and off, since 2004. One hurt my stomach and the spray increased my sinus and migraine problems. The doctor "strongly" recommended the yearly infusion of Reclast; he stated it was better than Boniva, which is also given by infusion, every three months. I told the doctor about my medical history and concern about possible side effects. He reassured me that "Reclast" basically was a very safe drug with very few and non-harmful side effects. Unfortunately, my fears proved right. perhaps it has to do with my small size (5"1, 1110 lbs). Perhaps body weight and size are a factor and, as far as I know, this has not been a factor in any of the research studies. I will continue to write about my experience because there is another side to the " Benigne Reclast" and I would also encourage people to read on the short and long term risks of taking Reclast or any other bone density drug.

By idah
Posted October 29, 2008 at 5:13 pm
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I forgot to add that biphosphonates have a half life of ten years--therefore--they remain in the body for a long time. Hopefully, the side effects will diminish as less of the drug remains in the body.

By KMFDallas
Posted October 29, 2008 at 8:57 pm
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The Center for Justice and Democracy has just released a report called The Bitterest Pill – How Drug Companies Fail to Protect Women and How Lawsuits Save Their Lives.

It shows how important lawsuits have been in protecting women from unsafe drugs and how women, in particular, would suffer should the U.S. Supreme Court give the drug industry complete immunity from lawsuits. The Court will hear arguments in the case next week

Below are links to a news release and the report itself. It makes for very interesting reading. DES is used as one of the examples for why consumers should be allowed to sue drug makers.

News Release: http://centerjd.org/archives/press/2008/081029.php
News Release: - PDF format: http://centerjd.org/archives/press/2008/BitterestPillRelF.pdf
Report: http://centerjd.org/archives/studies/BitterestPill(f).pdf <http://centerjd.org/archives/studies/BitterestPill%28f%29.pdf>
Executive Summary: http://centerjd.org/archives/studies/BitterestPillExSummF.pdf

By heid
Posted October 29, 2008 at 9:26 pm
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I took premarin from age 36 to 56 to prevent osteoporosis. It didn't work. By the time my osteoporosis was diagnosed I had already lost 2" in height. After almost 6 years of Actonel (weekly) and two of those on Evista, my bone density continued to drop into dangerous levels. I have now completed my first year of Forteo and still more bone loss. I have another Dexa in January; I can only HOPE AND PRAY that I have at least stabilzed. Thank you for warning others about your experienc with Reclast. I hope you get better soon. Michele

By nobonesaboutit
Posted October 30, 2008 at 11:41 am
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Dear KMFDallas,
You would think all health care workers would be behind the legislation to "stop these frivilous lawsuits" as they call them. In my previous life I was a RN and really believe if that legislation goes thru, it gives Drs who really don't care, less reason to care about their actions, and the drug companies-well we already see how bold they are. They figure the everyday peon doesn't have enough money to take them on. Imagine if they had the government backing them saying it's OK, you can't be sued. I realize there are ambulance-chaser lawyers who advertise on TV, but for the most part, people who are hurt enough to do a lawsuit, really deserve some kind of restitution.

By Southernlady
Posted October 31, 2008 at 4:03 pm
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I am so sorry you are going through this......I just will not try medicine unless its been out a long time...........and I looked at all the reviews and chose Evista.........I hope women will heed this warning...I am going to pray for your healing in your body.......I never take one doctors opinion....I saw three doctors when I was diagnosed with Osteoporosis in 2006.........and I chose the medicine........

By Southernlady
Posted October 31, 2008 at 4:05 pm
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You need to call the FDA........they will post your complaints.....and take a look at it........look up I guess fda.gov Do not stop until someone does something for you.

By knightshotter
Posted November 2, 2008 at 12:04 am
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Reclast is a once per year infusion. I personally didn't have side effects attributed to reclast. After the fact, I can say I suffered from severe anorexia based on severe nausea and vomiting and an inability to eat much food. I have lost 23 lbs since my reclast infusion in June. I had not attributed this and other medical problems to reclast...Now I'm not so sure.

By JilleWhite
Posted November 2, 2008 at 4:03 pm
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Idah ~ I read your post and immediately prayed for you. My heart aches at what you are going thru. I refuse Reclast partly because of experiences like yours that I'm reading about, but also because I've been on the other biophosphonates and have had jaw problems for years. I am too scared to do another...
I pray healing not just physically but emotionally as well from this...
Jill

By MARANATHA
Posted November 10, 2008 at 10:10 am
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I FEEL SO SORRY FOR YOU AS I AM TOO HAVING AWFUL SIDE EFFECTS. I VOMITED SEVERELY THE NIGHT I HAD THE IV AND HAD TO GO TO URGENT CARE FOR DEHYDRATION. THEY GAVE ME AN IV OF SALINE SOLUTION. MY HEART RATE WAS HIGH. I HAD SEVERE PAIN IN MY BONES, MUSCLES, AND JOINTS AND STILL DO. MY LEFT EAR IS PAINFUL. MY DENTIST CALLED MANUFACATURER TO ASK ABOUT DENTAL SURGERY AND DETERMINED IT WAS OK. WELL IT WASN'T. I WAS SUPPOSED TO HAVE A KNEE RPLACEMENT LAST FRIDAY AND THE SURGEON CANCELED. WHEN I CALLED NOVARTIS, THE MANUFACTURER, ALL THEY HAVE IS SOMEONE WHO READS THE PAPER YOU GET AT THE TIME OF IV. NO HELP AT ALL. AS FAR AS I'M CONCERNED, THEDRUG SHOULD HAVE NEVER BEEN APPROVED!!

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