Hi everyone, I’m new to this online group. I have been diagnosed with Osteoporosis with the following scores: Lumber Spine -4.3 and Total Hip -3.2
I was recommended to take Bisphosphonates in tablet form but when I declined this due to having had past IBS, I was offered a yearly infusion. At the current time I have delayed taking up this offer as I want to find out if others manage their Osteoporosis without medication. I’m 66, walk daily (have a dog), and as I live on the edge of downland many walks are up and down significant hills. I feel there is no issues with my leg muscles. However, over the years I have experienced muscle pain in upper body, including intercostal muscles. The results of recent blood test show my calcium level is okay but low vitamin D, so now taking a high does of this. I gather low vitamin D can affect muscles. So, I have started swimming to strengthen muscles and have bands and dumbbells to try too.
I would appreciate any advice/suggestions. I also tried to find out how my scores compare to others with Osteoporosis, but all I seem to find is the level Osteoporosis is diagnosed.
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TwentiesGirl
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I have the yearly infusions with no problem. My T score was -2.9 for my spine a number of years ago when I had 3 annual infusions then took a three year break from it. During that time my T scores improved to -2.5 while I had the infusions but declined when I was off it.
I had another infusion in January this year again with no problems due to the fact I am now on daily steroids because of a different medical problem. The steroids increase your risk of osteoporosis which I already have.
People often take K3 to help the absorption of Vitamin D.
The ROS helpline maybe a way forward to discuss your T scores and the different types of medication.
Think it maybe difficult to improve those scores just with diet and exercise.
I can recommend using British Supplements for any supplements you may need as they don’t use fillers or bulkers so are clean supplements. They are only available from their website not Amazon as there is is someone trying to copy them on Amazon.
I was going to say the same as Cappuccinobaby. So often GPs don't check for this fairly common underlying cause of osteoporosis. You should have had tests for vitamin D, calcium and parathyroid in the same blood draw (not just vitamin D and calcium), together with thyroid, coeliac and full blood count. Your scores are quite poor, although on their own they don't tell you much about your bone strength. You should also have a FRAX fracture risk score (eg 10% risk of fracture in the next 10 years), with any recommendation for medication based on this. Walking is good exercise and will help slow deterioration (we all lose bone density as we age), but high impact exercise (hopping, jumping, skipping, running, dancing) is more effective, along with resistance exercises (using weights and/or resistance bands). Swimming is good for general health, but there's no impact involved, so is not thought to help maintain bone density.
I'm 68 and have maintained my bone density for the past 5 years without taking medication, although my t-scores aren't far into the osteoporosis range (neck of femur -2.8, total hip - 2.6, spine - 2.0). However, I don't know how much of this is due to exercising and how much as a result of taking a low dose strontium citrate supplement, along with a diet high in calcium, magnesium and protein and supplementing to keep my blood D level above 100nmol/litre, together with K2-MK7, boron, zinc and bovine collagen supplements.
thank you, all helpful information to know. I am due a yearly blood test in January as my white blood cells monitored. I also have had raised ESR for over 18 months now. I will ask about checking all your suggestions. I feel absolutely fine, so reluctant to take anything. I was told my risk of fracture over the next 10 years is just under 9% for hip and 19% for spine. Trying to be positive Iam focused on 91% chance of not fracturing my hip and 81% chance I wont fracture my spine. I do lots of balance exercises and take a stick when walking on the downland due to potential of slippery ground when wet.
Hi - I’m also 66 with scores of lumbar -4 and hips -0.5 2 years ago) I’ve also deferred any drugs for the moment. I’m trying to manage by diet and exercise. I’ve taken up Parkrun and run 5k twice a week. In summer I also swim 3xweek. I bought a Marodyne LV vibration machine, which I use for 10 mins daily. I also do Pilates once a week.
thank you. its nice to hear from someone else who is trying to manage with diet and exercise rather than meds. I have to admit to being anxious about side effects of any medication. I only take a paracetamol as a last resort, and this is rare. I try to reduce sugars but admit to liking chocolate. I eat a varied diet, lots of cheese and full fat yoghurt. Make my own bread and I do eat meat and fish about 3-5 times a week. I have had soya milk for the last twenty plus years. I have thought about exploring something like Pilates, but for the next few months I’m going to focus on swimming aiming for 20 lengths x weekly. Currently managing 10 lengths. I realise it’s not an exercise to improve osteoporosis but I do feel it will benefit my upper body muscles. Out of curiosity do you know if the dexa scans pick up compression fractures? I haven’t been told I have any to date, but useful to know for certain. I will explore a Marodyne Machine.
I've used a vibrating plate for years, if you've got fractures I don't think you would tolerate it, I put it on the lowest and wish it hasn't tried. So although I was using it for years before knowing I had OP, it obviously didn't strengthen my bones, it definitely helps tighten muscles but not convinced about the advantage for bones.
Hi and welcome to the forum where you will find much support from other members.
I think in answer to your question you will find conflicting advice, some of this will be because we are all individuals and have different experiences of treatments.
It is important to remember also that many people who manage their Osteoporosis have good T scores and are without fractures.
Your T Scores are not good and diet and exercise alone will not increase your bone density to a level that will take you away from risk of fracture.
With T scores like your own you do need to be extremely careful what exercise you choose to do, the ROS fact sheets will really help to guide you.
Do not Bend Or Stretch ( as in reach up for things) avoid lifting anything the slightest bit heavy and do not twist.
I have lived with this Disease for many years.
I now have 15 spinal fractures and two rib fractures. ( I never had a fall or trauma of any kind)
A number of these fractures are now fracturing further.
These fractures have left me with Kyphosis, Scoliosis, breathing difficulties, gastrointestinal issues and the list goes on and on.
My own experience of the treatments has not been good but I must STRESS I do not tolerate medications well and have allergic reactions to many.
This has not stopped me continuing to try what has been offered to me.
Please do not let others negative experiences delay you trying the treatments.
Osteoporosis is an underestimated serious disease, if I could’ve tolerated the treatments I would have gladly continued with them for the rest of my life.
I find the best way of thinking, is that if I had heart problems would I refuse the medications because of possible side effects.
In answer to your question about fractures showing on a Dexa the answer is yes they do show and then they are usually confirmed with an x ray. ( I say this on my own experience over the years)
My journey with Osteoporosis gives a true insight into how serious a disease Osteoporosis is and how it progresses if left untreated.
The ROS nurses are brilliant they have been there for me with the best of advice, and are great at listening.
I highly recommend giving them a call they have the expertise to give good advice. x
thank you. I dont think I do have any fractures since none have shown up on Dexa, as far as I’m aware. I do have some intermittent back ache, but put this down to using a mini trampoline around 12 months ago, when I wasn’t aware of any Osteoporosis! I still think the ache is down to muscles rather than bone, but realise I cant be certain. I am due to discuss treatment agin in April. It’s a bit of a minefield trying to work out what is best for me, but I really appreciate everyone’s suggestions, thank you.
I've recently started following the Facebook group Brick House Bones (Dr Lisa Moore) who also has an excellent YouTube channel. She provides some very good advice on exercising for osteoporosis.
HiI've had Osteoporosis for about 10 yrs and always said no to Bisphosphonates but I'm on steroids and unfortunately I stretched whilst gardening and apparently I have a squash fracture in my spine. My rheumatologist said this could carry on happening.
As others have said your scores are poor.
I'm 74 and eat a good diet and exercise but it's obviously not enough in my case.
Tomorrow I start the new drug Evenity, injections into your stomach or thigh once a month for 12 months, after that I will have to carry on with something else.
It can improve your bone density by 70%.
It's definitely a very difficult decision but good luck.
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