Hi, I was recently diagnosed with osteoporosis and was not able to take Fosamax so Zoledronic Acid (Reclast) has been prescribed. I am not sure about having these yearly infusions due to some risky side affects and unknowns I have read about. So I have been looking for more body friendly solutions. But at the same time I worry about making the wrong decision.
Has anyone worked with a program headed up by Kevin Ellis known as the Bone Coach?I have been thinking of trying this program instead of drugs.
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Sandy33
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Hi, not worked on the Bind Coach programme and was diagnosed with osteoporosis some six years ago. To date have avoided medications but am now being strongly advised to start on Alendronic acid which I am not keen to do. Would be interested in following your post 😊
Hi Misty, I think I’m going to try the natural route for at least a year at this point, but I have been back-and-forth and changing my mind quite a bit. I get the impression that a couple of the side effects from Zoledronic acid are more prevalent than they say. Especially concerning jaw bone death. Not sure how many people on the treatment have needed dental work also. So hard to say how prevalent it might really be.
I’m guessing your numbers must be pretty good to have had osteoporosis for six years and avoided any medication. What have you been doing instead?
Hi Sandy, my lumbar spine has been at -3.5 for since I was first diagnosed but apparently my L3 and L4 have deteriorated to c. -4. the femurs are in the osteopenic range. I changed my diet to a gluten free one. I avoid dairy milk, refined sugars and convenience foods cooking all my food from scratch. I've always been a vegetarian. As for exercise, I walk and practice tai chi regularly. My lifestyle has also changed in that I don't stress over things like I used to. I supplement my diet with a liquid Vitamin D and K2 supplement from October to end of March. I set up a blog on eating healthy, see:ushasveryown.com
for my story information about how revamped my families recipes.
I really do not want to go on any medications for osteoporosis currently available to me as an enormous amount of research has put me off. I am quite inquisitive with a scientific background, I had a career as a microbiologist.
I used to take Vitamin K2 in spray form plus a drop of vitamin D emulsion. However, I recently learnt the vitamin D emulsion was made from lanolin from sheep wool so have started to take vitamin D3 plus vitamin K2 in a combined liquid form. The vitamin D3 in this new formulation is derived from mushrooms.
Just curious why did you quit drinking milk? I’ve heard this a few times but not entirely sure why it is bad.
Since you are basically vegetarian, are you able to get enough protein? What types of vegetarian protein items do you eat? I have found it very difficult to get as much protein in a daily diet as I need to. Not purposely, but before my diagnosis I was basically eating a vegetarian diet and when I look back at it I realized I was not getting enough protein.
Thanks for sharing your blog, I’ll take a look at it.
Sandy, I gave up as dairy products can cause inflammation in the body for some individuals so aggravate symptoms of RA. I find I am okay with dairy cheese and butter but not milk.
I eat lots of different types of nuts, peas, beans (kidney, haricot, black), chickpeas, lentils and certain flours such chickpea and teff flour. I incorporate a fair amount of flaxseed in my diet too. I have a lovely recipe for incorporating nuts and flaxseeds on my blog for a type of Indian energy ball known as Pinnis. Tofu is a great source of protein too.
Hi Sandy. I finished a two year course of terraparatide the end of last year. I had no problems at all with it. I’ve now this year been on Denosumab. I’ve not got any problems taking it but I have had further broken bones. I did think about going naturally but my bones were very bad so I put that option out of my mind. If you are not too bad it’s worth a try but you cannot go back once they are fractured.
Be aware if you take denosumab you may have to take it for the rest of your life, so decision should take your age into account. Risk of rebound fracture. It is also a med which affects your immune system. Teriparitide also needs a follow up med although I haven't heard it has the same risk of catastrophic rebound OP that can occur after stopping denosumab.
I guess I’m stuck on Denosumab now. I’ve already had the four fractures after being on it for five months. I just went along with what the consultant said I didn’t know there was any other choice being given that my bones are so bad.
Your t-score, I don't need to tell you, is serious. My concern is always for the people like me, or those not much over the arbitrary OP line who are prescribed drugs and most likely could, like me, do fine with "natural" methods. The drugs are serious medicine for people with a serious condition.
Thank you. I can only trust in the Consultant. It came as a shock when I found out I was so bad. Still it has improved a bit although it went backwards on Denosumab at first. The Consultant told me it doesn’t work for a year or two. I hate to think what I will be like after two years on it. I think I ought to wrap myself up in cotton wool now. Or even better get myself a Michelin suit. 😁🤣
Anecdotally I've read that at the end of a long meeting, I think the WHO, decided on this number as the best number, but it was really rather arbitrary. Your t-score doesn't tell you how strong or flexible your bones are. Only one, imperfect, tool hence development of the FRAX score which at least considers other risk factors. I have to say my FRAX score does give me a measureable risk, but most people who break a bone do NOT have OP, so how does one define "fragility fracture "? Take a questionable fracture out of the equation and my FRAX drops quite a bit.
Hi, You are very accurate and not being able to have a redo if you make the wrong decision on this. 🙁Hoping I have a little time to explore another option other than medication. A good friend of mine has gone the route that you have. She did a two year course of Forteo and is now doing yearly Reclast infusion’s.
Please look up my story, posted in the pmrgcauk community of this forum look up My Osteoporosis Journey. Sorry, I'm using an annoying little tablet and it's difficult to post links. If I figure out how I'll post here.
Thank you so much. I really do not want to take any of the meds, they all sound horrendous plus rebound fracture, osteonecrosis of the jaw, on medication for life etc. Also I am small boned and studies have shown the chinese women who are also small boned do not fracture! I feel I am too young (ha) at 61 to be starting on these drugs for life...
Your story sounds very similar to mine down to the L3 and L4 being affected. Also at 61 surprised my diagnosis. Before I go the medication route I want to check out other avenues as well as be sure there is not some underlying issue that is getting missed. Totally understand those that have gone the medication route, sometimes it seems that’s your only option. Just not sure it’s the best one for me. But only time will tell and as everybody mentions, it’s not like you can go back and have a redo on your decision. Ugh! 😂
I think there are even different standards for different countries where the dominant body type may not be as large as an average white American. Also the standard is based as far as I know on a healthy 35 year old. We will nearly all show at least "osteopenia" measured against that standard.
I totally agree. I think here in the UK the standard is based on a healthy 30 year old. Just read you blog and am ploughing through the links. Thank you so much for your blog
It’s a really difficult one! I was put forward for an alendronic acid infusion about a year ago but when I spoke with the nurse who was actually going to set up the infusion I was well surprised by her response to my reluctance. She basically said if I was not happy to go ahead then I shouldn’t as once it’s in my body, we can’t take it out. She went on to say, she has patients who say their daughter/son thinks they should have the infusion but she (the nurse) tells them it’s your body/your decision not your daughter/son. I loved this nurse for her honesty and needless to say didn’t go ahead with the infusion. Good luck with whatever you decide to do. Think I am going to abstain from taking any medication for as long as I can…
Hi Sandy, I’m recently diagnosed with osteoporosis and not keen on taking the prescribed medication as I understand it eventually causes your bones to become brittle, not to mention side effects too.
I’m not totally up on all of it but I do know there are some that once you start taking them you have to continue taking or switch to something else when you can no longer take the original one. For some of these at least it sounds like a lifetime of being on meds. I also hear about people who are still having fractures regularly who are on these meds. So between that and the other side effects that sound like they’re more apt to happen then they say, I am very reluctant to start a med. It is just very stressful trying to determine what decision to make.
I was on terraparatide injections for two years now I’m on Denosumab for life. I’ve had no problems with either of them other than five months into Denosumab I had four more fractures. I was told that it takes one to two years for the Denosumab to have any effect. I’ve had seven back fractures so had no alternative other than go down the line of medication. My Cousin has been on Denosumab for a few years now and she’s had no problems at all. I have got severe osteoporosis anyway.
All this information makes me a little hopeful that maybe Denosumab might be a good option. Thank you for the information!How long have you been on it now? Hopefully long enough that your fractures will now stop!
Where your fractures in your back, hip, someplace else?
I’ve been on it for ten months now. I’ve had seven fractures in my spine, one in my foot and one from a fall a few years ago in my hand. . I think I’ve got a couple left unbroken. 😁🤣😂
Bisphosphonates should not be taken more than two or three years as eventually new bone is being laid on an increasingly aging matrix, which can lead to the brittle bones problem. Newer drugs are the ones that come with other issues. Such as rebound osteoporosis for denosumab (Prolia) and apparently teriparitide (Forteo) also needs follow up treatment, can only be used for two years. There is another drug, brand name Evenity, brought to us by the makers of Prolia, which comes with a black box warning, I don't know if it has been used widely enough and for long enough for unacceptable side effects to crawl out of the woodwork as they have with the older drugs but any drug that might cause death would need to be absolutely the only option for treatment before being considered.
Thank you, there are so many drugs out there by so many different names it’s hard to keep track of them. You seem to have done a lot of research based on all the answers I have read from you. Thank you!
Hi, I was wondering what you chose to do for your osteoporosis diagnosis. You sound like you have done a lot of research so curious if you found something less risky? I am definitely struggling with what the best path is.
Thank you! Do you have osteoporosis or osteopenia? Any idea what caused your diagnosis? How long have you been using the nutrition and exercise route? Have your number stays stable? I was thinking of going the nutrition and exercise route, but not really sure what caused my diagnosis to begin with. I have always exercised and pretty good nutrition. I’m beginning to think my body is not absorbing the nutrients potentially. Just a guess. And then there’s the whole age and genetics thing. 🤷♀️
It sounds like from your story you are in the osteopenia range. Definitely a much better position to be than osteoporosis. We’re you ever in the osteoporosis range?
No. I was told I was, which is why I did so much reading and worked hard to improve matters. I'm not alone. People starting off at a worse place have seen similar improvement.
I said before I never had OP but I was told that I did. My FRAX was enough to make them recommend alendronic acid, which I refused. I improved my score to -1.6 in one year while I was still over 5 mg prednisone for half that year.
I should add it was several months before I was able to get my t-score. I thought all this info was in my story. Google healthunlocked my osteoporosis journey
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