Hi, I just thought I’d contribute that I had my first injections of Romosozumab yesterday accompanied by the Pharmaxo nurse who talked me through it all in an online video call. I was dreading it and assumed it would be a) very painful and that b) I’d get immediate side effects. I do know some people do and I hope very much that most people find a way to manage these successfully.
But hoped it might be useful for readers to hear that for me at least it’s been straightforward and I don’t feel any different from usual. No probs with the injection, small swelling in thighs afterwards, gone today. I’ll keep you posted.
I think it’s important to try to stay positive about the medications. I was diagnosed with osteoporosis last summer via a DEXA scan, then had a private REMS scan - in which I was told my risk was low and to manage with diet - 3 months later had a major osteoporotic fracture.
I’ve decided to follow a medical route. I have a serious family history on both sides of osteoporotic difficulties/fractures and spinal collapse hence being prescribed this new and expensive drug on the NHS.
Hi. Thank you so much for letting people know about your experiences. I have been on Romosozumab and now 6 months into follow on treatment of Zolendronic infusions. Like you I had Pharmaxo and the whole process was brilliant. They always phoned me to arrange for next 3 month delivery and took away sharps bin when needed. I do not regret for a minute going down the treatment route. By month 7 of the Romo I was feeling the best I had been and my back and spine which had felt what I can only describe as floppy had become so much stronger. Once this happened I started to introduce gentle exercise (online) and over time have become much more mobile and overall much calmer, no longer living in constant fear of fracture. Any little blips along the way I have now manage to think positively about and that whilst I might not feel that great today then tomorrow is likely to be different. And it has been. I suffered some bone pain on the Romo but this usually didn’t last long, sometimes only hours. Very strange I know but as this medication is a bone builder I decided to treat the pain as a positive and that the medication was working. I am not on any medication. Take occasional parecemol, but that is usually if have headache. Take Vitamin D3, K2, on gluten and dairy free diet (as not able to tolerate) but ensure I eat food rich in bone health sources. Wishing you all the very best on your journey
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I’m into month 3 of Romosozumab. I have found that the self administered injections are easy to work with. I do get a slight swelling & soreness in the two injection sites but these only last about 3 days. Some say that there are less reactions when injected into the abdomen as there is less muscle but for me it makes no difference so I do one in the thigh & one in the abdomen. I look upon the soreness as a positive thing in as much as the drug is present & working.
There appears to be many positive experiences following Romo with increased bone density & strength seen via Dexa. I would recommend anyone to push their GP for a Rheumatology referral as this relatively new drug is giving good results whilst many patients remain on the standard prescription of Alandronic Acid. If at first you get told that you don’t need a referral, ask another GP in the practice - it worked for me!
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Thank you it’s nice to hear of people doing well on medication especially when it’s a new and powerful one like Romosozumab. I’m particularly thrilled to hear that your back and spine feels stronger because I currently have a floppy S-shaped spine which is why I was offered the Romosozumab which my consultant tells me costs the NHS £600 or £700 per month! I weirdly only have Osteopenic T scores - bilateral hips T score -2.3, Femoral Neck -1.6 and they did L1 and L2 of the spine at T score -2.2 because of degenerative changes at L2-L4. I’m writing this all here in case it helps anyone else researching their condition. DEXA scan July 31st 1015, 3rd December 2025 I slipped and smashed my shoulder. This, apparently, has raised my risk of fracture very significantly and together with my family history made me a candidate for this drug. I am a 68 year old woman, 5ft 3inches now (I was 5ft 6in) and BMI 21.
You say you’ve suffered some bone pain, to be honest I think I can cope with some muscle and bone pain and will like you treat with paracetamol because the broken shoulder was excruciating and I’d like to avoid more fractures if at all possible. I’m now taking calcium, Vitamin D etc supplements and trying to eat more dairy, protein and prunes. As soon as my shoulder is a bit better and when I feel more confident I’m going to try to exercise more to build core muscles as I have been advised. Don’t actually know how to do this but I with research it - so far I think it means pilates.
Anyway thank you for replying and good luck to you too.
Sorry - can’t edit! I had my DEXA in 2025!
Interesting what you say about injecting in the thigh and abdomen. I hadn’t wanted to inject in my thigh but the nurse said that she thought it was the easiest way to do it because there’s a relatively firm surface whereas the tummy area has more squidgy fat, this is true in my case. I’ll see how it goes, interesting that you inject in two different places, I may try this if the thigh becomes painful.
From my limited understanding I think it’s hard to get informed medical treatment, you need to be a bit lucky and/or persistent. It’s why these forums are so great and why I wanted to share my experience to help anyone who might like to ask about this drug - even though I am only at the early stages - I feel lucky to have the chance to use it.
Thank you for sharing your experience.
Hi Belsize and welcome! Thanks for posting with your experiences of Romosozumab, really helpful for everyone to read about positive experiences of this medication. I was reluctant to take the Romo mainly due to concerns about side effects. After having all the blood tests and with encouragement from the rheumatologist, I started on it three months ago. Like you and other members who have already replied, my experience has been very positive so far - some bone pain initially, but good to know it’s working. I’ve had a few headaches and sometimes feel a little more tired than usual, but apart from that it’s all been so much better than anticipated and good to feel I’m doing everything possible to prevent further fractures (already have four) and hopefully improving my bone density as well.