Hi There,

Is anyone taking the drug Boniva for osteoporisis? I'm in a clinical study for a once a month dosage of Boniva and have found out that it is already available in a once a week drug. Would like to hear from you about side affects.

Sorry Gran, never heard of it. If you are in a clinical trial, then I guess they want to hear the side effects from you. Am I right?
Have you tried vit D and calcium? I've read that the vit D increases the calcium absorption incredibly, yet doctors don't tell us that.

Gran, I would guess that they don't want to mess up the trial by telling you the possible side effects, but I think that they should tell you that up front.

According to the US FDA, the now known side effects are:

Who should not take Boniva?

You should not take Boniva if you:

• have low blood calcium (hypocalcemia).
• cannot sit or stand up for at least 1 hour (60 minutes) after taking Boniva.
• have kidneys that work very poorly.
• are allergic to ibandronate sodium or any of the other ingredients of Boniva.

Special Warnings:

Boniva may cause serious problems in the stomach and the esophagus (the tube that connects your mouth and stomach) such as trouble swallowing, heartburn, and ulcers.

What should I tell my health care provider?

Tell your health care provider if you:

• are pregnant or planning to become pregnant.
• are breast-feeding.
• have swallowing problems or other problems with your esophagus (the tube that connects your mouth and stomach).
• have kidney problems.

Tell your health care provider about all the medicines you take including prescription and non-prescription medicines, vitamins and supplements. Some medicines, especially certain vitamins, supplements, and antacids can stop Boniva from getting to your bones. This can happen if you take other medicines too close to the time that you take Boniva.

What are some possible side effects of Boniva?

Stop taking Boniva and call your health care provider right away if you have:

• pain or trouble with swallowing
• chest pain
• very bad heartburn or heartburn that does not get better

Boniva may cause:

• pain or trouble swallowing (dysphagia)
• heartburn (esophagitis)
• ulcers in your stomach or esophagus (the tube that connects your mouth and stomach)

Common side effects with Boniva are:

• diarrhea
• pain in extremities (arms or legs)
• upset stomach (dyspepsia)

For more detailed information about Boniva, ask your health care provider or pharmacist.

This info is from the FDA: http://www.fda.gov/cder/consumerinfo/druginfo/boniva.htm

If you have other symptoms, be sure to report them, too.

True - doctors don't tell us that, but read through the Power Surge Recommendations page and you'll see that Power Surge has been telling women that for many years

This info also appears in numerous articles and transcripts on this site.

Without taking vitamin D along with calcium, it's almost pointless taking calcium. Vitamin D is required for the proper absorption of calcium.

Boniva Side Effects

A full page ad for Boniva in today's paper indicates additional side effects:

"...pain in the arms and legs"
"If you develop severe bone, joint and/or muscle pain, contact your healthcare provider."

Could it be that Roche GlaxoSmithKline has heard the women with these symptoms taking Fosamax and decided to acknowledge them??

Cesca

I took this once a month meds in June 05 I had a terrible reaction and was sick for at least ten days, ended up in the ER two diff. times and lost 18 lbs. (gained this back when I was given fluids. I have not taken it again and I am not takings any meds for this now.

Thanks for your reply. What effects did the boniva have on you?

It was such a relief to read your information. I took my first dosage of boniva last Thursday (today is Monday). Friday I had severe leg pain - it felt as though I had worked out incredibly hard the day before.

The next morning the pain was severe and it had spread up to my lower back which made it hard to breath normally. After reviewing my package instructions I figured out that I should be able to take Tylenol. I took 2 xtra-strength and felt better. Since it was a Saturday I checked in with the pharmacist instead of my doctor and she confirmed that one could take Tylenol if they were on Boniva. The pain was pretty bad yesterday too. This may sound strange but the pain seems to be going from bottom of my body and moving up. Today the pain is much better.

Hi to everyone,

I spoke to a doctor about osteo and he said there was no way of measuring calcium or magnesium in the body so how would one know whether you are lacking these items? I would appreciate your input

Flying Fairy

OK...I took Boniva for the first time on Sunday, and I don't know if it was the medication, but I kept getting a weird taste in my mouth, and I still am having abdominal pains..I also had to go to the bathroom several times. Has anyone experienced this too? I was on Miacalcin nasal spray, but my internist said that that medication doesn't build back bone, so he wanted me to take Boniva...I am a bit scared now to take it if this is what is happening.

I have been taking weekly Fosamax for years. My gyno gave me a sample of Boniva. I took it and have not had any bad side effects that I know of. If my insurance company covered it, I would use it. Just once a month is very appealing to me.

Hello, I am new to message boards. I took one 150mg (once-monthly dose) of Boniva on Oct. 3, 2005 and about two weeks later began experiencing severe bone, joint, and muscle pain in both my shoulders. This occurred spontaneously, without any truma or injury.

I didn't take any more Boniva, but I still have the severe pain together with limitation of motion, mostly in my left shoulder although I am right-handed. This has actually become worse instead of better, and has migrated into my right collar bone area and neck.

I have done a lot of research, together with e-mails and telephone chats with personnel at Roche, who have confirmed that these symptoms can be caused by Boniva. Boniva is a bisphosphonate, such as Fosamax and Actonel. My research indicates that "these anti-osteoporosis drugs remain in the body for decades, deposited within the bones." and "Hundreds of women using Fosamax and Actonel report on patient websites that they are experiencing chronic, often severe, joint and bone pain."

The FDA reports:
"Musculoskeletal Pain
In postmarketing experience, severe and occasionally incapacitating bone,
joint, and/or muscle pain has been reported in patients taking
bisphosphonates that are approved for the prevention and treatment of
osteoporosis (see ADVERSE REACTIONS ). However, such reports have been
infrequent. This category of drugs include BONIVA (ibandronate sodium)
Tablets. Most of the patients were postmenopausal women. The time to onset
of symptoms varied from one day to several months after starting the drug.
Most patients had relief of symptoms after stopping. A subset had recurrence
of symptoms when rechallenged with the same drug or another bisphosphonate."

I wish I had not taken this medication and highly recommend that others please take the warnings of Adverse Reactions of Boniva seriously.

I am in the midst of my latest 'horror story' with drugs. I took my first Boniva, yesterday, Jan.28 at around 7:30 am. All was well until 8 pm. Then it hit, slight nausea, extermely urgent diarrhea, generalized muscle pain in my entire back and midriff . The muscle pain intensified to the point that, within 1 hr. I couldn't sit up. I called my doc and she told me this was unusual, but not unheard of. I should take 2 Tylenol and I would have to 'ride it out'. It is now about 30 hrs after taking Boniva. The pain has subsided to the point that I can sit for a while, but moving is still very painful. The areas of pain do migrate, clearing one area and appearing in another.

The insert with the drug indicates flu like symptoms as a potential side effect. I always think of the muscle pain associated with the flu as feeling like 'being run over by a truck'. No more. The flu pain is more like being run over by a bicycle, this is like being run over by a 'steam roller'.

The thought that this could go on, indefinately, is not reasuring.

Dog teacher

Hello Dog Teacher,

(What a lovely name!)

Thank you for your message. I can certainly sympathize with your conditions, because I did encounter similar adverse effects, although they began 2 weeks after taking the one Boniva pill. The gastrointestinal problems went away when I started taking Prilosec again, but the bone/joint/muscle pain and limitation of motion has not quit, even after over three months. Perhaps your problems will go away soon, and that is what we hope. If they do NOT go away, please please let me know, especially if you are able to get a diagnosis of what type of illness/disease is causing your symptoms.

One thing all of us can do is to file a complaint with the FDA. If you wish to do so, let me know and I will furnish the link.

Kindest regards,

momkat

I have 13% bone loss in spine and 4% in hip. My doctor told me 5 years ago I have to start taking Actonel and more recently Boniva. I get the prescriptions but never get them filled. My gut feeling says no. One doctor told me I will be so sorry if I don't take them. I have not heard anyone say anything good about those meds. I wonder how many people have no side effects. I don't know what to do..

To research what others are saying about the drug you are taking or considering taking, go to askapatient.com. Just type in the name of the drug and you will get postings from many people with a complete list of symptoms, side effects, and feelings pro or con on taking the drug.

I really wish people on this site would do some research on strontium. Look up strontium citrate in your search engine, or begin your research by looking up Dr. Hoffman and searching his site by typing in "osteoporosis". He is a well respected doctor in New York. Read what his site has to say about strontium.

Also, you can not rely on a medication to fix all problems. It is really important to do weight bearing exercise and walk.

I have decided against these drugs based on what I have read and researched. It is very important to research what you are taking. For instance none of these drugs creates new bone. In fact, they inhibit the taking away of old bone and the formation of new bone. What they do is put a shield and fill in around old bone. There is some concern that ten years from now bone will be more brittle due to this process.

However, I do understand and respect every person's choices for themselves, and if drugs are the right choice for that person then that is great. Please research though and make educated choices. We can not just believe the drug companies. Unfortunately, doctors don't always have the time to research on their own and must rely on the drug companies for information. I am in no way anti-drugs when needed and feel they do wonderful things and save lives. I take them when needed and traditional medicine is my first choice. However, having read about these drugs and the over prescribing of them (for osteopenia especially which should not be done!), I decided against them. For now I take strontium, calcium with Vitamin D, other needed minerals, and I work out three times a week with weights and walk.

Hope this helps someone! Dor

Bjinsco,

I would like to see you follow that gut instinct about these bisphosphonates. They are bad drugs, as far as I am concerned. I did not fill my Fosamax or my Actonel scripts, but then doctor said "Here is a new pill that you only take once a month (Boniva 150 mg.) and if you are going to have side effects you will have them only once a month". Yes, indeed, that is what he said, and I'm sure he believed that because the sales rep. for the drug company prob. told him that. But of course, NOT TRUE!

Be sure to read Dor's post for some excellent information. Also, the FDA website has the latest labeling information for Boniva, although it is difficult to find it. Please go to http://www.fda.gov/medwatch/SAFETY/2005/Mar_PI/Boniva_PI.pdf.

Kindest regards to all,

Momkat

[font=Arial][size=7]
I began taking my first dose of once a month Boniva in March, 2006. Within one day of taking my first dose of Boniva, I experienced severe aching all over my body including my fingers. No, it was not the flu as I did not have a fever or other symptoms. I took Advil for the pain, but it did not touch it. After one day the pain ended. The rest of the month was uneventful. After the second month, I noticed a bit more achiness on a day to day basis. I took my third dose on May 1st. Since that day, I am progressively getting worse: pain in my knees, ankles, feet, hip. I'm to the point that I can't hardly walk. If I sit and watch a TV show, I can hardly stand up because the pain is so severe. I am taking 8 Advil at a time for the pain, and it doesn't even touch it. Further, I am a rather thin person. Since taking Boniva, I have gained 10 pounds. Also, I usually run a very low blood pressure (80-90/50-60); now my diastolic pressure (the lower number) is running around 80, which is elevated for me. I just have to say that I just don't feel well.

Hello Cherqui, I'm sorry you are having all those problems, some or all of which may be caused by Boniva. I would strongly recommend that you consider discontinuing taking it right away.

Also, I am concerned about the amount of Advil you are taking, which could cause considerable damage to your body if you exceed the recommended dosage, which is (according to one website): "The recommended dosage for Advil® (Ibuprofen 200 mg) is one (1) tablet every four (4) to six (6) hours. You can take another tablet if the pain does not respond to one tablet as long as you do not exceed six (6) tablets in a 24-hour period, unless a doctor tells you otherwise."

My doctor prescribed Naprosyn 500 mg twice a day for me, and it is working. You might want to consider trying that?

Kindest regards, Momkat

ALL drugs have side effects and most of them are useful in only approximately 60% of a given population. Do you REALLY want to be a human guinea pig?

Think hard about this one.

I recently filed an adverse reaction to Boniva report with the FDA on line after reading a Consumers Report Article about Drug Companies.

I have been seeing an Endocrinologist because I have had a problem with elevated PTH levels, a common problem for some post op patients who have had a specific form of gastric bypass surgery. The first Oseoporosis medicine my GYN gave me in 2003 , Evista, threw all my blood test levels askew, and so I stopped that med immediately.

For a full year I took no meds, then my new, young, PCP talked me into taking the Boniva. I had my first dose on September 13th, 2005 and almost immediately I had a problem with left side large muscle weakness. I did not connect those events to the drug. After my 2nd dose of Boniva in October I suddenly had unexplained severe and debilitating pain in my left arm. [Actually the pain was in my shoulder but was "referred" to my arm.] I still did not connect the pain to the Boniva. In November, minutes after taking my third dose I got out the instruction booklet that came with the drug and read that a rare side effect could be severe bone/joint/and or muscle pain. Suddenly I made a connection to the drug and the pain. But now I had to wait until December to stop taking the drug.

In the meantime I saw my PCP who sent me to Physical Therapy for evaluation and treatment. The therapist I saw for evaluation agreed that my sudden pain might be the result of taking the drug.

My PCP does not believe my problem is/was related to the drug which is why I filed a consumer adverse report with the FDA myself. I doubt that my doctor will file a medical report with them himself. I overheard the drug rep for Boniva in my docotrs office ask him if he had had any negative reports but I never heard the doctors reply. My blood tests were again askew and my PTH levels elevated. This is when I saw an Endocrinologist who also commented that I probably will not be able to take any of those Osteoporosis meds. My experience and research leads me to believe that many women are at risk for severe debilitating pain because of these drugs and post op patients that malabsorb nutrients run serious risks for Vitamin D and calcium problems with elevated PTH levels and who knows what other complications. My best bet is to inform my Endocrinologist about this and enlist him as an advocate. I have told those I know that these are dangerous compounds and at least one gal I spoke with threw away her Fosamax immediately.

When I found that web site , askapatient, yesterday I was amazed at the number of people who reported negative experiences with Boniva. I knew I wasn't alone.

Well, Grandma Pat, I somehow repeated your post! Sorry. What I wanted to say is, you are definitely not alone! You might want to check out the other posts concerning Boniva and other bisphosphonates on this webside by searching for "Boniva". Good luck, and keep us posted! Momkat

Hi,

It has been years since I posted on here. I was researching Boniva because of the severe hip pain I have been having.And it brought me back to this site. I just took my 4th pill and after reading all the posts will never take another. I went to my DR last week because of the pain and he sent me for x-rays and blood work. He didn't think it could be the Boniva but said to stop it. I can't sleep ( I'm a side sleeper ) and can't lay on my hips. It hurts to walk ,sit and stand. I hope to read about more womens feelings on this and other drugs like this.

If you experienced severe bone pain on these bisphosphonate medications I would suggest you get a Vitamin D level from a local lab. Your doctor can order it, it's called the Hydroxy-D-25 test, if you are low on Vitamin D leve (less than 30 level) you are deficient vitamin D and almost always this is a direct correlation of bone pain.

In all studies of these medications, low vitamin D was corrected and then the patient started taking the medication. I would bet money your physician is not checking his/her patients. If you are low vitamin D for a long time you can become hypocalcemic which is a contraindication for any bisphosphonate. To correct low vitamin D you get a prescription for 50k IU of vitamin D taken 1x per week for 2months, then get another lab vit-D level. Once in normal range >30, then you go on standard supplements of 400-800/day.

Good luck w/ your treatment

thanks, MaryO