Boniva or Fosamax???
Hi ladies,
My daughter has a hip problem at her young age of 15, hip is destroyed due to a benign tumor and she needs a hip replacement. The bones destruction does seem to continue and her doc wants to put her on Boniva.
I am hesitant because of the bad rep with jar necrosis, her doc says if that happens, we stop and it reverses??? Is that true???
Also, is there a difference in which one is better....Fosamax? Boniva?
I don't know what to do....No matter what I decide, I feel like it will be wrong and with heavy consequences....
Please advise....
God Bless
Comments
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It was my understanding that osteonecrosis of the jaw was irreversible.
Tina
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Calico, I'm with Tina.....it is irreversible. I'd be hesitant too. Best wishes!
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Thanks,
does anybody know how long it takes to develop? The plan would be to put her on for 4 months.
I also asked for a CBC etc., kidney, liver....I was told she is so young it would not be necessary....duh....she is to young at 15 for a destroyed hip too....
I feel like I am talking to the wall today.
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Calico:
I have been on Fosamax for about 6 years now. The other day, I asked my dentist about jaw necrosis and he said that most cases come about for people who have the intervenous (sp?) injections of it, not the pill form. I totally understand your concern but he said it was pretty rare . . . Wish I could be of more help. I know how upsetting this must be for you. Maybe some of the other gals will have more info. About it being reversible, not sure.
Hugs,
Pat
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You certainly should be able to have your request taken seriously. She is NOT too young to have these done. How many YOUNG women get bc and their docs say, YOU ARE TOO YOUNG. Insist on having the blood work done.
I thought that most people effected by jaw necrosis were one's who had cancer treatment. I may be totally wrong. And my dentist (who I don't believe..like I don't believe a lot of docs) says it's usually the shots (?) or is it intravenous (?) that causes the problems.
You could always get a second opinion. She's too young to let her bones deteriorate more.
Perhaps someone else will come along with another opinion.
Shirley
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Gosh, thats so young in her life to have to make that kind of decision. As a Boniva taker I can tell you I take it rather than Fosamax solely because its a heck of allot easier to be compliant on a pill thats once a month than every week. I was always late on Fosamax and sometimes had to skip it entirely because it got too close to the next dose. And taking into consideration you need to take this stuff on an empty stomach and then not eat for an hour; I do think that compliance will be even more of an issue for a teenager.
For me I know to take Boniva the day my SSDI check comes in---hard to forget that day when things are so tight.---works for me.
If it were me and I made a decision to take it for the time being I would want her to have a
vacation from them at least every four or five years---since this stuff stays in your body for years and no one is really sure how long. And when I say vacation I mean a couple years off.
This is why from a very good article in More Magazine
While short-term side effects for these drugs seem innocuous (mostly gastrointestinal upset), long-term effects are less clear. Several experts I asked felt it was safe to take a bisphosphonate for 10 years, others suggested a vacation as a good idea after two or three years, and still others felt a break after five years was a better bet.
"There's a concern about oversuppression of bone turnover," explains Robert Lindsay, MD, PhD, chief of internal medicine at Helen Hayes Hospital in West Haverstraw, New York. "The drugs incorporate into the bone and, over time, accumulate. That could make the bone rigid and more likely to break, theoretically speaking."
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If you go with the bisphosphonate do make sure that your daughter has a dental exam beforehand and any dental work completed before she starts the medication. Then make sure she keeps up with her dental cleanings. The time she is most at risk is with dental extractions.
If you need to choose between extraction and root canal--root canal is much safer on these meds than extraction.
Best of luck in making a difficult decision.
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Calico and daughter, I am so sorry for this trouble. How simply unfair for her and you.
Four months of a bisphosphonate such as Boniva or Fosomax should be o.k. if your daughter has good healthy gums, and stays away from dental extractions such as wisdom teeth pulls.
I say this because many studies link poor gum health with the onset of osteonecrosis of the jaw. Not all, but many. IV Zolodex or Palmidrate is indeed associated with a higher rate (I think 4%) than oral (I seem to recall very low, like 0.3% or so).
The benefit, is it felt to help stabilize the loss of bone before the surgery, Calico? Or is it being suggested after surgery to help stabilize the new joint? Or is it sandwiched for both?
It's not a bad idea to check your daughter's kidney status, her creatinine and BUN on blood tests. These drugs do get excreted through the kidneys, so that's reasonable.
A good dental exam, cleaning before the use of the proposed new drug would cover her for the six months of a biyearly cleaning. And your dentist could see that no teeth are coming in sideways etc, prompting reconsideration.
It's just my opinion as a Mom of a teenager, yet I think I would go ahead if all systems were go, and fully understood why the orthopedist was recommending it, with using it should it help my daughters acceptance of a new hip, and ultimate function. But I truly understand how this weighs on you and wish you and she only the very best.
Tender -
So sorry to read of your young daughter's situation. I've been taking Fosamax for almost 4 years now, and my bone density has actually increased. My 1st DEXA scan showed borderline osteoporosis (I'm small boned, slender and unfortunately the condition runs in my family). My most recent scan showed a marked improvement, and I'm now borderline osteopenia.....wow I've really graduated! I'm also taking Arimidex.
I've had little, if any side effects from Fosamax. I've also had extensive dental work over the last few years with no problems.
Best wishes to your daughter.
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Thank you all so much, you are right
I spoke to a friend today who used to work at a dental office and she also told me about the IV...it makes sense.
Thank God my daughters gums are healthy, no cavities and no wisdom teeth yet.
The Bonita is suppose to make her bone stronger again or at least stop the avascular necrosis and sclerosis that seems to have set in on the femur head and in the acetabulum.
If her femur neck wasn't thinning, she would be a good candidate for hip resurfacing, something better for young active people, than a replacement. Maybe the drug helps her and it will be a possibility.
I will go in with her to see the GP and ask her for blood tests on the 19th, we just have to wait until then, if they say the same about not needing them, I will pay for the the tests. If all looks well, I agree to the Boniva for now.
My 'baby' is so sweet, she said I should not worry so much about her, it isn't good for me because of my bc.....she is the sweetest thing on earth. How could I not worry....she is going through so much.
Thanks again and hugs to you all!!!
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Calico, I agree with your decision about putting her on the med. I can't understand for the life of me why they wouldn't do the bloodwork.
You do have a sweetie. You might as well tell her you'll worry about her EVEN when she reaches adulthood. That's the "mom" in us.
Shirley
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Thanks Shirley,
when I'm 78 and she's 50, she's still my 'baby'
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Yesterday was the second time my 15 yr. old daughter took Boniva.
Same as last time, incredible bone pain and fever for a day.
I hope she feels better tomorrow.
Anyone else with these side effects?
God Bless
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This sounds like what happened to me each month after my Neulasta shot!(Same type thing, in a way.Neulasta helps chemo patients keep their white cell count up.The drug encourages bones to form white cells.,And it does hurt like hell.)
Calico, I actually came to support you in this, and to say I'm very, very sorry that your young daughter has to be saddled with this.
I wish we could fast-forward to next New Year.Your daughter is through her Boniva tx, AND her hip resurfacing.It went perfectly, and she feels marvellous now.Just like every other 16 year old girl.And Happy Sweet 16!
Love,Joan
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Thank you [[Joan]],
I had Neulasta too, but just general bone pain.
Thank you for your good wishes, I will pass them on. The hip resurfacing is still not determined due to her "skinny" femoral neck, got to have a strong one and the x-ray two weeks ago showed a "cookie bite" shape degeneration to it....awww....if I could just donate my femur or hip.....
God Bless
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Calico--These seem to be among the more common side effects of Boniva---depending on the severity. Could it be that that an adolescent would be more sensitive to that medication since
her bones are still growing?
(The pending revision regards possible atrial fibrillation (an abnormal heart rhythm))
---------------------------------------------------------------------------------------------------
What side effects can this medication cause?
Pending revision, the material in this section should be considered in light of more recently available information in the MedWatch notification at the beginning of this monograph.
Ibandronate injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
* stomach pain
* nausea
* constipation
* diarrhea
* heartburn
* back pain
* rash
* bone, joint, or muscle pain
* pain in the arms or legs
* weakness
* tiredness
* dizziness
* headache
* fever, sore throat, chills, cough, and other signs of infection
* frequent or urgent need to urinate
* painful urination
* redness, or swelling at injection spot
Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately before receiving any more ibandronate injection:
* painful or swollen gums
* loosening of the teeth
* numbness or heavy feeling in the jaw
* poor healing of the jaw
* eye pain or swelling
* vision changes
* sensitivity to light
Ibandronate injection may cause other side effects. Call your doctor if you have any unusual problems while taking this medication. -
Dear Calico, I know the resurfacing is iffy, and the reason for the Boniva.But I am just being super positive.It WILL be ok.And next year at trhis time, everything will be wonderful.
I'm sorry your young daughter must go through this.(whyyy?Why??) But this WILL end, quickly, and happily.
Prayer helps, and I am sending mine.
Thanks for passing on my good wishes to your "little girl"(mine are in their 40s, and my granddaughter is 17!)
Love to you both.
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OMG,
Susie,
do you have a link for the revision? I did not know about the Atrial fib.
She also is suppose to take Celebrex, which is like the off the market Vioxx....
the first thing on the Celebrex is the warning for heart attack. Her doc said she doesn't have heart disease, so the risk is "low" like with everything else. So, now she is on two drugs that can cause heart trouble??
As for the Boniva, it is not even approved for "pediatric" use. My daughter is 15 but already 5'7" and 126 lbs, so technically, grown but her bones are not yet fused and her poor young liver has to process all the chemicals.
Of to Dr. Google.......
Joan,
thank you so much for your prayers.
God Bless
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Calico--I didn't post it because its a very preliminary investigation ---with no conclusions. Here is the link
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THANK YOU
Susie!!!
What do you make out of it? It appears to be only "older" women in the watch group. And they say they have it a lot anyways....
Is atrial fib similar to palpitations? I mean, would somebody "feel" them?
I had them once and there was only a slight visibility of them and I was told that is "common" but I definately felt them.
Should I even give her the Celebrex with it?
After the Celebrex I was already impatiently waiting for my daughter to get up on the weekend...just to see she's alive (damn warnings on the package make for extra anxiety).
Do I do the right thing as a mother, listening to the doc? Who do I have to blaim when "things" happen....can't say I wasn't warned and so on.....blah...blah...
Sorry for rambling.
Thank you so much for your help.
If feels really good when I stop banging my head against the wall
Sitting on the confused couch as usual. I want to do the right thing for my daughter and not put her in jeopardy. There is really no room for Error.
I guess we are in for another visit to the doc....am I overreacting?....what would you do?....she is probably going to be fine...
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Oh Calico this is so hard for you.I'm so sorry about it all.
I can so imagine how you feel.
I'm going to say this but NOT to upset you.
I think you should get a second opinion, about the meds especially.Is this doctor her..pediatrician?
Or is he a surgeon?
Because the one to go over that schedule of meds is a pediatrician.Some do adolescent care.
I noticed that throughout my 4 and 1/2 years of bc tx, my onc was rabid about keeping me "clean" This is his job.He fights cancer.
The femara gave me pre-prediabetes, gave me high lipids, lowered my beautiful Ldl cholesterol.Ruined my QOL.Made me into an old cripple.
My primary doc said, upon checking my labs "and he still wants you to take this drug, even with...THIS?"
But--he WISHES he cared.He is an onc.And all he cares about is cancer.
And I'm thinking your daughter's doctor has a treatment plan planned.And if it isnt so healthy drug-wise, it doesnt matter to him, because he is thinking only about this hip, and the best way to cure it.
And this is why I say someone else, a pediatrician, should look over these meds.
Please dont be upset.Just get a second opinion of another sort of doctor, and you can relax!
love, j
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Calico,
Yes, palpitations, would be a symptom as could shortness of breath, lightheadedness and chest discomfort.
I think its really too early in the FDA's investigation to be alarmed about this. It's still in the reporting stage----But, overwhelming pain,-- that is another matter and should be reported and addressed---I'd be a squeaky wheel about that one! I'm so sorry. I can't imagine watching your child in pain and unable to take it away.
Maybe there is something she could take instead of Celebrex?
Sometimes specialists can be a bit myopic. Do you have a Primary Care Physician for her? One that is a family practice specialty (they take care of birth to death) If you do I would contact one of them and see if there is anything that may give her better pain coverage and make sure that the meds are age appropriate.
How much longer does she have to take the Boniva?
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Oh man....
my daughter was on regular Advil but it doesn't do the job anymore. She had the benign tumor (whole synovium/cartilage on hip) removed which ate into the bone.
This left the femur head and the acetabulum (both go together) damaged and every move hurts. The damage has to be adressed with a replacement, no other way. She has also a bone spur now on the femur head which "pokes" with pain on every move. Crutches help so she's almost permanently using them.
The Boniva is suppose to strengthen the skinny femoral neck as well as to adress the cystic lesions in the acetabulum, which, in turn, has to be healthy to have the replacement hip attached.
Her doc is an orthopedic oncologist who treats kids with cancer with Boniva too. The plan is 3 - 4 month and then MRI.
Did you know you should not have contrast with your scans when you take Boniva (learned that one myself, not told by doc), allergic reactions can follow!??
We are in the mil. system (as in seeing a family doc), so specialty questions like this I rather have adressed by specialists (per my experience....).
I will call her orthopedic onc on Monday and e-mail your link, Susie.
For now I will not give her Celebrex until I talked to her doc, the only pain my daughter had (assuming from the Boniva) was some discomfort under the sternum (stomach, my guess) and it is gone.
Thank you both!!!
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Calico-- I took a very bad fall
(actually 2 falls) --with a traumatic enough injuries to necessitate a shoulder replacement. I had also dislocated my shoulder at the time and torn the rotator cuff in addition to multiple fractures---Unfortunately for me the Docs in the Emergency room didn't realize the extent of my injuries and tried to pull it back into the socket----The result was a Brachial Plexus Stretch and that trauma has caused a condition called Reflex Sympathetic Dystrophy (RSD) aka (CRPS)-----That began 4 and a half years ago.
Pain has been a constant for me and pain control a balancing act. I'm an ongoing medical experiment and have been on medications too numerous to count----You name it --I've been on it! The only thing I can't take are NSAIDS and COX2 inhibitors---because of a toxic auto-immune reaction I've had to them. Additionally I'm allergic to Sulfa.
Anyway, What I wanted to suggest is that you may want to try the Traumeel ointment on her---Ask her orthopedist. It is a Homeopathic Analgesic. I have found that it can really break the pain cycle. It works quickly and I find it really can make both the musculoskeletal and the nerve pain more manageable.
I do have heavy duty medications but the Traumeel keeps their use to a minimum if I catch the pain in time. I feel so strongly about it that I now have three tubes. I went into an absolute panic a few weeks ago when I lost my tube. My pain levels were through the roof again. I promised myself that would not happen again. So I now keep three on hand.
One, I keep by the bed. I keep another in my pocketbook and a third in the living room. Before that I was getting a specially compounded ointment
composed of Gabapentin, Ketamine and Clonadine---The Traumeel works much better.It can be gotten at any Health food store but iherb.com really has much better prices.
Just thought it may be worth a try. Your Orthopedist will probably just shake his head thinking its another crazy homeopathic--but I tell you the stuff works!
I'm truly sorry that your daughter has so much to go through at such a young age. I did not realize that your Orthopedist's practice had an adolescent population as well. That makes all the difference.
By the way, I was put on the Bisphosponates not because of the AI but because of the shoulder replacement issues.---It was my Orthopedist that put me on it.
Thinking of you both
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Susie,
I will look for Traumeel. Sounds like the whole family can use it.
As for my daughter, it might not work since the pain is so deep in the bone and caused by the groves and irregular shape as well as bone on bone without synovium or lubrication but I will definatly cover her hip with it.
God Bless
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Calico- A year after the shoulder replacement I managed another fall resulting in some more very rare traumatic breaks in the same arm. The elbow this time. I am metal woman! Distinguishing the bone pain from musculoskeletal and from neurological is difficult and at times they overlap. One can set off another.
If you put your hand on any of my affected areas you can still feel the heat they are radiating, and the liver enzyme Alkaline Phosphatase always runs high as a result of this.
One thing with chronic pain that I find; As you make one pain better you
become more aware of others. Still, it may give her some relief. -worth a try.
My prayers are with you that your dear daughter can find some relief and this will all eventually be a distant memory. I know this is a long road and my heart goes out to you.
Love,
Susie
PS--Just alerting you of this from Medwatch today
FDA informed healthcare professionals and patients of the possibility of severe and sometimes incapacitating bone, joint, and/or muscle (musculoskeletal) pain in patients taking bisphosphonates. Although severe musculoskeletal pain is included in the prescribing information for all bisphosphonates, the association between bisphosphonates and severe musculoskeletal pain may be overlooked by healthcare professionals, delaying diagnosis, prolonging pain and/or impairment, and necessitating the use of analgesics. The severe musculoskeletal pain may occur within days, months, or years after starting a bisphosphonates. Some patients have reported complete relief of symptoms after discontinuing the bisphosphonate, whereas others have reported slow or incomplete resolution. The risk factors for and incidence of severe musculoskeletal pain associated with bisphosphonates are unknown.
Healthcare professionals should consider whether bisphosphonate use might be responsible for severe musculoskeletal pain in patients who present with these symptoms and consider temporary or permanent discontinuation of the drug.Read the complete 2007 and 2008 MedWatch Safety Summary including a link to the FDA Drug Information Page regarding this issue at: http://www.fda.gov/medwatch/safety/2008/safety08.htm#Bisphosphonates
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Thank you Susie (bionic woman
),
I am sorry you went through the wringer so many times.
Sounds definately worth the try. I'm off to Whole Foods today!!
Thanks for the update too!!
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