been reading on canceractive regarding bisphosphonates for osteoporosis and that they make brittle bones worse, and increase fractures and stop bones from remodeling, why don't oncologists tell you this instead of promoting bisphosphonates.i have severe osteoporosis I am ok at the moment but what can you do, I have had 1 reclast infusion don't know what to do when my second 1 is due.
reclast/zoledronic acid : been reading... - Bone Health and O...
reclast/zoledronic acid
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Bisphosphonates work by interrupting the normal bone cycle. They prevent bone breakdown, which in turns results in less new bone being formed. This means you gradually retain more and more older, poorer quality bone, probably why long-term use can cause unusual fractures. In the short-term, up to 3 years, it's been shown that bisphosphonates reduce fracture risk by about 50%, so you're less likely to fracture but it could still happen. If you Google "NICE bisphosphonates patient decision aid", you'll find a very helpful guide to how effective or otherwise bisphosphonates are. NICE is the UK official body that publishes health guidelines.
been reading nice didn't make any difference still can't make my mind up,my scores are-2.5 4.1lumbar spine, bmd at femoral neck 0.593,vfa superior end-plate deformity at t12, do you think i need reclast.
I think the best thing for you is to contact the osteoporosis society the website is:
They have a telephone number to a specialist osteoporosis nurse the number is: 0808 800 0035
However you have been anti the infusions before you even started them so I personally think you have made your own mind up about continuing, just remember the choices are limited and there are risks and side effects that come with every medication. Good luck
yeah, but I am speaking the truth that reclast stops your bones from remodeling, and that it only strengthens old bone and after a while bones become more brittle, there is other posts on here saying the same thing.
I’m not saying you are wrong I’m just saying speak to the osteoporosis society. No one on here is medical so they are not best placed to answer your question and it doesn’t sound like a question it sounds more like you are stating a fact……so that is why I thought the osteoporosis society will know for sure and be more likely to be able to help you.
Can this number be called from the United States? I've never made an international call. Wonder if there is a charge from cell phone.
I am not sure sorry I have never made an international call maybe have a Google to see if there is an osteoporosis society in America. Sorry I can’t help further but it’s worth a try.
You are correct and I think a lot depends on what you are prepared to put up and how ill you feel at the moment along with knowing what risks are involved if you stop.
You have only recently had your infusion so that is you for almost a year and 🤞 it will all settle down and you will feel much better. You already have a lot going on regarding your health (I think)
I’m sure you know all the risks of stopping and you can make your final decision about your next infusion when the time comes but try not to worry about it until nearer the time you don’t want to spoil your life worrying about it now.
thanks but why don't doctors tell the truth regarding o/p drugs and what they have done to a lot of people, after my first infusion last April I was in hospital the next day peeing blood.
I know how you feel, I think doctors look at stopping you fracturing and keeping you out of hospital with hip fractures etc but don’t look at how terribly ill some people feel. So I know what you mean.
I was treated for a few conditions and various drugs that can lead to osteoporosis and no one ever mentioned to check my bones. It makes me angry that doctors treat ‘their’ part of you without mentioning the downsides or as you say don’t seem interested in the side effects.
I took AA for four months and felt really, really bad, so ill I really felt like I was just waiting to die, it was horrible. Eventually I decided I’d take the risk and stopped and went back to feeling like my old self. It’s a terrible decision ti make you’re damned if you do and damned if you don’t. You’re scared to stop and scared not to and I still come under pressure to start again from medical people I’ve been offered infusions too but turned them down.
I didn’t realise it was back in April you had your infusion it doesn’t seem like it was so long ago although it probably feels it to you. Good luck with it all, I feel for you.
I too have read all the research and unfortunately, we are guinea pigs for the bone meds companies who do not continue research on how these two decade olds meds impact long term health for those who cycle on and off. I have seen my mother's impact since she did so with the meds. She began fracturing around age 84 and now is 5 inches shorter and has health issues created by the op meds. I am severe osteoporosis as well but have decided to use other proactive approaches with exercise, posture, diet etc. to help me from fracturing. There are no easy answers for you and we all live with the consequences of our decisions. I wish I had more to tell you but it's a tough decision for us all.
yeah it's not good I was in 2minds for a long time whether to have the infusion but I've started now, it's pot luck what side effects you get,I have been referred to a lung specialist a bit out of breath on my daily walk, I can do a few exercises, just have to keep going best u can.
There is an American society called Bone Health and Osteoporosis Foundation (used to be called National Osteoporosis Foundation). Their phone number is 1-800-231-4222.
and also make certain you "fall proof" your home, which often can be problematic. There are tons of information on how to do so and worth reading and making said changes. My mom starting taking the OP meds in her 70's, off and on cycling, then developed severe Gerd and had to begin meds for that (which also harm bone health), she also developed heart issues (she never had prior) with her valve. She began falling at 84 and was not even in the osteoporosis range until she turned 86. Unfortunately she was a victim of overzealous doctors who gave OP meds to folks with only osteopenia. She has fallen and broken bones since turning 84, prior to even hitting the -2.5 range. Just her experience but not a good one. She had a reclast infusion last year as well. She cycled off and on in her 70's with fosamax.
Was just looking at my mom's DEXA results, last year at age 82. She was diagnosed with osteoporosis in her wrist after she broke it, about 10-15 years (?) ago. She went on Fosamax, which she took DAILY, for several years. At some point after that, she went on Prolia. (Funny, she won't do supplements, vaccines, NSAIDs, but she embraced the OP drugs without hesitation, apparently.) I don't know what her spine or hip scores were from the beginning, but her lumbar spine--t-score, last year, was -.7, and her Z-score was +2 1. Her hip was -1.6, femoral neck -1 2. Her right forearm is still -3.6, but evidently that's still a .7% improvement.
She's fractured nothing, lost no height to speak of, and seems to feel pretty good.
She's the drug company's dream!
I have to think her spine and hip were never that bad, and that taking these drugs was probably unnecessary. Still, wish I could be as well off as she is. (My lumbar spine, at 61, 10 months ago, was -4.6, and I'd already had fractures, though they'd not been discovered yet. My hip/femoral head -3.3/-3.5. I have another DEXA scheduled for January. I've mostly been going the heavy duty boron, K2, VitD, all the "natural" options I've read about anywhere, cleaned up my digestive isdues, hopefully, but, I have broken down and have taken the reflex prescribed Fosamax. Endocrinologist recommended Evenity but insurance won't cover, and no one has followed up with me since then, so I decided just to see what the natural route would yield, since it all has taken so long, I'd practically already gone a year. But then I got a new fracture and this one hurts (6 weeks in) and PCP said "It will at least help with the pain," (if it does, I can't tell,) so I started taking the Fosamax, again. My gut says my scores are going to be worse, but then again, the wonder may be that I have only had as few fractures (3 confirmed, 4 with this new one,) as I've had; even a 10% improvement will still have me well into the fracture zone? We'll see.) Anyway, you don't want to fracture--I'm buying that angle, for sure. Just, I'm not sure if anything will stop it if the fracture cascade has already started.
Just...throwing my cent down.
I'm in a cascade, nothing I've done to date has stopped it. T6-L1, with L3 compressing. Had surgery today, again, and one of the kypho'd ones re-fractured! Didn't know this could happen. I am taking Tymlos, surgeon says bones look improved, but still osteopenic/soft. We had a discussion on the Bisphosphonates...he said "no" they are dangerous, and inhibit healing from bone surgery, inhibit fusions as well. Ironic. I have healing fusions, 4 of them, and Endo wants me on a drug that stops that process! I'm on Tymlos for another year, so not worried right now. The six failing discs will need fusions in the future, but not until bones get stronger - that I am worried about! Fractures are the worst pain I've ever had, by far worse than extended labor in childbirth!
I'm so sorry. At least you have people trying to help, let you know what's going on. At least my fractures aren't as bad as childbirth, 😂 but I'm still young in this process, too. That's what's scary, I think, knowing that I've only just begun, have decades, potentially, ahead.
I can't imagine being young and dealing with this...so sorry you are going down this road! I've had some uneducated doctors, dismissed me. Mine started with a parathyroid tumor that my PCP said, "take fosamax, less stress, more exercise." Not going to fix a parathyroid tumor! Endo is right out of residency, she's babbling the Pharma talking points - told her to talk to my surgeon, she got real wild-eyed...he researches everything, excessively! These doctors need to stop relying on Pharm Reps and start reading again.
I hear ya!
My surgeon told me the Bisphosphonates inhibit healing with bones, and inhibit fusions...to avoid them. I take Tymlos right now, for another year. My Endo wants me on Prolia, told her no way, don't even push that agenda. So now she's pushing Reclast, a year out. Told her she needs to talk to my neurosurgeon, who has studied bones, not just talked to Pharm Reps.
but if you have severe osteoporosis and a bit breathless surely you have to have treatment, I had reclast last April can't feel if it's doing any good.
Not sure what a bit breathless means...sorry. But I will not take a drug that has a risk to my bones, another major fracture, especially the femur, would do me in. My legs are strong, and I need to keep it that way. I also have AS, Ankylosing spondylitis, and can't get answers how any of the BIS drugs work with AS. If my surgeon wasn't running MRI/CT Scans monthly, and going in surgery every 6-8 weeks, where he can use the OR scans inside...I wouldn't know how well Tymlos is doing. He thinks it's 15-20% improved...but said to stay on it another year or more.
when I go for my daily walk after about 100yds I get a bit breathless but keep going,
Oh, okay, makes sense! Good you keep going. I use hiking poles, they help keep me straight on in my walking, give arms and upper back a work out, but they also give me the comfort of steading me if I hit a patch in the road that is uneven. Sometimes I'll get a bit winded, if I'm going at it too fast, but lately I'm just happy to finish my mile walk. Surgeon said walking is good for us, and gradually add some weight, like those weight jackets. Can't do right now, fresh off surgery.
How do you have a relationship with a surgeon? Not sure I want one, but what yours has to say is interesting. I'm currently taking Fosamax mostly because I don't want to throw down another obstacle to being heard/getting help, and these days, not complying with a recommended drug regimen seems to brand one as "difficult" if not full on worthy of whatever ill may befall one. But I definitely am not thrilled about the prospect of making my bones worse. It seems logical that someone who's actually seen the bones with his/her own eyes might have some knowledge that even the experts (endocrinologist?) don't have.
We worked at the same hospital way back...then I consulted him for neck issues, first surgery with him 2014....cervical 5-6 completely compressed, nothing but pieces left. Damage from parathyroid tumor, so two more surgeries with him in six months. He's very interested in finding root cause, and has been keeping me up and going for nearly 10 years, 12 surgeries. He's a one in a 1000 for sure. But having worked in healthcare, having to deal with doctors 1:1, and difficult situations with doctors, it's been easy to talk, ask questions, and expect follow-up. Yes, you can get labeled difficult, doesn't bother me...I take the time to read everything on medications before I agree to taking one, I have too many drug allergies, some with fatal consequences. I really don't think my new Endo understands how these drugs work, and what they can do. Big Pharma "owns" medical schools, so they really spend a lot of time learning which drugs for which conditions, instead of root cause and resolve a condition. My surgeon said years of failed fusions due to bone density problems took him on a path to learn more about repairing of bones and nerves. We need testing that is more definitive, to be able to see 3D. DEXA is not accurate, has issues, but so do MRIs, CT scans, and we need them priced for all to afford, as bone health should be for everyone!
Ah, so you had an "in" and someone able to empathize, it sounds like, to boot.
I broke my wrist in late 2019, had surgery to fix it. I was worried someone might mention osteoporosis--I had had one significant event with my back that didn't "read" osteoporosis to ME, but I nonetheless didn't want to repeat it, so put my hand down to break the fall (slipped on ice,) and bam, broke my wrist instead. I didn't ask, but I did see they wrote "osteopenia" in my chart, for my wrist only, I presume, and I don't even know how they deduced that. From that, I figured I was good to go.
Now, at least based on t-scores, I have to think I already had severe osteoporosis in my spine, and I WISH someone would have said something. I had no idea that osteoporosis could be this challenging, maybe especially because my mom and grandma had it and it didn't seem to impact my mom at all, and my grandma not until she was really, really old. But, here we are. I claim I like/need a challenge, well--I got one.
What's also sad, and now I have no idea where and whom I've already said what, so apologies if I'm repeating myself, but my husband is why I know I have osteoporosis, and that's because he fractured two vertebrae attempting to slalom ski (which he's expert at, so definitely a surprise 5hat he struggled.) He asked for a DEXA, found he has osteoporosis in his spine, at age 60. I didn't know what to think then; he still doesn't really have on-going issues with his back/related to those fractures, yet, and he said the fractures were like a backache. Maybe that's because he IS stronger, (he continues to strength train as he has done since before I met him,) maybe his daily life doesn't put stress on his back the way mine does, I don't know. What I do know, now, is that a guy with osteoporosis at age 60 has to have something going on, but the medical professionals he saw just prescribed Fosamax and sent him on his way: no tests, no questions, no education. We now have the same PCP (through his company health care center,) whom I saw first. Not sure why he was so...antagonistic (it seemed) right out of the gate, except maybe he knew I'd gotten very upset with my prior PCP, who was also at the same health center, and in my opinion his attitude bordered on malpractice, (if that's possible.) But he did offer me some tests I hadn't had, including parathyroid. But my husband still has been offered nothing, (except, he said, he felt like the guy had done some research?) You'd think they'd want to know: why does a 60 year old extremely healthy (if slightly underweight) male get osteoporosis? Especially if he continues to be a valued employee? If his were to progress like mine, he could end up disabled, could potentially severely injure himself on the job (since it takes almost nothing, right?) You'd think they'd like to prevent that...but maybe they don't?
I sometimes think maybe my mission is going to be "osteoporosis awareness!" Just, so far, it still feels like I'm dealing with a wraith, don't even know where to go, who to see for my own issues. Hence my asking nosy questions and repeating myself.
Thanks for bearing with me!
You've definitely had some poor health care experiences! I had a few along the way, I guess that's how we learn so much, we have to fight for our services! My wrists surgeries were painful, a break sounds miserable as well. From that parathyroid tumor, which it takes a lot of testing, more testing and a specialist in most cases to get a diagnosis. I had to diagnose myself, went through three docs who told me to reduce stress, get some exercise and rest. I'm surprised at your husband's diagnosis, and no interest in finding out why from doctors....well, I guess I'm not surprised anymore! I feel the same way, we keep sharing, spreading information, I tell my friends do not ignore your bones, when it hits you, there's little you can do to get it back and be "normal" again.
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