I’ve been told I need to go on Romosozumab but I’m worried about the side effects and what happens after a year when you have to stop and the resulting very high risk of fracture. I’d like to know people’s experience of this drug, both good and bad. Thank you, Michelle
Hi Hope,
I’m over half way through taking Evenity/Romosozumab and, fortunately have felt really well whilst taking it. I was very anxious self injecting for the first time - wondering what effects this was going to have on me! I had my training from a nurse via Zoom, who was very practical and reassuring. She actually rolled her trouser leg up and demonstrated putting the needle in her thigh! I’ve continued to take it this way. After the first dose, I did feel a little under the weather for the rest of the day, like I might have a cold brewing. I can honestly say since then I’m actually feeling much stronger and more optimistic about a recovery of sorts. I was diagnosed with severe Osteoporosis in my spine 4-2 on first Dexa Scan - I’ve had 3 fractured vertebrae T7, 8 and 9 and lost 3 inches in height. I waited 3 years for help, it was only after amazing advice from a nurse at ROS that I found a way to get help. My 2nd Dexa reading, taken before I started Evenity, showed a slight improvement from just taking the Alendroic Acid (which I hated taking). Last Spring I was in a lot of pain after the 3rd fracture and feeling my life wasn’t going to be the same again - now I’m enjoying long walks, gardening again and have returned to my Art studio, planning my next exhibition! So I wish you well Hope xx
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Hello Hope. It is only natural to feel worried and anxious about the thought of going onto this treatment. I felt exactly the same and would really have preferred not to do it. However, it gets to a point where you have exhausted everything and for me I decided that things were only going to get worse for me so I had to try this drug. I completed it (I have done the video for the ROS. 'How to take Romosozumab). I made sure that I drank plenty of water the day before, the day of and the following day. I took paracetamol as a precaution the first time. I did experience some bone pain throughout in various parts of my body. Not enough to stop me doing anything and usually short lived. I always injected in my thigh. I hated the thought of injecting in my stomach but some people find this suits them. I always made sure after I had done the injections that I would not lie about and found that taking a short walk helped me. I already had a plan in place at the start that I would move onto Zolendronic infusions next. I am now 8 months into the 1st of these infusions. Again I followed all advice i.e. drinking plenty of water and have to say that apart from feeling more tired than usual for about 6 weeks I have been pretty much symptom free on this one. I had a DEXA scan after I finished Romosozumab and then went for a REMS scan this year, now that I am on the Zolendronic infusions. My bone density has shown significant improvement so these treatments are obviously working. Also the dentist on Xrays has seen improvement in bone health. In answer to your question. I am currently on a 4 year plan made by Consultant. 1 yr of Romosozumab and then 3 years of Zolendronic infusions. At the end of this treatment plan I am presuming that they will scan again to see if I am able to have a pause in treatment and then start again at some stage. Wishing you all the very best on your journey
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This is so reassuring and uplifting to read I’m so happy for you and thank you x
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Thank you so much for this. You said you now go for long walks. Were you unable to go for walks before because of pain? I’m unable to walk more than 20 minutes because of back pain which means im stuck at home most of the time
Hello Hope,
Oh no, It took months to get back to walking as I used to! I have a small dog, so I had to push myself to go out every day, it wasn’t enjoyable but I knew I wouldn’t recover if I stayed indoors. My stamina was also damaged because of pain, lack of sleep and pain medication. It was agony at first but a neighbour commented one day and said I was much more upright than she’d seen me for a while! It helps to do some gentle stretching in the mornings, before you go out. You can improve but it doesn’t happen overnight 
Hi Seagull 5. Well, even though it took a long time to get back to walking, you have done it so that is brilliant.
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Thank you 28Harvey28
Hi Hope, my DEXA scan showed a score of -4.4 which is in the severe range so like you I was advised I needed Romosozumab. I’m a real one for reading up about everything before I even consider embarking on it and I have to say I got my self in a real pickle worrying about the side effects. For me I always start with worse case scenario then work backwards to best case so my concern was the (only very slight) risk of stroke or heart attack. My Rheumatologist put it in to perspective for me as she said I was at very high risk of further spinal fractures (I’ve had 7) but at very low risk of stroke or heart attack. Put like that I knew I was going to go forward with Romosozumab. I started in Feb so I’m almost 5 months in and in terms of minor side effects I have a headache for one or two days after the injections and some minor soreness and swelling at the injection site. Initially I was injecting in my thighs but doing this repeatedly was making my thighs very bruised. Given that there is much more flesh on my stomach area (thanks to the protruding Osteoporosis stomach 
) I changed to that last month and I have to say for me it was definitely better. Everyone is different though so you have to find what suits you best. At the end of the 12 months I will have a Zolendronic infusion which will last for 12 months. Definitely preferable to the weekly Alendronic Acid tablet. I am very excited to see what improvements there are (hopefully) in my next DEXA scan. It is an odd one that all this bone building work is going on inside us yet we feel nothing at all. I try to visualise all those holes in my bones filling in which I certainly hope is the case 
Good luck with the injections and stay positive x