Biphosphonates

[HogwartsDK]

Hello All!

I have just recently joined this forum I have been on the Ovacom forum for a while now and find it fantastic!

I have just recently been diagnosed with borderline osteoporosis my T Score was 2.3 my doc reckons it's down to Steroids as I had a large amount during Chemo and I have had recurring issues with sinuses for a while now too!

He is suggesting Calcichew and Fosfamax! I am wondering if anyone has experience with avoiding the Fosfamax and just making a conscious effort with Diet and Exercise instead??? I am very reluctant to take the Fosfamax??

Thanks a mill

D

[Aristotle13]

The calcichew which I believe is Calcium and Vitamin D3 is an excellent idea but whichever route you decide to take, you also need other nutrients, minerals, vitamins and appropriate exercise. I took Alendronic Acid (Fosamax) for five months before finding out that it can cause brittle bone problems as well as many other side effects. I have since 1st April been on a regime of around 20 pills & capsules daily and with the three 90 minute exercise sessions, I expect my next scan to show an improvement and shall be extremely cheesed off if it doesn't.

The fosamax interferes with the natural bone replacement cycle and stops old bone being recycled. This old bone eventually crystallizes and becomes weak and subject to crack propagation (brittle bone disease.

The suggested vitamin intake and all the other things that go with it is a quite lengthy list and if you really want it, I suggest that you message me an email address where I can send you an XL file with all my supplement information. I have no proof that this works but I actually feel healthier than I have for years and one of the vitamins - K2-7 is actually getting rid of some wrinkles and varicose veins as well as stengthening my nails and making sure that the calcium gets where it is needed.

A

[hslawton in reply to Aristotle13]

Hello Aristotle13

I, too, am new on here and was very interested to read this post. I have been taking Alendronic acid for 16 weeks now and am seriously considering stopping due to some unpleasant side effects (such as being doubled up with stomach pains on the day I take it and the day after). I am very keen to try more natural methods to increase my bone density, like yourself.

I wonder if it would be possible for you let me have the list of vitamins, exercises, etc. I really want to do all I can to improve my bone health, but not by making myself ill in the process. I would be very, very grateful for any advice.

H

I

[HeronNS]

You may be interested to know that contrary to industry claims the bisphosphonates do not have much effect on the total number of fractures people experience, whether they were diagnosed with osteoporosis or not. Your t-score is still not in the osteoporosis range. The t-scores were rather arbitrarily set some years ago by the WHO as a guide for possible treatments, but are now given rather too much weight as well as leading to the creation of a new disease, osteopenia, or low bone mass. As we all lose bone mass as we age it can hardly be called a disease warranting treatment. The major cause of fracture is falling so the number one strategy should be nutrition, as Aristotle points out, and exercises which both increase muscular strength and help maintain and improve good balance. Things like walking, Nordic walking and tai chi.

I've been taking prednisone since June 2015. I refused bone meds, have femur t-score of -2. Due for follow-up scan in a few weeks so should have some idea if the diet, supplements and exercise have been effective. After reading the possible side effects of all the bone meds I decided I'd rather be in little pieces than risk those side effects. Apparently patient compliance is very low, many if not most people who start taking bisphosphonates stop taking them within a year because of various side effects. They work by stopping proper bone remodelling. The osteoclasts no longer remove old bone and so new bone is built on top of an older matrix. This does appear to increase bone density, but bone density is not the same as bone strength, and there is as yet no convenient way to measure strength. People who take drugs like Fosamax eventually run the risk of apparently relatively rare (but any is too many) side effects like painful and disfiguring deterioration of the jawbone, or spontaneous atypical fractures of the femur. Other drugs are no better. There is one called denosumab which not only slows down osteoclast activity but actually poisons them so they die. As they are important for our immune system as well as in bone remodelling this seems like rather a bad idea. Strontium has been touted as a possible safer treatment but as far as I can figure out, what strontium does is replace calcium in the bones. As it is heavier than calcium it gives a greater density in the readings, but again is not necessarily stronger. You can't take calcium and strontium at the same time of day as the body prefers calcium, using it in many other body processes besides bone-building. One other major treatment still used by some is hormone replacement therapy, but all the caveats surrounding that regarding cancer risk, etc, when used for other ailments still apply, so probably should not be used as a treatment for bones, but reserved only for those who really need the hormones to be supplemented for other, hormone related, reasons.

All this by way of saying what we need to do is make sure the calcium we take is in a form we can efficiently absorb and that it goes to the bones where it belongs rather than getting deposited on the walls of our blood vessels, or in organs where it does harm. This is where Vitamin K2 and magnesium are important. K2 is hard to get in the modern diet so you'll almost certainly need to supplement it. Weight-bearing exercise encourages the osteoblasts to lay down more bone.

hindawi.com/journals/jeph/2...

[cdenoncourt in reply to HeronNS]

Very thorough answer HeronNS. I hope you will be sharing the results of your next bone density scan with us.

[Jennymary]

Hi, not able to advise re: meds, but is there a cancer based exercise rehab scheme where you are, if there is may be worth trying to take part in that, the instructor may also be able to advise on nutrition, if there isn't a cancer exercise scheme, here in Bristol, as well as cancer we have a GP referral for exercise scheme, so one of those may help you, I wish you well x

[Ch1ppy]

I took Fosamax for 13 years, which is longer than is recommended. At first my hips and spine improved but then began to deteriorate again, though fortunately no fractures or pain. I came off the medication last year and rather than go on a course of Denusamab injections, which is what the NHS recommended, I saw a consultant privately. For the last year I've been following a muscle-building exercise programme, which an exercise coach worked out for me. It takes me around 90 minutes a day 3-4 times a week. No special equipment, just exercise bands and a gym ball and so nice and easy to do at home, but it does take a bit of time. I also try to skip for 15 minutes a day and do long walks at the weekend. I've also seen a nutritionist who upped my protein and calcium intake and calories (my BMI was a bit too low). No medication, but I take vitamin D3 supplements and a bone protective supplement (Osteoguard). I've recently had another DEXA scan and I'm happy to say that it little bit better than the improvement expected with medication. My GP said she was surprised, but pleasantly so! So, on the basis of my personal experience, I'd say exercise and diet are definitely worth trying but you need to get a follow-up scan booked to make sure it's working for you.

[jemimacopping]

Everyone seems to have a different story. I have osteoporosis of the spine with 3 fractured vertebrae. I had been on Alendronic acid for 7 years, plus Adcal with Vit D 3 and my second scan 2 years after staring treatment showed a marked improvement. From then on I began to feel that things were improving because the pain I had experienced at the beginning was getting better and by the beginning of this year I had almost no pain at all. Then a few months ago I experienced a difficulty on swallowing-oops! I thought, so went straight to my GP who told me to stop immediately. I then had an endoscopy a couple of weeks later and they found a slight narrowing of the oesophagus, but the biopsy was ok. I got the bone scan again a month ago and the result was very positive, I started a gentle yoga class 3 years ago, specifically designed for people with bone and joint problems. and since that stopped I have been practicing at home, I go for top-up lessons when my teacher is around. I concentrate on the breath which helps my digestion and can now do some more strenuous exercises without pain. I will start getting the denosumab injections when my Vitamin D has been checked.. I also go for walks whenever possible and work in my garden., all things I couldn't do before my diagnosis.

It would be nice to be able to visit a private consultant and have a personal trainer like the above commentator, but cannot afford to do so. So far I am pleased with how my condition is getting better. I am now 72 and my mother and grandmother both had undiagnosed osteoporosis and both were very hunched over at this age. Even though I have lost nearly 2" in height (I was 5'8" before) so far I haven't developed a hump, although my tummy sticks out more because of the fractures. I am working on it though with the yoga and it seems to be improving. So what I thought was going tobe a chronic disability has not turned out like that. I discovered that a positive attitude and determination that this wasn't going to spoil my life has helped me enormously.