A friend if mine now has bone issues from taking Fosamax earlier in life when she was diagnosed with osteopenia. She is now in her 60’s, and much too young to be having the kind of problems she is having. I don’t know your husband’s and your ages, but would look into the long term side effects and why that is prescribed.

I'm always curious about US medical practices and the high number of tests and treatments I read about here, since they contrast so greatly with my own experience. I'd never heard of Zometa, so I Googled. The first hit I found said it isn't approved by the FDA for Osteoporosis or Osteopenia. So I was left wondering why you've been prescribed it?

(I can't link to the full article because I'm not in the US.)

I was prescribed a weekly dose of Risedronate after I broke my back to help strengthen it. My muscles ache after taking it. It is one of the medications I wish I did not have to take.

I was prescribed Fosamax years ago. It was probably about 20 years ago. I am 70 now.

I believe it is now recommended to take for no more than 5 years, but I know I took it for closer to 10. Since then I just take Caltrate (OTC) twice a day. I go for bone scans every other year and my osteopenia has not worsened. Editing to add, I haven't taken Fosmax or any rx for at least 10 years, only OTC.

I did not seem to have any side effects from the Fosamax, but I did have a bunch of issues with my teeth and was advsed iniitally that implants were not recommended because of the fosamax. TBH I didn't question much when any of this was going on...and quite possibly my teeth issues would have occurred anyway . I do not know.' For the past maybe 10 or so years i have only been taking the OTC and seem fine.

My sister has had RECLAST infusions for 2 years and has had no side effects. She is going for a bone scan soon and I guess will see if a 3rd infusion is warranted.

My former sec'y took fosamax for years and ended up with jaw necrosis. I had DH on prolia for several years. The docs wanted to continue, but I was against it so now he's on nothing. One study showed the prolia was worse than fosamax for femur snapping and necrosis. That's the problem with these drugs. At least with the oral you can stop if you get side effects, but once injected, you're stuck.

I’ve had osteopenia since my 40’s. My risks for low bone density are small frame, underweight, prednisone usage off & on over course of 20 years, caucasian. I had incorporated life style changes years ago. Weight bearing exercise, calcium supplements, Vit D level checks, calcium rich diet. Nothing else I could do so in my 60’s when fracture risk increased based on bone scan, I took Fosamax for 5 years. I went off for 2, last bone scan shows osteoporosis in hip so I’m back on. My doc said Fosamax can be taken for 10 years total during a person’s life - I’ve got 5 years left. I’ve had no side effects from this once weekly pill. My endocrinologist told me - when I reisisted taking the drug the first time & then asked about Prolia injection every few months instead of pills - that Fosamax remains the gold standard as first line drug of choice for osteopenia & osteoporosis. She also told me people wiith severe osteoporosis have broken ribs from the simple act of coughing. That did it for me.

@floral_uk z.8/9 SW UK You got me curious & I never heard of Zometa so I googled too. It’s a cancer treatment drug & you’re right - not FDA approved for osteopenia or osteoporosis. Below are 3 separate statements copied from a piece about the drug. Somewhere in the piece it says that Reclast, an FDA approved drug, has a lesser amount of the active drug in Zometa.

Zometa uses

The Food and Drug Administration (FDA) approves prescription drugs such as Zometa to treat certain conditions. Zometa may also be used off-label for other conditions. Off-label use is when a drug that’s approved to treat one condition is used to treat a different condition.

In clinical studies, Zometa was found helpful in preventing bone problems in people with multiple myeloma or bone metastases from solid tumors.

Zometa isn’t FDA-approved for osteoporosis or osteopenia. However, other drugs in the same class as Zometa are used for osteoporosis. A class of drugs is a group of medications that work in a similar way. Zometa belongs to a class of drugs called bisphosphonates.

Well now I feel a bit better and less foolish for not questioning the fosamax, reading the " guidance " that fosamax can be taken for up to 10 years....

Annie the femur snapping is exactly what has happened with my friend she fell going into church and fractured the mid-femur. It has not healed properly even with two surgeries which i know is very painful. She had an xray done of her other leg and it showed the same necrosis so it was a matter of time until she had something similar happen on that leg. So she had a rod i serted to stabilize it too.

@chisue Thank you for sharing your personal information beyond your initial post. I, and I’m sure everyone else reading your posts, now understands why your doctors want you to take Zometa since it’s an established protocol for your specific condition. I firmly believe we are our own best advocates and I applaud you for asking questions because the side effects are causing you additional suffering. Asking questions isn’t the same thing as questioning doctor advice. In the bit of info I found & copied to my first post here, it says Reclast has the same active drug as Zometa but less of it. I wonder if it’s worth asking your Docs if switching to Reclast would reduce your nasty side effects and still provide the benefits you need. I don’t know what side effects Reclast has so that would need to be considered.

I wish you all the best in your journey to balance medical advice against quality of life. It takes courage to do that work in fact finding and research. Your answer for yourself is the only right one.

@salonva The 10 year max info on taking Fosamax from my doc was just told to me when I was advised to resume taking it. I’d been off of it for almost 2 years. When she told me it could be taken for 10 years I commented that ought to fix me up for almost the rest of my projected lifetime. She said - no - it’s a cumulative 10 years so you only have 5 years left. I sort of remember the endocronologist telling me the usual is take 5 years then have at least a 1 year holiday depending on bone scan results. And, if oral surgury is needed it’s recommended to stop for a few months ahead. She told me she had never had a case of any type of bone necrosis but since it has occured in trials it must be listed as a risk.

I have osteopenia and osteoporosis and just got a flash from my portal to schedule a mammogram and bone scan. I will do both but will take nothing. My BMI is 17, I think and I am very small boned. My shoe size is 5-6 and my wrist is the size of a small child. I have heard horror stories from friends on Fosamax which my GP suggested years ago and I rejected. At my last checkup last month, I asked if the 5400 miles I have hiked since covid started 54 months ago would help with the leg and hip bones and he said no. I know it won't help with my upper body bones. I fell once in those 4 and 1/4 years tripping over my pole and landed on my right tiny wrist and surprisingly didn't break it. I might start lifting weights as I watch TV in the evenings. My mother lived till 92 was small and never had a broken bone and neither did my dad but he died at 71. However, I had two aunts on both sides who had falls resulting in broken bones. I do live in fear of falling since my house has five flights of stairs.

The title of this thread makes it extremely tempting to post a joke, but I shall find the strength to resist ;-)

I am fortunate to be genetically inclined to healthy bone density. Built low to the ground but my bones are large for my height. Nothing bird like or delicate about my wrists. So I've managed to avoid any supplements or prescription drugs (excepting a daily thyroid pill) so far and I'm 73.

ask your Dr. if you can just take more calcium instead.

Careful with loading up on calcium or too large of a dose in supplement form....a study came out a few years ago indicating that could be hard on hearts. I stopped taking supplemental calcium tabs but really enjoy dairy and incorporate more than typical for someone my age into my diet. So does DH - we both drink milk with dinner every night. I have at least three glasses whole milk per day, yogurt, ice cream, cheese of all kinds - I can use the calories and that calcium is helpful.

I just had another density scan and I'm holding my own. I am caucasian, small build, light in weight, and had hyperactive thyroid years back which surely caused some loss of density too.

I've had a subcutaneous Prolia injection every 6 months for the last 2 1//2 years. No side effects whatsoever.

I have to drive to Seattle to my endo's office for it so my insurance will view it as a medical procedure and my cost $0. My EOBs indicate those appts are about $2000. If they sent it to my pharmacist or I gave it to myself it would fall under a drug and I'd have a co-pay. I drive the 100 miles, try to fit in another errand or two while in the city.

I had an implant done for one molar. My jaw bone is sound.

My SIL has had two Reclast infusions. She was sick for a week each time with joint pain, fever, flu like symptoms. Her once thick hair that she pays little attention to, never coloring and rarely even a professional cut, has diminished by about 1/3. She tells me she know by how much given the number of twists it takes in a band to pull it back and secure it, she takes another full twist now in her bands and scrunchies so much less full. She had rejected the daily Forteo shots as an alternative not understanding they are subcutaneous and not an actual injection - I think her doctor really dropped the ball not making that more clear to her in the beginning.

I take Prolia shots for osteoporosis. . I had menopause at 39 after chemo and radiation and Tamoxifen for breast cancer, and I probably missed 20 years of estrogen production as a result. I am not a huge dairy eater, and the calcium pills gave me major digestive distress. I considered Fosamax, but the procedure for taking it turned me off, plus I didn't want any more stomach issues. I have had no problem with Prolia, and I've been on it for three years. My dentist tells me that he has seen only one case of jaw necrosis in his long career, and my orthopedic doctor says he has never seen spontaneous fractures. My last bone density test showed an improvement. I am very slim, and I try to be careful. That's my two cents.

I have osteopenia, on doc's rec I take daily calcium with vitamin D supplement OTC

What about evista? What's the word on that drug?

I tried Reclast and was so sick for over two weeks and my hand curled up like a ball and i couldn' t use it, so I did nothing for a few years and then went to Prolia. I have been doing that for several years with no problems.

lonestar -- I'll ask about Prolia. I believe that's denosumab acid, like Zometa. Maybe weaker? Do you inject it? DIY, or as an in-patient (where Medicare B will cover the cost)?

It is an injection every 6 months given at the clinic. It is frozen and they won't take it out of the freezer until you have checked in because it is expensive and they don't want to waste a dose. Before medicare I was on a program from the company that makes it and only paid 25.00. Now it costs 297.00 twice a year. Never had any problems and it seems to be working.

lonestar -- Sorry so late! Thanks for the information. I will ask about Prolia. So far the only alternative I've been offered is Xgera.

Maybe you're not on Medicare? That has paid for all the injections and infusions that I've been given 'in hospital' (clinic).

I was pretty unhappy to have to start taking an oral pill because that's not covered the same way. The Revlimid is $18,000 a month retail/$8,000 OOP to me. At least that fulfills Medicare's annual OOP. After January's $8K Revlimid bill, all my prescriptions are free until next year.

Chisue, pm me your address and I’ll send you another one of my click bags!

Kathy G in MI

My PCP told me that she could give me the Prolia shot, but that Medicare would pay for it if I went to a hematologist for it. She has to send him an order for it .I think he does infusions for various diseases, and I've never even seen him in passing, so I often wonder if he really exists. I am in and out in 5 minutes. But his office staff seems to handle the insurance without issue. I have a Medicare Advantage plan, so I don't know exactly how payment works. The Prolia shots are March and September. I pay about $250 in March, but my out-of-pocket is reached in time for the September shot.

My original hope was to find an endocrinologist or rheumatologist to do this, but it was during the pandemic, and nobody was taking new patients, so I had to patch things together. Bonne Chance! (Olympic fever)

I just want to add that I'm still suffering from that Zometa infusion. Not AS terrible, but still aching and feeling exhausted three weeks later. Put it on your *Beware* list.

Got your message, Kathy. Hope you understand that my crafty DGD would be offended if I didn't use her gift.

I get Zometa infusions every 9 weeks w my chemo. I've not had any ill effects from it. On my FB chemo groups, a lots of women take Claritin to reduce any inflammation and super hydrate the day before, of, and after, And Tylenol if needed. Hope you find some relief.

Claudesmom -- I'm very happy you have no bad reactions to the Zometa. I always get hydration with my infusion (Darzalex) and two Tylenol and one benedril 30 minutes prior. Infusion every five weeks. Maybe I was given a stronger dose... who knows!

I'm also *old* (83), weigh only 93 lbs., and am full up to the top with six years of toxic sludge (all those something-mabs).

May I ask what cancer you're fighting?

Chisue - I'm dealing with stage 4 metastatic breast cancer. I'm 72,