RECLAST

• By Lela52
• Reply 3700170
• January 12, 2013 at 8:00 pm
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Hi lynnesusan,
Type Reclast in the upper right corner of this page and press find it and you will get a lot of personal experiences to read.
I'm thankful that I tried weekly oral bisphosphonates first, because I could stop taking these when it turned out that I reacted with bad side effects. So personally I haven't and I never will try the very potent once a year Reclast !
Please take your time, read a lot until you feel informed and comfortable before you decide what to do for your bones.

If it is helpful to you I can also recommend a book, "The Whole-Body approach to Osteoporosis".
That book that has helped me understand so much more, in depth, about Osteoporosis and about tests to find out causes of bone loss and different ways of treating it/turn it around and how to monitor progress. The author Dr Keith McCormick, DC, has his own experience with osteoporosis, diagnosed at age 45, he has had a lot of fractures but now he is not fracturing any more – today he is very active.
He actually lives and has his practice in the same state as you ! Good luck to you whatever you decide.

• By lynnesusan
• Reply 3700472 · In reply to 3700170 by Lela52
• January 12, 2013 at 10:30 pm
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Thank you so much Lela52. I will get the book for sure and TAKE THE TIME to investigate my options!

• By Ingavan
• Reply 3701441
• January 13, 2013 at 10:57 am
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I lost volumes of hair on Fasomax and Actonel. Now the dr. Says to do Reclast or Prolia . If it killed my hair follicle war other harm us it doing. Has anyone else lost hai eith the biphosomates?

• By Lorrieanne
• Reply 3702917
• January 13, 2013 at 8:17 pm
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I have never tried reclast, and would do alot of research before ever considering it! Actually, after reading on this site, I would never ever touch reclast, so I guess what I am saying is be careful! It lasts for a year... so if you have problems, you are pretty much stuck with them. There are lots of discussions here about it. Lots of women left w/ permanent issues. I would take my time and read them all!
Good luck on your decision!

• By lynnesusan
• Reply 3703070 · In reply to 3702917 by Lorrieanne
• January 13, 2013 at 9:40 pm
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OK. I thank you Lorrieanne. I will take the time for sure.

• By CubbieFan2308
• Reply 3703203
• January 13, 2013 at 10:43 pm
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I took my one & only dose of Reclast on May 27, 2010, and since that time I have been in the hospital more times than I ever have in my life, which is saying quite a lot.

After that fateful day, my temperature shot up to 104 and I had bone pain like I had never known, which since I have had over 70 bone surgeries including 3 back ones, so that means something and my normal temperature runs around 97.3 and this lasted about a week. Next about 2 weeks later I awoke with a hard lump on my wrist that was quite painful and hadn't been there when I went to bed. When I went to the doctor 2 weeks later I had 3 more of them on my hands and I asked him what they were. He said they were bone spurs. He said they form on the nerve endings and that is what makes them so painful. To date I have between 80-90 all over my body, including on my hands, my feet, my ribs, my elbows, my back including my tailbone which makes it extremely difficult to sit, lay, or do much of anything. (I only weigh 95 pounds so my tailbone is extremely close to the skin and with the bone spur there I have problems with ulcers on the skin from it rubbing.) I also have them in my lungs.

About a month post Reclast infusion, I was sitting at home with my husband. Suddenly I experienced a tightening of my throat. Then my heart began to race and it felt like an elephant was sitting on my chest. Then I became extremely nauseated. Then I didn't know which end to put on the toilet as it was coming out both ends. This whole process lasted about 15 minutes. I scared the heck out of my husband and he begged and pleaded to take me to the hospital or dial 911. I told him if it ever occurred again then I would go. About 2 nights later I was eating those words. He took me to the ER and they said I had experienced an atrial fibrilation attack. When I got home I decided to look up the side effects of Reclast and lo and behold were not only the bone spurs, but also the atrial fibrilation attacks. It said that it was quite common to occur one month post Reclast infusion. I also found out that I
never should have been given the drug in the first place because of the stomach surgeries that I had had. But for me the fun had
just begun. I was referred to a cardiologist who attempted a cardiac ablation (shocked my heart to try to get it back into correct time.) I had several other side effects pop up over the next couple years, including my immune system forever becoming compromised (I have been diagnosed with a rare disease called cyclic leucopenia, which basically means that my body has no way of fighting off infection) so I have to get my blood tested every week for the rest of my life and get shots when my blood levels are low as last year alone I was hospitalized for pneumonia 9 times, and treated at home a couple of times as well. For some reason the Reclast altered my immune system makeup is what my blood specialist said in simple terms. I also have issues with gastritis and have been seen at Mayo Clinic recently. They are talking about restructuring my stomach as I keep on throwing up in my sleep and some times it gets aspirated and can contribute to the pneumonia. I find out on the 18th if this will happen. One very serious consequence that I have been dealing with is osteonecrosis of the jaw. This is a horrible side effect and is no fun to deal with.

You can search my name and you can read all about me. This is just a synapsis of my story. There is so much more. I don't want to overwhelm you. All Incantation do is tell you my experience and what I know. In September of 2011, I was one of 16 people that was selected to speak before the FDA panel in Washington, D.C. Afterwards a blackbox warning was issued, which was a far cry from what we wanted, which was to have the drug removed from the market. One of the warnings was for atypical femur fractures. This occurs because the Reclast forms a shell of a bone rather than good bone. Consequently when people are going to take a step, they are falling in pain as their leg breaks in a spiral fashion, which takes months and months of recovery, and often times, once they recovervfrom this, their other leg breaks in much the same manner. When I was in Washington, D.C. there was a group of 120 women who were there that had had this occur to them. I listened to several tell their stories. It was gut wrenching.

One story that is on this site you may want to read. It is "Death by Reclast: Janet's Story". It is written by a friend of mine who lost his wife to Reclast. It is very well written and definitely worth reading.

There are many people on this site that have had positive experiences with Reclast. They will quote you statistics,etc. One thing I would keep in mind when it comes to your health is that with Reclast that once it is in your system, there is no way to get it out. If there was, many of us would have done it by now. The other thing to keep in mind is no matter what the odds are, it is kind of like playing Russian Roulette. It is all in a matter of how lucky you feel. Believe me, if I had it all to do over again, I never would have taken it. But my doctor never even gave me all the facts. He never even read the contraindications on the Reclast. He just went by the salesman. So my odds weren't even explained right to me at the offshoot. But you are doing the right thing in asking the questions first. Best of luck to you and if you have any other questions for me I will be happy to answer them.

Sincerely,

CubbieFan2308

• By PlantsAndYarn
• Reply 3703734
• January 14, 2013 at 7:32 am
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I surely would not try reclast. Like Cubbie said it is like playing Russian roulette. Sure there are people who have not had any problems, but there are those who had serious, life-altering problems, or death after just 1 infusion. There are also those who had no problems with the first one, but had serious problems or died after the second or third. These are people who did not have health issues other than OP. The drug company admits that it can cause kidney failure and the FDA is researching the problems it can cause to your heart. How well does your body handle drugs? I know my body doesn't react to drugs well, even when the dose is adjusted for my size & weight. The same size dose of reclast is given to everyone regardless of their height or weight. So a man who is 6 ft tall & weighs 200 lbs gets the same dose as a woman who is 5 ft. tall & weighs 100 lbs. If you must try a traditional medication, then I would try something else first. Even then I, personally, would stay away from the infusion medications.

• By lynnesusan
• Reply 3704078
• January 14, 2013 at 9:42 am
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Thank you Plantsandyarn. So glad I asked about Reclast. I will stay away. I honestly want to take the time even though I am a -3.5 to research, read and question all of this STUFF! I was on the page "More Success Stories" and felt some hope with following a more natural path. I want to read more about strontium citrate and the NOW Full Spectrum Mineral Caps. I need to find a doctor in Boston that will work with me on trying to improve my bone health through natural methods and not all the high risk drugs. I may ask my internist first. She was not very informative. Sent me to an Endo that is pushing Fosamax and Evista of course. I liked your last sentence..."if you must try a traditional medication, then I would try something else first"... Must I try traditional meds? I am starting to think I don't. Thank you.

• By lynnesusan
• Reply 3704099 · In reply to 3703203 by CubbieFan2308
• January 14, 2013 at 9:47 am
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Dear Cubbyfan,
OMG. I hope your health is improving every day. I am listening to ALL of you and so appreciate your information. Never will I take Reclast. Never. Thank you.
Lynnesusan

• By lynnesusan
• Reply 3704562
• January 14, 2013 at 12:23 pm
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Plantsandyarn, I am going to post a discussion with regards to AlgaeCal Plus and Strontium Boost (Citrate). I have read some positive things and LOVE that it is a natural supplement. Thoughts?

• By MissPDJ
• Reply 3704583
• January 14, 2013 at 12:29 pm
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I also feel that the day I had my first infusion of Reclast was the biggest mistake of my life!! Like you Cubbyfan I was never given any information with regard to side effects appart from being told that I needed to make sure my dental work was up to date (which it was as I had just finished a very expensive complete overhaul of my teeth) and that for a day or two I may experience flu like symptoms. If only!!!!!! I was also told that I didn't have the luxury of time to wait for the NHS or for the oral bisphosphonates to work. So I made the fatal mistake of believing 'Doctor knows best' and paid for the pleasure!!!! You can read my story, or the short version of my story on here. I started a discussion on bisphosphonates and teeth problems. My teeth are not the only side effect I am suffering, seems that day by day I read things on here and realise that I have not been connecting my problems with the bisphosphonates, like the loss of hair...... I suffer with psoriasis so had put the hair loss down to that but realise today that I have had psoriasis for 12 years and it's only been the last two years that I have been complaining about hair loss...... is it the psoriasis or the bisphosphonates?

Lynnesusan I am so pleased for you that you had the sense to come on here and do your research. I hope that you find a healthy alternative without the nasty side effects. Good luck with your progress.

CubbieFan my heart goes out to you..... I wouldn't wish this nightmare on my worst enemy!!! You are an inspirational woman to fight against these drugs as you do. My prayers are with you.

Regards
Pauline

• By CubbieFan2308
• Reply 3704717
• January 14, 2013 at 1:07 pm
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Lynnesusan & MISSPDJ:


I am sooo happy to hear that you are not going to take Reclast Lynnesusan! Thank you for your good wishes! It makes me feel good when someone chooses not to take Reclast after I have shared my story. Ultimately the decision is always up to you, no matter how much I would like to make it for you. But I can't. So thank you. You won't be sorry. I sure wish I could turn back the clock and choose differently. My life would be so different than it is today.

MISSPDJ:

Thank you for your kind concern and prayers. I really appreciate them. I am sorry about what you are going through as well. I do understand the dental issues. I have the osteonecrosis of the jaw that I am dealing with so I know how difficult it can be. If you ever need someone to talk to, please don't hesitate to contact me

Sincerely,

CubbieFan2308

ever need someone to talk to

• By lynnesusan
• Reply 3704725
• January 14, 2013 at 1:09 pm
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Thanks Pauline. I need to read some more but I am leaning towards trying the ALGAE CAL PLUS paired with STRONTIUM BOOST. Spoke with my Doctor today and he never heard of it. He wanted to know if I wanted the prescription for Evista or not, he was busy and didn't have time for my questions. OUCH.

• By CubbieFan2308
• Reply 3704730
• January 14, 2013 at 1:10 pm
• Report post

Lynnesusan:

You may want to ask to be referred to a rheumatologist as they usually are the best informed on osteoporosis issues. Just a suggestion....

Sincerely,

CubbieFan2308

• By lynnesusan
• Reply 3704882
• January 14, 2013 at 1:49 pm
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Thanks CubbieFan, I will do that.

• By lilypads
• Reply 3704993
• January 14, 2013 at 2:34 pm
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Here are some links to discussions by those who have suffered the most from Reclast:

http://www.inspire.com/CubbieFan2308/journal/where-to-begin-8/

http://www.inspire.com/Mariah41/journal/reclast-the-nightmare-continues/

http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/m ember-interview-on-reclast-and-fda-testimony/

http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/r eclast-and-cataracts-when-will-this-end/

And here is an interview with a doctor who works for the FDA. After reading this, you will understand that our government does NOT protect us from dangerous drugs.

http://www.naturalnews.com/011401_Dr_David_Graham_the_FDA.html

My suggestion: take your time, do your own research, and make your decision only when you feel completely comfortable with it.

Here are some success stories from people who did not use drugs:

http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/s till-more-sucess-stories/

• By MissPDJ
• Reply 3705033
• January 14, 2013 at 2:45 pm
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Lynnesusan, where are you based.... UK? It seams to me that the UK is so far behind America and our health care system makes it very difficult for us to get the right people to look after us properly. I am under the care of rheumatology but I am concerned that they don't do any blood work on me apart from calcium and Vit D levels. They never give me any results!! I hope you have more luck with your care team :-)

CubbieFan, what treatment are you on for osteonecrosis of the jaw? I have a gaping hole in my mouth where my last extraction was (Dec 14th) I am so worried about this and wondered if there is something I could take to try to ward of osteonecrosis of the jaw. Have got to have another extraction once this one heals. Last two extractions took a year to heal. At the moment I am just taking my calcium and vitamin D. I know that I probably should be taking other things but am scared to start on anything while this damned zolendronic acid is still in my system incase they react against each other and is there any point..... from what I understand the infusion I had will block me making any new bone until it is out of my system. How long will this take? What are your views on Strontium?

Thank you for getting back to me so quickly on here...... it can sometimes feel that you are in a dark hole on your own so helps to talk to others who understand.

Regards
Pauline

• By lilypads
• Reply 3705140
• January 14, 2013 at 3:23 pm
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http://www.dentalaegis.com/cced/2011/10/bridging-the-gap-between-osteoporos is-and-osteonecrosis-of-the-jaw-preventing-and-treating-bronj-with-mk4

Pauline, Here's an article that may help with ONJ.

• By Lorrieanne
• Reply 3705316 · In reply to 3704725 by lynnesusan
• January 14, 2013 at 4:11 pm
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lynnesusan, Sadly, most drs have not heard of strontium or any natural treatments. They are led by the pharmaceutical companies so only know about those treatments. I am on my third MD and he is Holistic, and he knows about strontium, which I take. He is also the only one who understood about Vitamin K2, the prior drs said to stop taking any Vit K immediately. I am finally comfortable with my physician! I was basically treating myself before him, like so many people here! But, thanks to this site, and the wonderful people willing to share- like Cubbiefan and Lilypads- I have been doing a pretty good job!
Good luck to you!

• By lynnesusan
• Reply 3705440 · In reply to 3705316 by Lorrieanne
• January 14, 2013 at 4:52 pm
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Lorrieanne...I am looking for a Holistic doctor. I am in the USA in Boston, MA. If anyone has any recommendations please send my way! Lorrieanne is your Holistic doctor also an MD? I am looking into NATUROPATHIC Medical Services. I found one that intrigued me, and may investigate. I read up on their qualifications and was very impressed. I don't want to have to "teach" my doctor about alternatives...I want them to KNOW about them already.

I did order a bottle of AlgaeCal Plus Calcium Supplement and Strontium Boost that is paired together for bone health. I also stopped by my Physical Therapist from a past experience and will see her on Thursday to get a good line on what exercises will be good for me...what is bad for me.

I need to read about K2 because I don't understand the importance of it yet. I do see that on the Viactive Calcium/ D supplement that I take.. it is listed. Grateful to all of you for your information. So grateful.