bisphosphonates

[Raleigh59]

Is anyone happy on bisphosphonates ?

[Fruitandnutcase]

I’m sure a lot of people are happy on them. I have a friend who stopped her risondrinate infusions last year and is desperate to get started on them again. I have other friends in my town who take them and they are all perfectly happy with them and don’t seem to have any of the unpleasant side effects I had. I’m the only person I know who stopped taking them. It’s something that if you don’t try you won’t know how your body will react.

[Raleigh59 in reply to Fruitandnutcase]

my friend’s friend’s mother had her jaw drop out on one of the medicines. And the mother started out happy and things kept getting worse . My friend’s friend sued the company for her mother

[Fruitandnutcase in reply to Raleigh59]

I still know a lot of people who are perfectly happy to take bisphosphonates and who think I’m seriously odd because I don’t want to touch them. I find that worrying when you know about bisphosphonates.

I wouldn’t say I was ever happy taking them - I had watched an elderly aunt take them for years and carry on crumbling until she needed oxygen - but I was prepared to try.

I think the trouble is that if you ever need to take a relay drug for whatever reason then it seems that that is likely to be a bisphosphonate.

[dcdream in reply to Fruitandnutcase]

I watched this exact scenario with my mom. Took the meds route and began to fall at 85 fracturing her shoulder and wrists. Continued to fracture since 85. Had a reclast infusion two years ago and broke several more bones since then along with dropping 5 inches in height and developing at hump at 89. Currently, mom is almost 91 and has difficulty breathing due to loss of height. Began taking meds in her early 70's. Cycled off and on them as well. She developed a few other health conditions related to taking meds which then required additional meds to treat those new illnesses. So, although I know many on such meds, ask them after 20 years if they are fracturing. I'm seeing most women I know on meds begin to fracture in their 80's. Disappointing.

[Raleigh59 in reply to dcdream]

I agree - the bones are strengthened by medicine in a fake way . It’s not real bone, it’s brittle bone. The world has not figured out how to help us grow real bone back . That’s the issue. We all on this board want to build healthy bone. If we use medicine and ALSO learn all healthy techniques like I was watching a video on healthy walking . We can’t shuffle, or walk widely or with toes first. We have to walk more in a straight line, with heals first. And not shuffle, we must pick feet up . As we age this all becomes harder to do but tripping occurs when we do not pick our feet up or if we do not walk with heels first. I am learning so much I am thinking of start to public speak to aging groups on this important issue of safe healthy walking .

So again , if we decide to take medicine and do all healthy safe measures we are ok I think. That includes enough protein enough calcium enough collagen and enough really getting sunlight and exercise at least long distance walking .

[dcdream in reply to Raleigh59]

At this point, this is the best advice on this matter.

[Fruitandnutcase in reply to Raleigh59]

After I fractured my wrist in 2020 my Pilates teacher / physio emphasised how important it was for me to walk properly at a normal speed. She said that people who are too ‘careful’ and walk slowly and not at a normal speed in case they fall are very likely to fall and hurt themselves again. We do a huge amount of work to strengthen our shins, feet and ankles in Pilates.

[ORdogmom]

so, I was really worried about starting them, after all I have read here, but decided to at least give them a try. It has only been a little over 3 months now. My body is sensitive, and usually is very clear when it is unhappy with something I decide to try, so I wanted to start with something that was not going to stay in my body for many months, just in case it felt wrong.

I have had absolutely no adverse reactions, so far. I have been very good about the amount of water I drink, and usually do not eat or drink for an hour or so after.

I just got my second Bone Turnover Marker test done. My Rheumatologist does not usually go that route, but I requested, and he only ordered C -telopeptide done. Well, normal range for post menopausal is something like 200-1050, and my initial levels were 851 if I remember correctly (you want lower numbers). After 3 months of alendronate, my numbers fell to 221.

If I do not have any reactions, I will take for two years until I get my next scans done, and then decide from there.

I am also doing everything natural I can do. Calcium, Vitamin D, K, strontium, collagen, natto. I tried the prune thing, my tummy was not happy.

[Fruitandnutcase in reply to ORdogmom]

I’m sure there are lots of people out there who are like you and that’s good. I just felt ill all the time, the alendronate changed my personality altogether and I just couldn’t face feeling like that for the rest of my life.

So I think if youre one of the people who don’t have side effects then you’ll be happy - pretty much the same for anything you take.

[ORdogmom in reply to Fruitandnutcase]

I fully understand. That is why I would not take something that you take only once a month, or every 6 months, just in case I had that type of a reaction. I just want to put out there that no everyone reacts adversely to these drugs. And time will tell whether I will stay on them for 2-5 years, or not.

[Raleigh59 in reply to ORdogmom]

if I do the drugs it can be daily or weekly and even that I just am scared of them . Idk one can have a jaw or dental problems in the future if you take medicine or if you don’t take medicine one can have bone or losing height problems.

[Raleigh59 in reply to Raleigh59]

someone said that in India and Japan they take 5 mgs of the medicine every third day

[StrongFuture in reply to ORdogmom]

I just wanted to comment on your prune experience. I don't know how many you were trying to ingest. I was trying to eat 5 a day and my tummy also could not handle it. I backed off and now I do my best to try to eat two a day. The tummy is much happier.

[ORdogmom in reply to StrongFuture]

I did the same thing, trying 10 my first day. Silly me. I have tried to decrease my intake, trying the one or two a day thing, but I am thinking I should just give it a rest for a few weeks, then try again.

[Raleigh59 in reply to ORdogmom]

apricots have calcium too and nobody talks about them

[ORdogmom in reply to Raleigh59]

is the prune thing just about calcium, or is there something else in them that assists bones?

[StrongFuture in reply to ORdogmom]

There a various studies that show that prunes can prevent bone loss and preserve bone density.

[Help_My_Bones in reply to StrongFuture]

ifyouspreadthemout,ithelps.

[dcdream in reply to ORdogmom]

that's great news and probably reflective of most on the meds.

[ORdogmom in reply to dcdream]

yes, that is all the meds. All the supplements will do is help build up bone, but this shows that the breakdown of bone has been impacted.

[Raleigh59 in reply to ORdogmom]

is a 220 number better ?

[ORdogmom in reply to Raleigh59]

yes, it means the bone turnover has been cut by 2/3 of what it was

[Raleigh59 in reply to ORdogmom]

Ok so it it means good that you are not losing bone ?

[ORdogmom in reply to Raleigh59]

exactly, not losing bone like I had been

[Raleigh59 in reply to Raleigh59]

excellent and that’s on fosamax

[ORdogmom in reply to Raleigh59]

yes

[Kaarina]

More than likely those that have decided to take OP medication and are having no problems with it have no need to join a forum like this and are getting on with their lives. If they did join initially they would probably have no need to post now for the same reasons. Very few people let us know how well they are doing on a certain drug and that they are suffering no side effects. It would be good to hear some positive stories every now and again!

[dcdream in reply to Kaarina]

Totally agree. Folks on meds, without any side effects, are not on this forum most likely. I come to this site to read about positive drug free results from folks, so I can incorporate such strategies into my own life.

[Raleigh59 in reply to Kaarina]

the Mayo Clinic osteoporosis site has positive results by people taking medicine

[Aerobics-Instructor]

I'm very happy with my results from taking biophosphonates (alendronate -- aka Fosamax). No side effects and my scores improved markedly after 2 years. But I also took supplements.

June 2021: T -3.2 spine, T -1.6 femoral neck, so I started this regimen:

April 2023 (Same machine, unless they got a new one. Different operator): T -2.4 spine, T -1.0 femoral neck.

Supplements: Vitamin K2 (MK-4 and MK-7, 100 ug); Melatonin (5 mg); Vit D3 (3,000 IU’s or 75 ug ); Turmeric (500mg, w 450 mg curcuminoids, 2x/day); Hydrolyzed Collagen (8mg). No calcium, as I have hypercalciuria.

Impossible to say whether the improvement was from Fosamax, the Supplements or just measurement error, or a combination. FYI- My bone turnover scores were low even before taking the drug, and got lower on it. I've decided to continue everything for 2 more years and hope for even more improvement

[Hidden in reply to Aerobics-Instructor]

Is turmeric supposed to be beneficial for bone health?

[Aerobics-Instructor in reply to Hidden]

Yes, some research from Genoa, Italy found a link. I don't have the original study, but it should be pretty easy to find. Here's a tangential reference to it:

Recent research out of Genoa University has shown that taking a turmeric supplement improved bone density by up to 7% over a 6 month period.

The study involved both men and women with an average age of over 70 suffering declining bone density but were otherwise healthy. Ultrasound scanning assessed bone density in the jaw, heels and fingers at the start of the study and again 6 months later. The results showed that those taking a daily supplement of turmeric increased their bone density by 7%.

The results of this study supports previous animal based research, which has suggested that curcumin possesses bone building properties by working to reduce the rate of bone reabsorption.

[Hidden]

In my mid-50s, I suffered 5 pelvic fragility fractures while doing home PT exercises with resistance bands. That is when I found out I had osteoporosis. My mom was a 40 year smoker and did have a dowagers hump and lost a lot of height in her later years. I did not use HRT (I never did well with exogenous hormones). I had had two prior DEXA scans - both in osteopenic range. The one I had after all of the fractures (just 15 months after prior DEXA) had only one site at -2.5 - other scores were osteopenic. I have seen so many specialists and many secondary conditions were ruled out in the process. I also found that I had lost 1-3/4” of height since high school (last time I was measured). I was able to get rheumatologist to order bone turnover markers, though not true baselines since I had multiple healing fractures. I found a clinic that did DEXA w/TBS and had another DEXA done. My TBS scores were in the -4s & -5s! So my bone quality/microarchitecture was much worse than my BMD - likely why I fractured so easily. I completed 2 years of Tymlos w/o any improvement (but had no further fractures), then 12 months of Evenity injections with very little improvement (but no new fractures). I was then faced with the only tool left - bisphosphonates (I chose not to go the Prolia route). I was very scared to begin treatment with bisphosphonates but with my fracture history I felt I really had no choice. I have GI issues so oral bisphosphonates weren’t an option. I had my first Reclast infusion last fall at age 59. I did have pretty uncomfortable side effects for a few days, but otherwise haven’t had any known issues otherwise. I do see my dentist twice annually for cleaning/exam - it is important to maintain good dental health. I do still worry about long term potential side effects but the fractures I suffered at such a young age were extremely painful (one never completely fused) and have limited what types of exercise I can do now. I am very careful to avoid falls. I do worry about whether my bones would heal if I had a fracture or ever needed a joint replacement. I just simply had no real alternative. So - I am thankful for bisphosphonates but really would rather not need treatment. I really hope to maintain as much independence and mobility as possible, for as long as possible. I already deal with quite a lot of chronic pain from damage from prior fractures and degenerative issues in my spine. All of this to say: definitely much to weigh and each individual has to consider all of their personal factors.

[Raleigh59 in reply to Hidden]

thank you for sharing

[dcdream in reply to Hidden]

Thanks for sharing your story and I'm sorry you've had such a difficult time with your bone health. Hopefully, you will begin to feel less pain and be able to maintain strength as you age. Good luck and stay positive.

[Hidden in reply to dcdream]

Thank you - I’m trying.

[DonEnrique]

Wow. You've gone down quite a challenging road these past few years. Seems like you have done almost everything possible to address the issues especially given your bone fragility. The positive outcome is that you have not had a fracture which is no doubt due to the drugs and your self care. I hope you are able to maintain this stable condition for years going forward. Wish you the best.

[Hidden in reply to DonEnrique]

Thank you - me too.

[photographer94]

hello everyone, I was at -2.7 when I began once/week fosamax one year ago. I also started strength training 3 months ago. I am now at -2.3. I'm unsure if the improvement is due to the strength training or the fosamax orboth but would prefer to discontinue the fosamax. I have had no difficulties w/ fosamax (except for some bloating the first few weeks) but I worry about jaw and femur issues down the road.

[Readd in reply to photographer94]

what kind of strength training do you do? I just got diagnosed and I feel so overwhelmed.

[Raleigh59 in reply to Readd]

I was just today realizing that you can mimick the osteo strong program quite specifically at a regular gym

[Hidden in reply to Raleigh59]

Which particular machines do you use to mimic Osteostrong? I did a complimentary session at one in my area but did not use the machines (I just had them demonstrate to me how they work as I was concerned about injuring myself due to my bone fragility).

[Raleigh59 in reply to Hidden]

the circuit room has machines that you just push force against - you can find machines like the one where you push your feet against and hold it there for hoe long did osteo strong, 60 seconds each ?

[Raleigh59 in reply to Hidden]

I did the osteostrong trial visit and was scared th machines would break my bones but I didn’t break anything but I then learned on a video , some people have

[Raleigh59 in reply to photographer94]

what was the bloating like ?