Hi all, I have osteoporosis but no fractures. Consultant says my spine is not bad on my latest MRI. I'm 66. However, he wants me to take Risedronate 35mg starting from now. Worried as I am about potential future breaks, I really don't want to take it, mainly because of the possible side effects. I already have reflux, and dodgy gut. My vitamin D levels, they tell me, are normal at 65. (65 what? I don't now). Basically, I know that many of you take Vitamin K2, and I will take this too, but I don't want to take a supplement with bulk fillers. Can anyone suggest a really "clean" supplement?
Should I take Vit D3 as well, do you think? I really intend to sort this out with diet as well. I walk a lot and garden, so I'll carry on with this and add weights and resistance - as soon as I find/see a physio. Thanks.
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I think you need to find out exactly what your levels are along with their lab ranges. I test my D3 regularly (using home fingerprick tests) and the range the company who test mine uses is from 50-250 nmol/L so on that basis 65 isn’t great. So I would start by finding out your lab ranges and see where your 65 fits in.i take a D3 supplement that is in capsule form, sunflower oil, a glycerin capsule shell and D3 cholecalciferol.
I have found the ROS leaflets on sources of Vitamin D and Calcium to be really useful. I found that the calcium I was prescribed really upset my gut and along with the fracture liaison nurse we decided I was probably getting enough dietary calcium not to take a tablet but I take a capsule of algae based calcium every day just to be sure.
Good idea to look for a physio who is experienced in dealing with osteoporotic patients. I also do two hour long Pilates sessions every week. If you can find a teacher who is experiences with clients with osteoporosis you might find that helpful too. Our class is really about balance, posture and gentle stretching - we are not aiming for bodies like Mrs Universe!
My Pilates teacher is a physiotherapist with a lot of experience working with people like me - elderly with osteoporosis. If you go down that route make sure you are in a group of no more than six.
Hi, thanks for answering. You're right. I've googled around and it seems lab ranges vary, which isn't helpful. I want optimal, not normal. I do have a fair amount of calcium in my diet I think but it would need a nurse like yours to discuss this with me. They will likely put me up for physio which will take weeks for an appointment, probably just for one session so I'm willing to find one myself. I'll check out pilates but as you say, the teacher needs to be familiar with people like us.
Like you I have stomach problems, despite which I was urged to take Alendronic Acid which I refused. A zolendronate infusion was suggested too but gut problems are a little known side effect of that as well. I do take Better You Vit K spray and Future You Vit D and Magnesium which I tolerate well enough. I have sufficient calcium in my diet.
Do your research thoroughly and don’t feel railroaded into any treatment you are not completely happy with.
Thank you. I've always asked loads of questions and I've had a couple of consultants in the past who were fine with that. But at the end of the day, they just want you to take the meds! I see my consultant in 3 weeks, I will research and be prepared. In the meantime I will start on Vit K2, and check out the vit D and magnesium spray.
Even a consultant endocrinologist who I rated quite highly threatened me with the direst of consequences if I refused to take AA. It did shock me at the time but the support and information I have received from this group has been very encouraging indeed. I hope it can help you too.
Thank you for your answer. I'll have a look at that one - there are so many out there! I just want one that isn't filled with more other things than the actual vitamin! I like that it's UK based.
Although your Vitamin D is within range (UK "normal" lab range is usually given as 50-150nmol/litre), many rheumatologists recommend a minimum of 75nmol/litre, and some say 100 or higher (bearing in mind, that's still only the middle of the range). On average 1000iu of Vitamin D would be expected to raise your blood level by about 25nmol/litre, so that should bring it up to about 90nmol/litre. It's considered safe to take up to 4000iu daily, so unless you have any specific contraindications (very unlikely) you'd be fine to take 2000iu to bring your blood level over 100.
I'm wondering what your consultant means by your bones being "not bad"! When did you last have a DEXA scan and what were your scores? I've seen from your profile that you're on meds for RA, which probably raises your fracture risk, but the DEXA report should include a FRAX fracture risk score that should be used to guide whether or not to recommend meds. Everyone responds differently to meds, but over the course of a year, among other side effects Risedronate made my IBS much worse; when I stopped taking it my stomach improved dramatically. You also need to be aware that bisphoshonate medications (Alendronic Acid, Risedronate, Zoledronic Acid infusion) only reduce fracture risk by 50%, meaning that 50% of people who would have fractured without it, will still fracture despite taking it. Also, most people won't fracture, even without taking meds - for example, even if your fracture risk is 20%, that still means that 80 in 100 people won't fracture in the next 10 years. The problem is that it's impossible to identify who will or won't fracture, so in the end it's down to individual perception of risk. You might find this decision aid helpful: nice.org.uk/guidance/ta464/...
Hello. First of all thank you for answering, and I actually realise now I've asked this question before! I had an MRI as well as the DEXA, as I think he wanted to check if I had any disc issues causing pain in my back. In a nutshell, there are some multilevel minor degenerative changes, no spinal canal narrowing, no definite nerve root compression, no significant findings. I'm also not taking any medication for RA at all. I was taking RTX up until 2018, but changing areas meant I lost all that, so apart from normal painkillers, I take nothing. My folate is low , so the GP suggested folic acid. Of course, when they say low or high, they don't really discuss the ranges. According to the info I have on my DEXA, I have a 16% major risk fracture in ten years, and 5,5% hip risk fracture. Interestingly, three years ago I had a DEXA which shows in comparison not much change with no bone meds taken. Because I've had pain and IBS type symptoms I'm being referred to gastroenterology, so I'm even more reluctant to take the risedronate. Just for info, my spine is t score -2.7/ z score -1.1 Left femur neck -2.0 /z score -1.2 Left femur total -2.0/z score -1.2. Thanks for your help, I've found your posts helpful and interesting. I wish I could just have a 'grown up' conversation with medical staff, willing to concerns, and be happy to explore other options.
Your z-scores show that your bone density is within the normal range for age (the NHS says anything better than -2), while only one of your t-scores is on the cusp of the osteoporosis range. I guess your fracture risk is high because of meds you've taken in the past, but according to a chart I've seen on the National Osteoporosis Guideline Group (UK), endorsed by NICE, your risk is below the recommended treatment threshold: nogg.org.uk/full-guideline/.... I printed out the chart for myself (and for ammunition if my GP should ever push me to start meds again!), and drew lines on it to show the treatment level at my age, which came up with a 10 year fracture risk of 22%. I'm 67, so it won't be much different for you. If you can understand the chart, you might like to show it to your rheumatologist!
Best thing is vibration therapy. YouTube has some videos of talks by the doctor who did the NASA study on treating the astronauts who were getting osteoporosis. Like the Marodyne LIV developed by him because the vibration rate is controlled. I am 79 and bone density improving.
Hi there, you really don't want to be taking Any Osteoporosis drugs especially as you haven't fractured. You would have Great peace of Mind if you had a Rems Scan which actually measures 'bone strength'. Dexa Scans are useless. Osteoscan is the best place to get a rems Scan with Nick Birch. Have you asked your Dr/Consultant to find out the root cause of your Osteoporosis? Possibly Hyperparathyroidism = you need a PTH, Calcium, Vitamin D, Albumin test at 8 - 8:3030am to get accurate results. Also, ask Dr for a Full Hormone panel as so many People I know will not take any bone drugs, instead they take bioidentical HRT = estrogen patch or gel, and Progesterone to protect the uterus, often in a combi patch. Amazingly they reversed their Osteoporosis back to Osteopenia. They do take :- Magnesium Malate, Magnesium Glycinate, Vitamin D3, Vitamin K2/MK7 and K2/MK4, some take Boron also. Worth a try
Thanks for sharing. We are posting again about REMs to make sure people aren't reading misleading information.
We’ve noticed that some people have been saying that REMs is more reliable than DXA scanning and is the best test to understand your bone strength. Our specialist nurses stress that the current up to date expert-view, based on the research evidence is that REMs is an interesting scanning method which is currently being researched. But it is not yet accepted by experts in the field of bone measurement as a reliable and fully tested approach to understand how strong your bones are.
We have a video and web page here which gives more detailed information about this topic. Please see the ultrasound information on the ROS website. theros.org.uk/information-a... You can hear more from an expert (start watching the video at 30.15). The scans and tests section of our website tells you the best ways to investigate and understand bone strength.
This can be a tricky area to understand because no scan or test can perfectly explain bone strength and we all want a definite answer especially if we are making decisions about medications. But just a reminder, please don’t post anything as ‘fact’ when it’s a personal view and not yet proven as it can be confusing.
It isn't accepted yet by the NHS, but it IS accepted as a means of diagnosing osteoporosis in both the US and Italy. It's also the only way of getting any idea of individual bone strength in the UK, apart from the tiny number of DEXA scanners that have additional trabecular bone score software. It's been the subject of a very large-scale European research study, which shows it in a very favourable light. Even the British Medical Journal has mentioned it as being more reliable in some circumstances, for example where there's arthritis.
Hi, thanks for answering. The root cause of my osteoporosis is likely years of steroid for RA. I've had all those bloods done - though not at that time of day! However, I will be taking the vits you mention. I'll be seeing my consultant again in a week or so, so I'll be discussing the blood results, as well as all the blood tests. Thanks for your information.
Hi - a vitamin D level of 65 doesn't sound too good - I presume that's 65 nmol/L, it's best to get it over 100 and preferably above 125 for vitamin D3 to help with many health issues. I take 20,000 ius D3 per week, GP prescribes it, I've been taking that level for the past 15 years. I get my vitamin D levels tested every six months.
You asked about vitamin K2 - I take Life Extensions Super K which gives 100 mcg vitamin K2 as MK7 per capsule, I take one, sometimes two capsules, per day.
I'm prescribed Strontium Ranelate for my osteoporosis - right now there's an issue with the pharmaceutical company unable to get one of the ingredients so until they source it I'm taking strontium citrate supplements which I buy from the US.
I also do weight lifting and lots of walking. When I was diagnosed with osteoporosis 17 years ago I had some compression fractures in my spine but they have not got worse and I have had no new fractures.
Hello. Thank you for taking the time to answer. Sounds like you have a good handle on this, like others on the forum. I've looked at the various sites now. You are the second person to mention Strontium. I also walk a lot and would be happy to do weights. Clearly, what you have been doing has worked well for you. Best wishes.
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