I've contacted NOS who are kind but it seems to me preprogrammed to push bisphosphonates or any of the big pharma drugs the NHS is presently heavily pushing.
I've got 3 fragility spine fractures but only have scores of hip -1.9 and spine -2.
I have autoimmune and am on blood thinners so worry about long term vitamin K2.
I've decided to start hrt to turn on my natural bone remodelling again after all hrt was the go to method for osteo until the big scare 10 years ago.
I'm pushing in calcium foods and vitamin D but I had previously become deficient prior to fractures ( maybe that's why I fractured).
I believe I may have ehlers-danlos (trip to rhuemy soon) so am very bendy but stiff ironically and have poor muscles.
I need help presently I can't exercise and walking is very slow and laboured.
I refused drugs but fear I have no way of knowing if my bones improve as clearly a dexa only tells half a story.
Can anybody help me ?
Written by
Jade
To view profiles and participate in discussions please or .
No matter what your decision regarding medication I hope you are getting some advice from an experienced physiotherapist who can help you with strategies to protect your spine, and also, when you are ready, provide exercises which strengthen the supporting muscles. One way to look at medication would be to consider it not a as a lifetime, chronic, commitment but as a short term temporary measure (perhaps for two years provided you have no side effects) to provide critical help. I do think it's odd that you've had the fractures despite a reasonably good t-score, but as we know the t-score only measures density, not strength or flexibility. There are some new generation blood thinners which are not affected by Vitamin K - check which you are on now. I understand K2 affects blood clotting somewhat less than K1 but of course you must follow medical advice on that score.
My blood thinner is a fragmin injection daily which I do believe should not be affected but of course my gp has no idea or opinion on the matter.
I cannot bear the thought of bone meds, too scared of jaw necrosis and my dentist agrees they are dreadful. Unfortunately if you get necrosis it would be too late as it's incurable.
I have relatives who've done AA and it has not worked plus we know they only make your dexa 'look' better.
I am keen to know what you did actually.
I'm paying a physio right now for ultrasound, NHS won't do it now NICE say it doesn't work.
A pharmacist should know, or at least be able to look it up. I only know this because someone was asking about it recently on this or the Patient forum and it was mentioned there is a new generation of blood thinners which work differently from the warfarin type and are not affected by Vitamin K. Sorry I don't know any more.
I have been taking supplements, the usual suspects plus Vitamin K2, and eating as healthily as I can, plus I walk a lot, including Nordic walking sometimes, and I have been learning tai chi. Have a load of physio exercises for nearly every body part accumulated over the years. I have to take prednisone (for polymyalgia) and my doctor wanted to put me on AA without even a DXA scan. Of course I refused. The scan done after I'd been on prednisone for about four months gave a t-score of -2. A year later I had improved to -1.6 and my doctor was amazed! My prednisone dose is now so low that I hope it has a negligible effect on my bones.
Hi, I feel the same as you. I am 46 and am not menopausal although due to being so low weight (5 and a ahalf stone), due to severe gastroparesis, I have had not periods for a few years. I have had osteoporosis for a number of years which has been getting worse. I have had rib fractures nearly every year, through simply coghing or knocking them, and had a year of a few other breaks. Comsultants want to push bisphosphonates, as they are a quick and cheap solution. Howver, I've read so many conflicting reports saying that teh drugs actually make bone weaker in the long run, plus actually cause small fractures which take longer than 'natural' fractures to heal. To add to those are the numersous risks such as blood clots, stroke, cancers, and all the other unsavoury side effects. So, I turned down the drugs like you, and was told there was nothing more they could do.
I take knit bone (Symphytum Off 30c) once per week which is homeopathic medicine but has been used for centuries, and like you I also take vitamin D supplements and up my clacium as much as possible, which is hard as I can oinly take liquids in small amounts and vent off a lots of what I consume through a tube due to pain. I am in line for a feeding tube in addition to my PEG vcenting tube, but I ahve PTSD after my first few tube operations and am against another second tube so I'm in limbo at the moment.
I also have EDS so am in pain 24/7 with my joints.
If you can up your calcium, magnesium and vitamin D, have bone and have food which boosts muscle priduction which can help with muscle strength to support the bones, I would take homeopathic meds too. I used to have Vitamin D injection which lasted 6 months but they are hard to obtain. Its frustraing that there is so little on hand to help those of us who don't wish to simply accept the bisphosphonates, and because they pose so many risks whcih you have to weigh against the rosks of fractures. I walk everywhere loking at the floor, and have nightmares about falling... sounds silly, but I do.
It doesn't sound silly saying you look at the floor, I do too, I'm like an old woman walking carefully everywhere. Luckily I not prone to falling but right now my life is so narrow.
I just wish I had a way to see if the calcium vitamin D and hrt are actually working without waiting 3 years.
I take Rivoraxoban, which is apparently a new generation blood thinner which has fewer side effects and can be taken with K2.
Ive recently been diagnosed with osteoporosis and ostopenia after taking AA for 2 years (I'm on long term steroids for GCA) and they've now given me risondronate which I wont take because of the recent adverse studies.
I hope it works for you, Ronnie. I tried both and they upset my stomach and bowel. I was only on both of them for about two weeks.
That is exactly what my GP told me that risondronate may well be easier on the stomach. In that case why don't they offer it first of all? Is AA cheaper?
haha! it could get very interesting - do I continue to get the prescription just in case she checks up?! I think I need to challenge her to justify its use in the face of the recent studies. Plus to explain to me why a similar drug has not worked over the last 2 years if my dexascan is anything to go by...
I have that actually as well and my gastro told me after scope, I can either have reflux or a broken hip. In the meantime, my gp needs to speak to me so will discuss all this with him next week
Suzuki, there are alternative drugs on offer. Injections......... I hope your GP appointment goes how you would like it to go, next week. Do let us know.
SUzuki..that's my dilemma too..I have almost given up Omaprazole 40gm..been on it for years and years, two endoscopies showed inflammation and small hiatus hernia, the last one two years ago showed clear and no hiatus hernia..didn't know the later could be cured tho.. Now I do get reflux and feel full quickly and swallowing things like Senna difficult.. but after Dexa scan recently I was told about Omaprazole affecting my bones..at the moment I have been prescribed Vit d3 and the Bish....one once a week....but so far I have decided not to the Bish...one a bit scared of that..I broke my ankle seven years ago and Every morning I do the leg and balancing excercises , mainly standing for a minute or two on each leg etc,, it certainly is strengthening my balance a lot..I also walk as fast as I can when I am out ..but I still have this dilemma..so I think I am going to book an appointment with the Pharmcy to discuss a replacement for Omaprazole that does not effect the bones so much.
Sorry to waffle..good luck..ps I,am 81 and My Mum lived till 96 but had a dowagers hump for the last few years of her life
Your T scores are out of the osteoporosis range so I think your choice of going on the HRT option a good one to try and safeguard your bones, especially so if your rheumy doc advises its ok for you.
You are wise also to avoid the K2 if you are already on blood thinners, but do keep your vitamin D levels up and get those checked periodically. If you know your recent vit D levels then you can guage how much vitamin D to supplement. For me if I am just over the accepted norm in UK I would still supplement 1-2000 IU during summer and in winter between 3 and 5000 IU (because I have been deficient previously I get my levels checked now at least once a year around March after coming through the winter period, its also good to know what the levels are just before Winter say November time to see how you are doing.
Low vitamin D levels means the bones can't make new bone so well, so if you are deficient currently you need that checking periodically, say every 3 months whilst on the Vit D3 supplement. If it gets above range within 3 months just continue on that dose if it doesn't perhaps increase the dose, the doctor should advise you on this, but Calcichew Forte (with vit D3) that is just not enough vitam D3 supplement if you are already deficient.
You need a good balanced diet to be sure you are eating adequate amounts of vitamins and minerals to help the body's health including bone health, that includes lots of fresh fruit and green leafy vegetables along with other vegetables and protein.
With poor stiff muscles you need to do some form of exercise to get things moving again as suggested ask for a referral to a physiotherapist who can advise of exercises to help movement. If feel you can do now, point and flex toes, ankle rotations, if you can stand just do short walks inside, try a few sit to stands from the chair, same for hand exercises, fist and flex, wrist rotations, wall press ups, just do what you can (what you feel is safe for you) and get professional medical advice for the most beneficial exercises for you at this time with the spinal fractures. Perhaps check out exercises for ehlers danlos syndrome.
Exercise and good diet is what can go a long way to helping the body achieve good bone health.
I don't believe UK pushes Big Pharma myself, I think that expression comes out of the US where patients generally have to pay for their own medicines. In UK its more like NHS prefer to prescribe the cheapest med available first to each NHS patients. Private patients in UK of course pay for their meds.
Some people have done extremely well on bisphosphonates and have experienced no side affects and have been free from fractures but we are not all the same and as with any individual there are so many factors that can determine whether or not someone will fracture.
Non of us know how well our bones are doing whether on the prescribed medication or not and our only half way of knowing anything is the DEXA scan which only tells us about bone density in the areas Scanned.
Best wishes to you and for your coming visit with the rheumy.
After trial different types and makes, I’ve finally settled for Full Entourage Aqua CBD, which is legal in the UK and can be mixed in a drink. I get it from Simply CBD, who are very friendly.
I’ve been taking CBD for 3 years for fibromyalgia and interestingly, my DEXA scan showed that my hip & the rest of my spine (apart from the fracture) were very health and strong. This is despite going through the menopause almost 30 years ago. I did take HRT for the first 11 years, but not since.
Might be worth looking at, I’m now using it for pain control for my fibromyalgia and have come off my prescription meds.
Good for you choosing HRT over those awful bone meds. They're a menace, I believe. I am 70 years old and was able to talk my doctor into prescribing them for me. I will never look back!
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
that risondronate may well be easier on the stomach. In that case why don't they offer it first of all? Is AA cheaper? 
Vertebral fractures and starting zoledronic acid
Raloxafine 
34, Osteoporosis and scared of drugs 
How long after ceasing Prolia are we at risk of fragility fractures before osteoclast and osteonlast activity returns to normal if st all?
