Concerned about new research from Imperial College demonstrating micro fractures after biphosphanate
Posted , 5 users are following.
I am due to have yearly infusion of zoledronic acid when this new research was published. It was only a small study but evidence was overwhelming. It shows although bone gets denser with treatment but becomes brittle prone to fracture. Due to have treatment Wednesday but now don't know what to do.
1 like, 24 replies
Anhaga jennifer54532
Posted
How many years have you had the infusion? I think you could seriously consider a so-called "drug holiday" if you have already had a couple of infusions. My understanding is that beneficial effects of the bone meds linger for a while after discontinuing (as, unfortunately, so do bad effects) and that gives you time to try other means to improve bone density. I was diagnosed with low bone mass, t-score -2, and advised to take AA but as I was terrified of the drugs I opted for diet, supplements and appropriate exercise and after one year my followup scan showed t-score of -1.6 although for much of that year I was still on a prednisone dose for PMR at a level where effects on bone density can still be quite serious.
Of course this depends very much on your personal situation.
The reason the bone becomes brittle is because the medication has prevented the normal bone remodelling, where old bone is taken away. This does, in the short term, increase bone density, but because new bone is being laid onto an aging matrix eventually the structure becomes brittle. It's really important to allow the body to remove the old bone cells, but also to encourage the increased production of new cells - this is done by gently challenging the bones with appropriate weightbearing exercise, and providing the cells with the nourishment they need to create the new bone.
Why not ask to defer the proposed treatment while you take some time to do further research. I suggest you start by looking up such things as Vitamin K2 (not K1 which we get from our leafy greens, but K2 which usually needs to be supplemented in the average modern diet), and exercise to encourage bone strength, like walking, Nordic walking, tai chi, some kinds of yoga and pilates, that kind of thing.
jennifer54532 Anhaga
Posted
This would be my second infusion but I was approx 10 years on oral biphosphonates and have also been on strontium renlate. Have been on long term predisolone hence osteoporosis been steroid free last 2years . I think I Will ask my t scores and if not too bad try other natural treatments .I know if I ask medical personnel they will advise me to have infusion but once you have had it that's it in your system for years , and I think they will find out it is doing more harm than good .
Anhaga jennifer54532
Posted
You've been on bisphosphonate treatment for ten years and you haven't been told your t-scores? Yikes!
I was pressured to submit to AA but frankly I was having enough trouble dealing with prednisone, and what I read about all the osteoporosis drugs terrified me and I decided I'd take my chances with thinning bones. So glad I did. When my new scan showed the improvement my doctor was impressed and asked me how I did it.
jennifer54532 Anhaga
Posted
Rung and got my T scores 2015 Nov they were 2.6 spine 2.3 femur does any one know how bad that is ? Rung and delayed infusion can't get any help from hospital as a long waiting time for nurse specialist.So no help there .
Anhaga jennifer54532
Posted
The World Health Organization has said that -2.5 is the beginning of osteoporosis. So your spine is just into the osteoporosis level and femur just under, at what they call osteopenia, or low bone mass, level. I'd be tempted in your position to opt for the natural way. As I've said I turned my measurements around by .4 in one year, and if you can do a similar thing then both your measurements would be well out of the osteoporosis range in a year.
Thing is, t-score is only one risk factor. It does not tell us what the actual strength of the bone is. If you have strong, flexible bones then you are at less risk of fracture than someone with an identical score whose bones are more brittle. There is at present no reasonable way to determine bone strength.
The major risk for fracture, whether one has OP or not, is falling. So step one is to develop strategies to avoid falling. Improving sense of balance (tai chi, yoga), removing tripping hazards in the home, that kind of thing. Step two is to challenge the bones so they become stronger (walking, Nordic walking, tai chi, pilates, weighted walking vest, that sort of thing whatever is suitable for you). Exercises to strengthen the core, and muscles supporting the spine are also a good idea. Step three is optimizing nutrition (supplements and varied diet).
Given your spine measurement you could consider going to a physiotherapist for advice on strategies to guard the spine. There are ways to avoid too much forward bending, for example. Our local hospital offers a clinic for people at risk, but I had to wait seven months to get into a session, so if you run into same kind of delay I'd recommend possibly just a single session with a physiotherapist, make sure they have experience with osteoporosis patients.
There has been research showing that a combination of micronutrients is just as effective at improving bone density as the medications, and you do not have the risk of any side effects. There is the additional advantage that nutrition and exercise gives you new, healthy strong bone, encourages the healthy bone remodelling we need, whereas the bone meds rely on poisoning one part of the bone remodelling process (the normal removal of old bone) which in the long term will result in a more brittle bone structure. Not to mention the possibility of serious side effects in the meantime. Even strontium supplements or strontium ranelate are relying on strontium replacing calcium in the bones. It's heavier thatn calcium and therefore the density increases. But is the bone bone stronger? Perhaps not.
Anhaga
Posted
I'm on my way out so no time now but if you are interested I can private message you my little essay on my own journey, plus short bibliography. It's getting a bit dated now (over a year) but probably still useful.
jennifer54532 Anhaga
Posted
jennifer54532 Anhaga
Posted
jennifer54532 Anhaga
Posted
Anhaga jennifer54532
Posted
I think there are different kinds of pilates, as there are different kinds of yoga and tai chi. I've never done pilates myself but I do know a number of people on the forums seem to really like it. Yes, twisting the back is supposed to be avoided, as is bending forward. Instead of bending, pretend you are going to sit down, keeping the spine straight, and bending the knees. Somehow that shifts the centre of gravity and you can get quite low without stressing either back or knees - at least I can, long enough to feed my cats and change their water!
Fyrizonly Anhaga
Posted
Are you familiar with Algae Cal supplements. They always advertise their strontium and I have been too nervous to try it but not crazy about trying Prolia either 😜
Anhaga Fyrizonly
Posted
Sorry. The most "alternative" I've gone with my supplements are extra K2 on top of a strong bones formulation with a bunch of microneutrients in it along with the usual suspects. My friend who first alerted me to non-drug ways of dealing with bone thinning, however, uses oat straw or something like that because it contains silica.
kathleen65757 Anhaga
Posted
Anhaga kathleen65757
Posted
Apparently I've lost two inches in height, which is a puzzle as my bones are okay. I guess we all get shorter as we age because gravity compresses everything - we are imperfectly evolved to walk upright! So once upon a time I was nearly 5'6" and now I'm just barely 5'4".
kathleen65757 Anhaga
Posted