My rheumatologist is telling me that if I begin a five year course of bisphosphonates (maybe 7 years) at 65, I might not need to resume bone drugs ever, or perhaps until a very elderly age. This is not the impression I've gotten from what I've read. My impression is that there would be a drug holiday of up to five years and then, almost certainly, resumption of another course of bisphosphonates or beginning of Prolia. Has anyone here taken bisphosphonates for five years, gone on a five year holiday, and found she/he didn't need to go back onto meds? Or what has your doctor told you in this regard? Thank you for your help.
How Often is a Five Year Course of Bi... - Osteoporosis Support
How Often is a Five Year Course of Bisphosphonates Enough?
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Lynnel17
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All I know is they are now recommending people NOT take bisphosphonates for more than two or three years because longer increases the risk of "atypical" factures. These become a risk when new bone is laid over an increasingly aging matrix. Bisphosphates prevent normal "bone remodelling" where old bone is removed. It allows new bone to continue to be made, but prevents the old from being removed. This results in increased bone density, but after time the bones become more fragile.
Whether or not you take bone medications of any kind I recommend you also follow a plan which gives you the nutrition and exercise which encourage natural bone regeneration. This will have no side effects other than improved health! I suppose, although I don't know if there have ever been proper studies, this would also enable you to come off the drug in a more timely fashion without need to take it ever again.
Another thing which is important is that you be tested for "secondary causes of osteoporosis". If you have a medical condition this may make it impossible for drug meds to work, indeed, even the "natural" way will be ineffective.
osteoporosis.ca/medical-con...
This is exactly what my research has shown, although I have not read that eventually good nutrition and exercise will help take you off drugs for life. It makes sense to focus on health and nutrition for an aging body regardless. Also, I haven't met a doctor who didn't first look for secondary conditions but it's important to ask them non-the-less.
I'm a member of the polymyalgia rheumatica community. Because the treatment for this chronic pain condition is prednisone patients are routinely told they must take alendronic acid and often have difficulty even convincing their doctor they need to have a baseline DXAscan done beforehand. Possibly the tests run to rule out conditions that can cause polymyalgia-like symptoms would also rule out possible causes of osteoporosis (other than taking a corticosteroid treatment), but somehow I doubt it!
I think the duration depends on the type of bisphosphonates one is taking. I've been told that it is fine to take alendronate for 5 years before needing a holiday; however, one should only have 2 - 3 zoledronic acid infusions.
They seem to keep changing the recommendations. I do know that bisphosphonates stay in the bones indefinitely, even when you stop taking them, so I suppose the keep on doing whatever they do.
Regarding your comment that bisphosphonates stay in your bones, that is another thing I can’t get an answer about. Bisphosphonates don’t “grow” or “build” new bone. Bisphosphonates slow the breakdown of bone (resorption). If you take bisphosphonates and your BMD increases, all the the gains were made by osteoblasts outpacing osteoclasts. So what exactly is meant by “bisphosphonates stay in the bones” and regarding that “indefinitely” that I’ve never heard, generally they say something like up to 10 years.
todaysgeriatricmedicine.com...
They said ten years after they had been used for ten years! I think the length of time grows as time goes by. I'll seeif I can find a reference, easily. I really need to get off line.
Ah, this indicates that it stays in the bones as long as the other minerals in the bones do. It takes a little over ten years for the minerals to turn over. So I assume this means that one would have a very slowly reducing amount of bisphosphonate in the body for up to ten years after taking the last dose?
Only had 1 shot of Prolia..severe back pain…I started a rebound bisphosphonate when 2nd shot is due..been on fit 8 weeks now & have terrible neck pain which dr is saying not from Actonel I am taking…honestly wish I didn’t start any drugs ..as soon as my numbers are normal I’m off all these drugs…feel free to reach out
Hi - we were in touch last year while you were debating whether to go onto a relay bisphosphonate or not. I see you have.
I had shoulder and back pain too when I first started weekly Actonel as a relay drug two years ago. Doctors are unfortunately not familiar with all the side effects of the drugs they prescribe and everyone is different anyway, so some people have different reactions. Something you could try is to take the daily 5mg Actonel tablet. I did that for two months after not being able to take the weekly one, and was able to switch back to the weekly after a couple of months with no adverse effects. The 5mg tablet kind of slowly drip feeds the drug into your system.
I stopped Actonel after 18 months and switched to Fosamax with no initial side effects besides a bit of diarrhoea on the morning I took it each week. After 4.5 months, I switched back to Actonel due to increasing stomach pain on Fosamax which my endo thought might be an ulcer. I've had several of the Actonel side effects all over again - extreme fatigue, dizziness, headache but no back/shoulder pain this time. It's strange, as I thought that bisphosphonates were pretty similar in their composition and thus side effects, but obviously not. Just switching from one to another prompted side effects despite being on Actonel previously.
Good luck!
Hi Arcadia…of course I remember you…you were there for me when I needed advice & forever grateful!! Yes I decided to go on a rebound drug but told new Endo that I want blood checked in 6 months…if I’m out of rebound from Prolia I will go off of all OP drugs…my neck started causing severe pain about 3 weeks after starting Actonel…she insisted it’s not from the drug..I went to see Chiropractor & did not feel comfortable with him adjusting me..so I’m going off Actonel for 2 weeks to see if pain subsides..if not next step is an orthopedic for X-rays…this journey is never ending…how are you feeling..sounds lin
Like your on a roller coaster too
I'm so sorry you're having to go through this stressful process after only one shot of Prolia, but if it makes you (and your endo) feel more confident that you won't have any fractures, then that's what you must do. It's probably a good idea to stop the Actonel at this early stage for a very short time to see if you feel better. I did the same - stopped Actonel just before the third weekly tablet and felt great after a two-week break. My GP was then most insistent that I start something again - and that's when I found out about the 5mg daily tablet. It worked for me. If you're feeling better after a short break from the weekly tablet and/or have excluded any sort of skeletal or muscular problem as the cause of your pain, perhaps you should consider trying the daily tablet as I did if your endo thinks you should stay on the relay drug.
Yes, having your CTx tested is a very good idea. I have mine done every two months and the changes have often been quite significant. I would have yours done after three months, then six months. Do you have a baseline CTx taken when you were on Prolia or before? According to Prof Lamy who wrote the paper Stopping Denosumab, you should aim to keep your CTx below 400. I didn't know this at the time and mine climbed to as high as 930 before I fractured my left sacral ala. It was the sudden spike that was the problem. Keeping the CTx stable even if above 400 is key.
I see I didn't answer your message of five months ago posted on the thread I started about sacral ala fractures - sorry for that. The past six months have been rather tumultuous. After fracturing my left sacral ala in mid-September and ending up in hospital and on crutches for six weeks, I had another MRI at the insistence of my physio - and found out that I had broken the right sacral ala and pelvis as well. That was in early December. I had been in a world of pain with the first fracture, so the second and pelvic ones just kind of flew under the radar! Things are getting better now although I still have residual pain which worries me as I'm usually very active and don't want to spend the rest of my life not able to walk long distances, travel, etc. My endo wants me to continue the Actonel until mid-June, then try (again!) to wean off it. Like you, I really regret starting Prolia!
It has definitely been a journey we didn’t sign up for…sending you prayers & let’s keep each other up to date..I’ll let u know how I do after a few weeks off of Actonel
How are things going with you now, Dmck009? Did you have a break from the Actonel? Did your back pain ease off? Have you had a CTx blood test done recently?
My news is that I stopped the Actonel in early June after 27 months since stopping Prolia - and my CTx almost doubled (from 460 to 820). I got quite a fright and am now back on the Actonel until at least September when I speak to the endocrinologist again.
What a business it is getting off Prolia! Hope all is well at your end 😊
You wrote “I decided to go on a rebound drug but told new Endo that I want blood checked in 6 months…if I’m out of rebound from Prolia I will go off of all OP drug” What blood test will tell you whether or not you are out of rebound? I had no idea there was a way to determine this.
I just went off of probably after about 6 and 1/2 years. I had no issues or side effects with Prolia. Two days ago I got my first shot of Reclast to hopefully prevent the rebound that comes when you go off of Prolia, when your bone density can decrease back to what is was before you ever started with Prolia. This drug does not go through your system but through a slow infusion a 15 minutes and you take it once a year. It is to diffuse the loss of bone density after Prolia. Pretty bad side effects for the first couple days, week, some chest pains, dizziness, etc. I just had to go to sleep for about 36 hours to recover. I am hoping this works my understanding is that it will. So, my advice from what I know is after going off of Prolia you will need a maintenance drug. Good luck.
Before you even consider going onto a bisphosphonate, please make sure that it is absolutely necessary. A lot of doctors are putting their patients who only have low bone density onto these potent drugs when they could maintain or even improve their bone density by diet and exercise, as Heron mentions below. Are you willing to share your DEXA results here?
So you're only just borderline osteoporotic then, and your femoral neck is actually quite good. I would be wary of going down the OP drug path at this stage. Perhaps try the lifestyle and diet changes first.
I can't really answer your question about whether a 5-year course of a bisphosphonate is sufficient to never need to take them again or how long to have an intervening break, but I really would advise caution. Read up about the short- and long-term side effects and, whatever you do, don't start Prolia unless your bones are in terrible shape (which they probably won't be after taking as bisphosphonate for a few years as they should improve). Prolia is now viewed as a drug of last resort, for patients with severe osteoporosis, as it has to be taken for life. As I'm now finding, it's not easy to discontinue it safely. I've had side effects from the bisphosphonates too, and am terrified of getting ONJ or having an atypical femoral fracture. These are not as rare events as we're led to believe. In my small city, I know of one perosn who broke both her femurs after being on Prolia and my GP has a patient who was on Fosamax and now has ONJ due to a tooth extraction. These drugs all come with nasty side effects. You're in the fortunate position of having BMD which, in my opinion, doesn't really warrant your taking them.
Thank you, Arcadia. I appreciate getting your opinion on this. Good luck to you on your journey. You are in my thoughts.
I agree with Arcadia. I really think that older, mostly women, are part of a big money-making scheme by B** Ph**** when it comes to most bone meds. Yes, some people really need them. Most of us do not and with proper education can manage very well without. Furthermore we should be given information on how to care for our skeleton, starting at a much younger age, the same way we are taught to avoid smoking, eat well to avoid type 2 diabetes, watch for signs of stroke, etc. It's a big mistake when doctors believe that incurable bone thinning is a normal part of aging.
Thanks, Lynnel17. This whole OP thing is a minefield and a lot of doctors who should be guiding us are woefully misinformed. The input of others on HealthUnlocked in a similar position has been a life saver for me 😊
The doctors prescribe many drugs and I don't thing they know every detail about them. As far as bisphosphonates I think they all follow a standard procedure which is put the patient on it for five years. At least that was the procedure when I started Actonel. I was on it for almost 11 years. The doctor would not take me off said my numbers were not good enough and if I improved then she would take me off. I was suffering from extreme heartburn but she said I had to tough it out which my primary doctor was not happy with. I finally had to stop taking the Actonel because the heartburn was killing me. Of course, please be aware not everyone gets extreme heartburn from bisphosphonates. Many people take the drugs without incident. But I am no longer on any drugs. I haven't been tested in awhile so I don't know what condition my bones are in. I know I am taking a chance but I have had it with the drugs. There are no specialists out there for osteoporosis and I sometimes feel like we are guinea pigs for the drug makers. Hopefully, there will be more help out there in the future.
Cologne, Sorry to hear about your experience. Thank you for sharing it. Good luck to you.
"I sometimes feel like we are guinea pigs for the drug makers" -- think a lot of ppl would agree with you on this one but ultimately, the doctors do the prescribing and they really should be more careful.
Prior to my "osteoporosis" diagnosis, I was seeing my endocrinologist because I have hypothyroidism, for which I take 75mcg of Levothyroxine daily. Levothyroxine is supposed to be taken on an empty stomach--generally ppl take it daily, 1st thing in the morning, with plenty of water, and then wait 30 minutes before eating. When my endo prescribed the alendronate for my "osteoporosis", I was supposed to take it once a week, on an empty stomach, with plenty of water, and not to lay down after taking it. I asked my endo which pill I should take first on the one day a week I had to take both the Levothyroxine and the Alendronate. He told me to take the Levothyroxine 1st. To be sure he had it right, because he didn't seem confident when he told me, I asked the pharmacist, who told me the exact opposite. She said to take the alendronate 1st and after 30 minutes I could then take the levothyroxine.
When it comes to meds, always ask a pharmacist. They know way more about drugs and their potential interactions than doctors do.
I think you are right the pharmacist has more knowledge of the drugs. More often than not the doctors are rushed and things get mixed up or lost in translation. As I said before it would be helpful if there was a doctor that could specialize in osteoporosis and give proper guidance.
Cologne, totally agree that there should be a branch of medicine solely focused on osteoporosis. Seems like it should fall under orthopedics.
Women in the US are told to have annual mammograms and yes, breast cancer is a big deal but when you look at the numbers, women are way more likely to suffer from bone loss and fragility fractures than they are to have breast cancer. And the pathetic advice from 99.99% of all doctors--walk, lift light weights, and take calcium and vitamin D--is not remotely enough to prevent osteoporosis or reverse bone loss. It's shameful that doctors don't see how sad this is. Additionally, you'd think the gov't would see how much osteoporosis costs us (costs the country).
You would think orthopedics would be the logical place to treat osteoporosis. However, I read an article some time ago regarding osteoporosis and it went on to say that the orthopedic doctors don't want to be bothered treating osteoporosis. So it's left up to the Gynecologists to treat it.
I’m sorry to hear of your problems with your health and your interaction with our inadequate healthcare system. This forum provides so much helpful information for all of us in search of support and remedy. We are on a journey without a map … thank you for sharing.
Lynnel17, I've not heard of the 2 year recommendation HeronNS mentioned.
My endocrinologist told me I could take alendronate for 5 yrs and then I would need to be stop because of the potential for atypical fractures. I was only on alendronate for 1.5 years and I quit it because it caused digestive tract issues. I stopped taking it in July 2021 and, per my endocrinologist's recommendation, I had a zoledronic acid infusion in November 2021. My endo said I could have 2 to 3 infusions and would then have to stop the infusions because of the potential for atypical fractures.
I know 4 ppl who have taken alendronate, 1 of the 4 has been on it for approximately 4 yrs and is still taking it (although I have been encouraging her to take a holiday from it). Another, and older aunt, took if for 5 years and then her doctor moved her to Prolia. I have been helping her recently and, given her DEXA info, I'm not sure if she ever had osteoporosis and I think that maybe her doctor should have told her to take a holiday after 5 years of alendronate rather than prescribing the Prolia. Now, after 2 yrs on Prolia (4 infusions), she is back on alendronate as her relay drug so she can get to a holiday.
The 3rd person I know is an older 1st cousin. Approximately 15-20 years ago her doctor told her, "you'll probably need this in the future" and put her on alendronate. She took it for 10 yrs and when she changed doctors her new doctor took her off of it. It probably should never have been prescribed for her but she has had no fractures or issues.
The last person is a neighbor, a very thin petite woman (5'1" ish) whose doctor put her on alendronate in her 50s right after she went through menopause. She took the alendronate for approximately 20 years with no issues and her doctor recently told her to take a holiday.
Note, I definitely think taking any of these drugs long term is a bad idea. Additionally, since having received the zoledronic acid infusion, I've learned that DEXAs can be wrong for smaller ppl (I'm 4'11"), I've also learned about Dr. Ott's BMAD calculator, I got a copy of my full DEXAs and ancillary data and entered the data in Dr. Ott's BMAD calculator, and I now believe that I should not have been prescribed the zoledronic acid infusion, and I do not plan to have a 2nd infusion, at least in November 2022.
When I was 1st told that I have "osteoporosis", I asked my endo if there were any natural ways to reverse bone loss. He offered no help in this area and simply pushed the meds. I now know that there are ways to naturally improved BMD and that is what I am focused on doing for the next few years. If natural means don't work for me and my bones worsen, I may reconsider osteo-meds.
For the benefit of those reading this thread, I used only natural means and improved my bone density (same machine) in one year from -2 to -1.6. That year was early on in my taking prednisone for PMR and for over half the year my dose was over 5 mg. So it IS possible to improve bone density without drugs even if doctors don't think you can. I didn't know until later that it is also a good idea to have secondary causes checked, and not assume it is simply aging or, as in my case, taking prednisone, or some other medication. There may be another issue in play. Fortunately I don't seem to have had any secondary causes, other than the aforementioned age and medication and my self-prescribed treatment worked. This was the year 2015-16. I had planned to have another DXA scan after a further five years but covid has kind of got in the way. However all seems well.
I posted my story here:
I am 65 and taking Boniva presently and a variety of others in the past. Well over 5 years now. All I keep hearing every year from my Dr is. Continue with the Boniva. You are no worse and still have osteoporosis. End of story.
I can't wait to read comments on this because that's what I was told but it doesn't appear to be true at all from what I've read or women I've talked to.
My doctor said the same thing to me last month but I can't find research that shows that is true. From what I've read, it's exactly what you described and it would be on and off osteoporosis meds for the remainder of my life and that the fake new bones I will be producing from the meds are more brittle than normal bones and may fracture. Has anyone else found out that this is true?
I took alendronate for 1.5 years, experienced digestive tract issues, took a 4 month holiday, and had 1 zoledronic acid infusion in November 2021. My endocrinologist was expecting me to have another zoledronic acid infusion in November 2022, but I opted not to have it.
My endocrinologist said it is safe to take alendronate for 5 years but one should only have 2 or 3 zoledronic acid infusions.
A senior relative who also has bone density issues (no fragility fractures) took alendronate for 5 years, stopped for a year or two and took Prolia for 2 years, so 4 injections/infusions or 1 injection every 6 months for 2 years. Her last Prolia injection was in the fall of 2021. In March 2022, she had a DEXA scan and her numbers were pretty good--I can't remember the exact numbers but seems the lowest scores were osteopenia and some areas may have even shown that she was back in the normal range. Instead of a 5th Prolia infusion, she went back on alendronate to prevent rebound fractures. She has another DEXA scheduled for March 2023 and if everything looks fine she will continue taking the alendronate until April 2024 and then she will be able to quit all osteomeds for a while.
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