Mom, Reclast and Disagreement About Reclast

My mom is scheduled for a Reclast infusion this coming Monday and I am totally against it. She is 80 years old with osteoporosis, but she still an active, healthy woman who looks great for her age in spite of her condition. She still has a good posture and she exercises regularly with weight training, eats healthy and takes calcium, vitamin d and fish oil. BUT, she believes Reclast is the answer to her Osteoporosis and she will not listen to reason.

Mom has avoided taking any osteoporosis medication because of the negative side effects up until her recent decision to go on Reclast. Her doctor recommended that she goes on Reclast after her bone density test results. I am against any bisphosphonate, especially Reclast because I think it's too new of a medication. There are just not enough proven studies and since it's new, we don't know the long term effects.

Bisphosphonates are too toxic and the potential side effects can ruin her quality of life. I mean she is 80 years old and this is the happiest I've seen her and the most active. I don't want that to change. Is there something else other than these toxic drugs? Is there a proven safe non-drug (vitamin, herb, etc).

As you can read, I am very concerned daughter. I've read some of your personal experiences but I cannot give my mom the green light based on such new experiences with this med. As a cancer survivor who has gone through her share of toxicity, I don't want my mom's quality of life to be ruined because of a toxic drug that can stay in the system for an undetermined period of time and can cause more problems. She is a happy 80 years old and I feel this med can ruin it.

There must be something else? Please help.

Monet

By nobonesaboutit
Posted September 6, 2008 at 11:32 am
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Dear Money2008,
Your mom is lucky to have a loving daughter. I too have been told to get Reclast and yes, I'm apprehensive. Right now I had a dental emergency that has to be resolved before the infusion. I have found this website to be useful in making me less frightened about it. There are many stories here and not that many have actually had the med and complained about side effects. It's not an easy decision but the alternative to me has been devastating to having any quality of life before I began osteo treatment. Remember, it is your mom's decision and sometimes it is more helpful to that person if you let them know you'll be there no matter what decision she makes. If I let my fear rule, I'd have been dead by now due to complications of my osteo-and I'm only 49, not 80! Just remember how healthy she is and she made all the decisions for keeping herself that way for 80 years! She's a smart lady. Good luck!

By neil
Posted September 7, 2008 at 4:15 am
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Monet's concern is wise: why risk the expense of Reclast when it achieves so little?

as previously discussed, osteoporosis fracture prevention requires nothing but a sensible lifestyle plus sensible lowcost permanent cocktail of natural supplements that reverse all chronic degenerative diseases- eg calmag, boron, zinc, manganese; vits B C D & K, proline, and lowdose appropriate HRT. Better late than never, but the earlier started the better.

The reviews and trials of bisphosphonates the last year are especially alarming for zoledronic acid (ZA Reclast / Zometa)

What they mysteriously neglect to report is the quality of life QOL, mobility after major osteoporotic fracture- when it is common cause that waiting for major disease before starting prevention is disastrous- sudden death, stroke, dementia; or that at best 20% of patients recover full health and mobility after hip fracture.
While it is common cause that quality of life QOL is greatly improved by appropriate HRT in the menopause transition- the midlife decade of menopause symptoms ,
longterm QOL outcome is conveniently not mentioned in any bisphosphonate papers that span the progressively more risky decades after the midsixties - although this QOL attribute for ZA is a main goal that Novartis mentions in it’s registration motivation ” The unique once-yearly dosing of this medicine (ZA) has the potential for significant ... improved quality of life for women with osteoporosis.” But Novartis gives no evidence of longterm improved QOL to justify the cost and risks.

Despite the fact that trials of bisphosphonates for osteoporosis started over 20 years ago, no such claim of improved mobility and QOL long term is made, so there cannot have been any significant improvement shown. There are exactly two small trials, from Italy and Turkey, that lasted one year looking at QOL, that showed improvement in QOL on (alendronate or nerindronate or calcitonin) plus calcium/vit D versus calcium/vit D alone. Short term study- one year - says nothing about the average 35yrs of life expectancy after the perimenopausal midlife decade. .

The bisphosphonate promotional trials also blithely omit that the top risk factor for osteoporotic fractures is not bone density but overall physical frailty, falls; and while major fractures are common in the old, they dont happen if the patient dies early, or they matter little if the patient is first disabled (before fracturing) by far more common cardiovascular-stroke problems or dementia. .

So there is no justification or need to take bisphosphonates or any other newer patent drugs for osteoporosis - and why take the risk of bisphosphonate arrhythmia, toxicoderma angioedema, oesophagitis or osteonecrosis?

see http://healthspanlife.wordpress.com/2008/09/06/update-why-take-bisphosphona tes-or-any-synthetics-for-osteoporosis/

By MotherGoose
Posted September 7, 2008 at 7:27 am
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This is your mother's decision and you state she has a good mind. Please do not hound her about this. It could damage your relationship. Nobonesaboutit gives good advice. Be there for your mom no matter what happens. And guess what? How about the idea that she wants to ensure her bone structure with the Reclast for her future good health and active life. Reclast has been helpful to many, many people.
Lucy Buckley PT aka Mother Goose

By MotherGoose
Posted September 7, 2008 at 7:29 am
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Juvent 1000 and Reclast are not in the same category at all.
The body of evidence for each does not compare.
Lucy Buckley PT aka Mother Goose

By MotherGoose
Posted September 7, 2008 at 7:42 am
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Neil:
QOL is directly affected by fractures sustained and the changes that alter one's life because of those fractures. Needing more outside help; damage to self-esteem; institutional care; depression; slower walking; not being able to fully participate in customary events, etc. One can measure QOL by changes after fractures in a given population via such changes. One cannot measure QOL in those on a certain medication -- or not on said medication --without considering the occurence of fractures or absence of fractures. There are too many variables.

By KalisMom
Posted September 7, 2008 at 7:59 am
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Hi Monet,

You are a good daughter but it is your mother's decision in the end to take Reclast. As someone else said here, she's taken good care of herself so far!
How would you feel if she took Reclast for just one year and then you looked at the results after that. Would that be a good compromise for both of you?
I had my first Reclast infusion in June of this year, and I haven't have any side effects to date. (66 yrs. old) I do want to be tested after this year to see if it helped my bones at all.
KalisMom

By rosaflor
Posted September 7, 2008 at 11:32 am
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Your mother is 80 but you didn't mention where she has Alzheimer's or some other illness that might hamper her power of reason. IF NOT, please show your mother the courtesy of respecting her right to make her own decisions. I am reminded of the story of the woman who took her 80 year-old mother for a doctor's appointment then spoke exclusively with the doctor, who spoke exclusively with the daughter, neither of them speaking with the mother as they chatted back and forth while ignoring the actual patient. When Mother had had enough she asked the doctor, "Do you work crossword puzzles?". Humoring her as a childish person the doctor said, "Yes." "Well then," said Mother, "do you work them in pencil or ink?". Surprised, the doctor continued to humor Mother, and responded, "Why, I work them in pencil." "I work them in ink," snapped Mother. "Please speak directly to me and not to my daughter since I am your patient."

By Monet2008
Posted September 7, 2008 at 7:09 pm
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Thanks to most of you for your advice. Based on all the information I gave my mom, studies, second medical opinion and other patient's experiences with Reclast, mom decided against taking it. Reclast just got out of clinical trials not too long ago and it has some serious side effects that unfortunately many don't talk about or don't want to hear. My mom's situation is not as dire as those whose bones are worse to take a chance on this medication.

There was a sarcastic undertone with one of the members here asking me if my mom has Alzheimers. That was very rude by the way. I think I mentioned here mom is healthy and that should answer your question. As a concerned daughter who loves her mom dearly and respects her, I felt I had the right to get involved by providing her with all the facts before she decides on such a drastic, serious medication, especially since she is doing so well right now. If the situation were reverse, Mom would be advising me too.

To those who told me not to meddle, I am sorry you don't have family or loved ones who go the extra mile for you and who care about your well-being.

Best to all of you.

By BoneLady
Posted September 8, 2008 at 11:29 am
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Hi! Monet2008, I'm glad your mom decided against taking Reclast. I am against the bisphosphonates after having suffered for a few months on Fosamax and having read some of the horror stories about this class of drugs.

You did not mention what your mom is going to do about her osteoporosis. Are you and she aware of strontium citrate? It is a supplement available from health food stores and online distributors. It should not be used by individuals with chronic kidney failure. Otherwise, it is safe as long as calcium and vitamin D intakes are adequate.

Strontium is found naturally in the human skeleton. Taken orally, strontium is incorporated into the teeth and bones. It promotes bone formation and decreases bone resorption. You can read more on my blog at http://strontiumforbones.blogspot.com/

By KathyS
Posted September 8, 2008 at 4:15 pm
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I am much younger then your Mother and have spoken to my daughter about my options with this. Where as I realize your concern over the best available and safe medicine out there, sometimes we have to go with what feels right for us and when your Mother made her decision I hope she weighed all the pro's & con's. As women we need the network of friends or family in which to bounce our fears off of and wish for suggestions. In the end the decision rest on us alone though and after confiding with our circle of friends, family, I hope any decision I make that they will support me in it whether or not they agree with me.. and it's hard with our parents when we love them and don't want anything to happen to them.

I will say this, to say that a person may not have someone watching over them is a bit harsh too. Not all have a daughter or son or husband to lean on in tough times. but most of us find those that may not be family in a traditional sense but who's opinion matter just as importantly.

Lastly, the loving thing is to be able to accept what our loved one wants no matter what we feel is best for them. To get someone to agree with us through aggression isn't being helpful either... it's selfish.

By pgreene
Posted September 8, 2008 at 5:36 pm
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BoneLady,
Is there any proof that strontium citrate works??? And please don't tell me it is the same thing as strontium ranelate because it is not. We cannot guess that strontium citrate will work the same as strontium ranelate. And I don't think there is anyone out there who has taken the strontium citrate long enough and not mixed it with other things to prove that it works. Often those that have found improved scores forget to tell the technician they are taking strontium. What scientific data do you have to contribute?

Peggy

By BoneLady
Posted September 9, 2008 at 11:58 am
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pgreene, Yes, there is scientific proof that strontium citrate works. At the end of my blog at http://strontiumforbones.blogspot.com/ there is a section called "For More Information About Strontium" with links to references. One link titled "Strontium Citrate Osteoblast Study" comes to this conclusion: "The data support the hypothesis that strontium citrate increases the proliferative/alkaline phosphatase activity of human osteoblastic cells from alveolar bone. The results validate previous research that has been done with other forms of strontium in clinical studies and rodent calvarial cells and indicates that strontium citrate could be a promising agent in treating oral as well as sytemic bone disorders."

Another link titled "Strontium for Osteoporosis and Arthritis" is a paper written by Ward Dean, MD, who concludes, "Although the more recent studies used strontium ranelate, earlier studies used other salts of strontium, including strontium carbonate, strontium lactate, and strontium gluconate. It appears that the active ingredient is strontium, and whatever salt of strontium used is less important than the amount of strontium consumed."

By raindancer
Posted September 9, 2008 at 1:49 pm
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I need to know more about the effects of strontium for those of us who have to take Nexium, Prilosec etc. which prevent Calcium from being absorbed. My Dr. has advised Reclast because I have lost so much bone density in my wrist and spine in the last 2 years.

I would rather try something else for the next 2 years and then will decide if I want to try the Reclast. By then I will be 80 and my family knows me well enough to know that I will make a good decision.

Right now I am looking into additional mineral supplements, more bone building and strengthening exercise and work on my balance which has not been good since I had Guillain Barre' 24 years ago. I have foot drop as well as periperal neuropathy, severe spinal stenosis, herniated disks and rotator cuff injuries.

Also have bad GERD which necessitates 40 Mg Nexium AM and PM [even then I still have GERD but can live with it]. I have switched to Calcium Citrate in the hope that it might absorb at least somewhat and increased my Vit D intake.

Please don't get the idea that people who are entering old age [which I feel always starts at least 5 years ahead of my current age] ...lol... cannot make wise decisions for themselves.

Some days I can do more than others but I can always do at least something to make myself better and stronger. Maybe when I hit 88 or 90 I won't feel that way but I'll worry about that when I get there!

I am so glad I found these boards, I learn new things all the while and am meeting some great people!

By BoneLady
Posted September 10, 2008 at 10:49 am
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Hello Sandi, Because of my science background, proof to me means scientific data obtained from laboratory and clinical research. Testimonials are not proof. That said, I do agree with you that one's own quality of life is the most important factor of all.

By BoneLady
Posted September 10, 2008 at 12:25 pm
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Sdivas, The purpose of my blog is to provide information about strontium and to relate my own progress using strontium citrate for osteoporosis. That is why I give the exact date (01/21/08) I began taking it. A blog is like a journal. As time goes by, I plan to provide more data, such as original and subsequent T-scores, any pertinent lab test results, my general health, other vitamins and minerals I take, my exercise routines. It is a work in progress.

After taking Fosamax once weekly for several months and feeling really ill, I began doing online research on osteoporosis treatments. I was ecstatic when I read about strontium.

I do have high expectations for my regimen of 680 mg strontium citrate daily combined with good nutrition, vitamin and mineral supplementation, daily walks, and safe exercises.

We must all make our own choices, but they should be informed choices.

By KathyG
Posted September 15, 2008 at 10:32 pm
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Bonelady, My doctor wants to start me on Reclast and I'm not sure I want to go that way. I have a problem with my bone breaking down and rebuilding too fast ( when this happens the bone is abnormally shaped and weak ). It is called paget's disease of the bone. Does anyone know of something else like supplements that can treat it? Also, what will happen if I don't do the Reclast, what does it look like for my future without treatment? I'm 51.

By BoneLady
Posted September 18, 2008 at 11:55 am
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KathyG, For Paget's disease of bone, treatment is usually reserved for people with symtoms. The prognosis is generally good, especially if the condition is diagnosed and treated before major changes in bones have occurred and in the absence of osteosarcoma. I hope you have a doctor who is familiar with your particular case and who you can trust to answer your question about your future with and without Reclast.

Aspirin, mild pain relievers and anti-inflammatory drugs can help treat pain and inflammation. I don't know of any supplements specifically for Paget's, but you might consider taking antioxidants for your general health. Antioxidants prevent oxidation, which can cause damage to cells and may contribute to aging and age-related diseases. Antioxidants include carotenoids found in deeply colored fruits and vegetables, such as apricots, broccoli, pumpkin, cantaloupes, spinach and sweet potatoes. You can get lycopene from tomatoes. Vitamins A, C and E, magnesium, copper, selenium, and zinc are also good antioxidants. All are available in foods and vitamin/mineral supplements.

I hope this helps. I wish you the best!

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