I am in desperate need of some positivity and success stories regarding the use of bisphophonates, particularly the once a week for 2-3 years regimen, and then hopefully a drug holiday. The word I see most often on this site is "terrified", as I also am, by other readers considering the prospect of taking these drugs. In all the reviews and research I have read on various sites it is nothing but horrible news. I have been putting off starting medication for a good decade but my doctor seems to feel that now is the appropriate time. I have just turned 65 and Medicare will not pay for brand medication so it will have to be generic alendronate (which is an additional fear) unless I pay out of pocket. Has ANYONE out there had a good result without wrecking their stomach or having agonizing joint pain???
Thanks!
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Loveballet
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I am in a similar situation. My Dr. Wanted to put me on Prolia but my insurance would not cover it The only thing they would approve is Alendronate after reading here of others experience on Alendronate, I am scared to take it. I'm not sure what I'm going to do
Thank you for your reply! I hear and appreciate your concerns. I’m not happy about any of the drugs but Prolia is the one I’m really trying to stay away from. I understand that once you are on it, as soon as you stop it after two years that you MUST go on bisphonates anyway to avoid the dreaded cervical fractures that are so common with it. Good luck making your choice. It really is one if the scariest decisions I’ve ever had to make and yet every now and then I hear about folks who have had fairly good experiences which I desperately need. I’m more afraid of letting my fear keep me from making a wise decision. I love to dance and to travel. If I end up with fractures I’ll no longer be able to make the 8 hour flight to London to visit my daughter and grandbabies! Much less navigate the endless stairs in Europe!
Many thoughts here. I posted my experiences prior and was ignored , but here are thoughts via my latest experience. Hope it helps.
Remember that every person is different and drugs will react differently in each system.
Following directions and communicating with the prescribing doctor are imperative as well as reading and asking questions.
I was successfully given 5 Re-Clast infusions between 2007 and 2012 with no side effects other than sniffles for 24 hours after the first infusion.
This was a fairly new drug at the time, but my doctor explained it and felt it was the better choice for me than the oral medications that you mentioned.
I followed directions and was attentive to hydrating well prior and down the road.
I was given a 5 year break as I did well.
Jump ahead, the medication needed a boost in 2020.
I sought a second opinion, as my doctor wanted me to take Romosozumab for a year, despite my family history of cardiac issues, followed by Re- Clast for 3 years. No thank you.
Additionally, I consulted with my nephrologist, as I now have an unrelated kidney disorder, and had concerns.
I was given another Re-Clast infusion 3 weeks ago.
I made sure that I was well hydrated prior and drink 64 oz of water daily; taking my calcium, magnesium with D3 as directed.
My doctor ordered a one hour drip infusion which is safer than the usual 15 minute procedure which was fine.
I haven't had one side effect from this infusion and my kidney labs ordered this week are fine.
That's just my experience.
I too was not comfortable with oral medication or the side effects of Prolia as suggested by my second opinion, so I understand your feelings.
Speak to your doctor about all alternatives and don't hesitate to get a second opinion as to what is best for you.
Please let me know how you are doing. It's not a 1-2-3 decision.
I am on Alendronate Sodium 70mg. I take 1 pill once day a week. The only side effect I think I get is making my constipation a little worse. Otherwise no problem. I have Osteopenia and that has not gotten worse. I have been on this drug 3 years.
Thank you! I really appreciate your reply! I’m surprised that you were put on a med if you have osteopenia rather than osteoporosis. Have you had fractures? If you’ve been on it for three years with no worsening are they planning a “drug holiday” for you soon? Thanks again!
Yes, I have fractures, first from an accident but then I was just gently exercising and fractured my back again so they put me on meds. Now no more fractures. They haven’t said I could go off. I wish I could, I have a hard time remembering to take it.
Thanks so much for your reply! It’s actual experiences with the drugs that I am seeking and was going to ask my doctor about reclast as well. It’s great to know you’ve had such a positive experience with it and that you were able to have a good long drug holiday in between. So no horrible joint pains? Best of luck going forward!
I would go to Drugs.com and look them up. I use the APP as it is convenient; plug in the name of the drug and it lists possible side effects, mild, moderate and severe interactions as well. There is also a place that you can plug in any meds that you are on and it tells you interactions.
I also checked the websites from the drug companies via Google.
Bear in mind that if one person has a reaction, they have to list it.
Everyone is different and responds differently.
As far as reactions; none. I drink my water, take my cal- mag and go about my day.
None of these drugs are perfect, but the least side effects, the better. Read and ask questions.
I am in the same place as Holeinmyheart. I take 1 pill of Alendronate 70mg once a week. I don't know of any side effects. I have had no problems taking it for 3 years. I have Osteopenia that has not gotten worse. I'm a retired pharmacist and never felt any fear about starting it, but maybe I'm an anomaly.
Thank you so much for sharing your good experience with Alendronate. I needed to hear them I've read so many negative side effects and experience on this medication. I actually have a prescription for it but have been afraid to take it. As it seems to be the only thing my insurance will approve, I guess I need to try it and see how it goes.
All of these medications are scary and seem to have many drawbacks. It makes it hard to weigh whether they will really be worth it in the long term.
I'm a 73-year-old woman and I take nothing for my osteoporosis. I tried the Fosamax and couldn't tolerate it and I refuse to take any of the other crap...so here I sit...taking my chances.....
Thank you so much for your reply. Do you mind sharing specifically what side effects caused you to not be able to tolerate it? I just don’t want to live the rest of my life feeling like I’m sitting on a time bomb wondering if any little action is going to cause a fracture. After this horrible past year I’m so tired of living in fear and want more than ever to get back out there and live my life to the fullest!
Well...after just two doses of the Fosamax, I ended up not being able to swallow. I was terrified.....this was when I was in a restaurant with a friend of mine. She thought I was choking on food...which I sorta was. Had to spit it out into a napkin while everybody looked at what was going on. After that, I told my doctor no way. You'll find really good advice on here as to what else you can do to help your bones....
Hello everyone! I've had osteoporosis many years, & have taken Evista, Fosamax, Forteo (just 4 months, then if you stop you can't ever take it again) and a double-blind study drug or placebo for 3 years. I have refused Prolia for many years. No regrets on that. My T-score has not gotten worse, and I only take D3, magnesium, calcium, multi-vitamin, but not daily. I did have a fallin 2016 in revolving door at airport, & broke my wrist, but not from weak bones. Like Sweetsusie, I'm fine & healthy and happy. My mom, when 96, had 1 dose of Prolia, and horrid, awful reaction in hip & leg! I did not know she had gotten it. She refused further doses & is fine at 97.
I also would like a way to screen bone strength, not the Dexa scan made by and with markers set by drug companies. Great idea. Plus, if one has diagnosed Osteo., insurance companies, should cover testing at least annually, not every OTHER year. I'm 75.
Thanks so much for sharing your experience. You mention having taken three different drugs over the years. How long did you take each and what caused you to switch? Why only 4 months of Forteo? I'm surprised because I have two personal friends who had great success with it. Did you have any particular side effects with any that you used?
There have been so many recommendations on this site of trying natural aids and exercise which I greatly appreciate. But even ones very best efforts at all of that sometimes aren't enough. I have done ALL the right things throughout my lifetime. There is no family history of osteoporosis, my doctor has ruled out other contributing factors, I took ballet classes from childhood until I was 42 (I'm 65 now) as my very favorite art form and weigh bearing exercise. These days I take Pilates, yoga, and love to dance and hike. I have always loved dairy products of all kinds and love my greens, I don't smoke, and have never had a broken bone.
I have been diagnosed with osteoporosis on two different DEXA machines in two different states. My left hip is now at -3.0. My options are to continue to do nothing out of my extreme fear and risk losing the kind of healthy, active aging experience I dream of (like dancing at my 4 year old grandson's wedding one day!) or finding the courage to give alendronate my best effort. I won't know until I try. Hence the reason I am soliciting any positive reports I can find to encourage me. I don't ever want to become a burden to my family when I might have had the power to prevent it.
Amen! I totally agree. I have 7 grands, & I never want to be a burden to anyone! I stopped Forteo as I ran out of unbruised spots to inject. When I gave it in my leg, I got big red whelps. However, the reason I stopped is I was traveling a lot, & it had to be constantly refrigerated, which became impossible. Had I known that if I stopped, I could never resume, I'd not have stopped. The Evista was daily & doc changed me to Fosamax, weekly. No improvement in T-score after years. Can't remember why stopped that. Doc who sponsored that study (by Eli Lilly) was upset that they did not reveal what I'd been on for 3 years, when study ended, as they had promised! It's been a saga, but I firmly believe in vitamins, supplements, exercise rather than the money-mongers (pharma) 'solutions'. If I saw my peers praising 1 amazing drug, with powerful results, I might think differently.
I have been taking alendronate since November 2020 and so far so good. I, too, am 65. I have a -3.1 T score in my lumbar spine. I take the pill weekly first thing in the a.m. with 16 oz of water and then I go about my morning routine which tends to be walking. I have not had any stomach pain or reflux. I knew I needed medication and so I did my research on medications and asking questions of various practitioners I've known over the years. Then I settled on alendronate. What works for one person doesn't necessarily work for someone else but you have to start somewhere. I don't personally know anyone else diagnosed with osteoporosis so I had to rely on my own research. I also have other health issues I deal with and so, of course, you have to take that into account too. Everyone is different. Trust in yourself. Be well.
I had horrendous side effects on both AA and then Risedronate, could only manage 6 weeks of each ( taking weekly). Many people have no side effects whatsoever btw. I have now had a Zoledronate infusion and I have had no (touch wood) side effects at all. I thought I was going to have to take Prolia which I really didn't want but my T scores are bad so couldn't continue down the natural alternative route. Then I recklessly thought to give Zoledronate a go, and I am so pleased I did. Just so you know, there are other options if you can't tolerate oral bisphosphonates. I would also add, that I regret waiting so long as my bone density has really deteriorated just doing the natural stuff.
Thanks for sharing your personal experience. What kind of side effects did you have? I have the medication in hand and am ready to give it a try praying I’m one of those who tolerates it well but am curious about how quickly and adverse effects kick in if they’re going to happen because I’ve got a houseful of little grandbabies and family coming in three weeks for three weeks. I’m wondering if I should wait until after they leave to start. And yet I’ve heard from others that they’ve never had a problem with it so hate to keep delaying. The anxiety about starting is really taking a toll on me.
I had a whole list of side effects but it doesn't matter because when I stopped they went away practically immediately which is good to know so no need to worry.
I have just started reading and going through a book "Your Bones: How You Can Prevent Osteoporosis & Have Strong Bones for Life -- Naturally" by Lara Pizzorno, MA, LMT. I wanted more info on Prolia as my oncologist wants to prescribe it. Pizzorno goes through many medical conditions and what the meds for each do to your bones. She also addresses exercise, diet and supplements that help your bones, It is available from Amazon, and if you "Look Inside the Book," you can see the Table of Contents and the Index to see what she addresses, It is heavily footnoted with reference to medical studies and so forth.
Same book ("Your Bones") was recommended by a friend, & I've just received mine form Amazon! I've scanned but not read yet. I absolutely MUST start walking and exercising!
Dear love ballet, I too am a ballet lover. I personally don't dance but was a ballet mom for many years. I just got diagnosed with OP 2022 and am looking for success stories also. I go to endocrinologist in May and will decide on treatment. One thing that popped into my mind when reading all the bad scary reviews was: when people have no side effects and success on drugs they are happy and go about living. When people are not happy, sick and upset they post about it! Just like a bad restaurant review.
Loveballet, if your on Alendronate the information about below about geranylgeraniol will be of interest. Also investigate boron and Delta tocotrienol for your bones and joints. Always consult your health care professional before using any supplement
I've been on Forteo for about 6 months. No side effects that I know of.my scores are -4,6 and-3.6. Physical therapy taught me exersices to strengthen my core. I walk with 1lb weights on legs and sometimes arms and try to do balance exercises. Where support shoes. Days of fashionable summer footwear are over.I take D2, calcium, magnesium. I just dont want to fall. Way way back when I was diagnosed I was told Fosamax would just hold until my age caught up with my bones. I stopped taking it cant recall why and here I am. Biggest fear is ending up in a chair.
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I've read so many negative side effects and experience on this medication. I actually have a prescription for it but have been afraid to take it. As it seems to be the only thing my insurance will approve, I guess I need to try it and see how it goes.
Recently diagnosed with Osteopenia 😳
evenity patients, what's your age please? 
Can I improve BMD without meds?
Has anyone consulted with Dr. Doug Lucas's clinic?
