Hi - just hoping to find someone else who has a t score as bad as mine (-5.9 spine). I’ve had 3 vetebral fractures (now healed) and am taking Evenity but want to know what this score means for me long term. Would love to hear from anyone in the same situation.
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Hi I have a high t score too…6x vetebral fractures…not healed and so painful …hoping to start the same treatment as you I am 58yrs old fit and healthy I thought
this is all new to me …lower score as and when the treatment stars to work / heal?
the pain is so horrible to.. what did you do to help… the meds are affecting me and I am just on partecamol and did you have any phsyio …plus any side affects from this treatment too
Hi Jess - yes I too was fit, exercised regularly, Arte a healthy diet and had a normal BMI. Last April I went on a yoga retreat and on the last day my back started hurting. It got worse over the following week as we toured Italy by train. I thought I’d just pulled something so didn’t go to the doctor. A couple of months later it was still hurting so I went to the doctor - she couldn’t find any wrong. A few weeks later I went for a sports massage to see if it would help. She said she thought I should ask my doctor for a DEXA scan and that’s when they discovered I have severe osteoporosis and 3 vetebral compression fractures. The fractures were very painful at first - better if I sat up straight - I occasionally took paracetamol. Even now I still get pain if I breathe deeply - stomach breathing is better. It’s sometimes hard to get comfy in bed but lying on my left side with a pillow between my knees helps. It took me 3 months to get an appointment with the consultant - she said straight away that I should take Evenity. She’s had 200 patients on it and all have improved their bone density some by 1% most around 10% and one person by 30%. She gave little advice on exercise and what else I should to help improve things. The ROS was more useful but I felt most of the people exercising on the website were older than me and not as fit as I was. So I went to a private physio who said I should do resistance weight training at the gym. I now go twice a week and have gradually increased the weights I can lift. I also brisk walk for 30mins every day and do heel drops. I also go to pilates (the instructor modifies the exercises for me) and I do a spin class once a week for cardio. I have been taking Evenity for 5 months - I also eat 5 prunes daily and 5g bovine collagen and do Qigong bone breathing - basically anything I can find that builds bone! Evenity side effects aren’t too bad - bit of a headache, bone pain and tiredness the first week after the injection. I take the bone pain as a positive sign that it’s building bone. I am very hopeful that my bone density will have improved on my next bone scan. I do worry about what it means long term but I’m really trying hard to stay positive and enjoy all the things I can still do. ThNk you for replying it’s good to talk to someone in a similar position. Hope your fractures soon heal and the pain reduces x
Hi, when I was diagnosed my spine score was -5 and hip -3.9 with a healed compression vertebrae fracture. I too had Evenity for a year and was amazed that my spine score had decreased by 23% to -3.9 and my hip score decreased by 20%. For the past eighteen months I have been on Denosamab injections but have not been advised when I will have another DEXA scan. However, no further fractures thankfully and I feel fine.
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Hi Bayleaf - that’s fantastic news and so good to hear - thank you for replying x
Thank you for your advice and there is light at the end of the tunnel …as like you are I am an active person..to fearing that I wouldnot be able to do anything again…and that you are improving your health too has helped me…I needed this today
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Hello,
I too have -5 in my spine, with three vertebral fractures - now healed. I am about to start teriparatide. I have actively sought support from various avenues, namely from American support groups, because I have found a real lack of support groups available in the UK, apart from ROS. It seems that osteoporosis is the last outpost in the provision of care. Medics have not mentioned exercise, mindset, diet, or lifestyle. It’s a bit like menopause was ‘treated’ 20 years ago.
I feel hopeful about the future, after a few low months with fracture pain and feeling hopeless. Now, I am able to exercise gently, have changed my diet, and I am planning to fight back and build density as best I can.
Don’t lose hope. I wish you all the best for a strong future.
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I was diagnosed October 2025 with severe osteoporosis at 56 and suffered many spinal fractures. The pain has been horrendous and nearly 11 months on since the fractures in June I am still in pain. Tried all sorts of very strong medication including morphine which I have just stopped taking because it makes me restless and I can’t sleep. My body feels peculiar too, like I don’t know it anymore. Started Romosozumab in March. Every day is a struggle. I can’t even contemplate any exercises yet. Ten minutes pottering around the kitchen is the most I can manage. Feels like a death sentence at the moment. Can’t help but feel sorry for myself. I expected life to be like this when I was pushing 85+ not at 57. It’s very debilitating when you can’t do anything without being in pain.
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