Hi, completed my 12 months of injections. Dexa scan shows a 14.5% improvement in bone density and back to Osteopenia. I have experienced side effects so will post again to let you know how long it takes to go away. Last injection was 3rd Jan. I have muscle aches/tightness, sore joints and cramping. Other on here have experienced similar.
Hi. That's really good news. Can I ask what your Dexa scores were prior to going on this. I am half way through this treatment and hoping that every pain I am getting is a sign that it is working to improve bone density. Hope your pain/aches start to improve soon.
Spine in 2022 -2.8 now -1.7
Thank you that's really encouraging. My Dexa score in 2023 was - 3.8 in lumbar and at that time I had several fragility fractures of spine and pelvis. Going onto Zolendronic infusions for at least 3 years after Romo. Hearing your news helps to keep going to improve bone density and not to just maintain. Hope yours continues to improve
I too will be on the infusions for 3 years
Hi - can I ask what pain you are getting? I am getting various pains and find it comforting to know that others are experiencing similar. Although obviously I wouldn't wish all this on anyone at all!
very tight muscles around the hips and thighs and aching joints to hips. Very unsteady on my feet. Legs feel like they aren’t mine.
Hi thanks for replying I feel the same too.i have been on aledronic acid,prolia now zoldronic acid for 3 years
Good luck
Hi, good improvement. I understand you qualify for this medication if with previous fractures from osteop.? At least I was told so. Thank you
Yes that’s right. You have to be at high risk of fracture from a fall at standing height. I had tow fractured hips and two broken wrists within 18 months.
May I ask please, before the pharmacists release this drug, are the criteria, a fracture in the last 2 years and/or a t score of >2.5?
Thank you for your replies
For the correct definition best to ask your Rheumatologist. High risk of fracture comes to mind but ask to be sure. This was the compromise reached with NICE as they turned the treatment down initially.
That’s fantastic news, and really encouraging for others who are having the treatment.
Your score of -2.8 though was only just into the Osteoporosis range and I would be really interested to know the results of anyone with severe Osteoporosis who has been on the same treatment. ( if anyone has results and is reading please share your results with us)
Were your hip and wrist fractures a result of a fall???
Yes, falling from standing height so should not have broken bones normally.
Hi Doormouse100,so pleased for you to have improved your bone density by 14.5%.It's encouraging too for those of us who are still doing our Romosozumab jabs,I'm only 5 mths in. I know not everyone has had such good results as you ,but it's certainly worth trying. Thankyou for posting ,we all need possitive stories to keep us going.
Have you had fractures? As my T10 compression fracture was why I was offered Romosozumab.
Hope it all goes well for you now and you get good followup to top up the good work , such as yearly infusions.
Yes, two hips and two wrists within 18 months.
Goodness that was alot in 18mths. !!
Thank you for sharing your posative results, I’m considering stopping my injections due to continual upset tummy but after reading your post I’m rethinking my decision.
Hi - I have longstanding gastric issues as well as osteoporosis, but the gastric symptoms have worsened since I've been on the medication. When you say upset tummy, do you mean diahorrea/bloating or something else or as well?
I too considered giving up but with these results I am glad I kept going. This site helped me.
Hi - that's really good news and I'm happy for you. I am nearly at the end of the same medication and have had similar side effects. When you mention cramping, can you explain a bit more? Where was the cramping?
Neck, hand, feet and calves. Also very tiff buttocks and upper thighs plus aching joints. Sloes my walking down. Am hoping this will clear up. How long before yours cleared up?
just really rotten tummy , feels like I’ve a lump in my throat after eating , I had the same when taking Anastrozole but changed the time of taking and it stopped, I’m bloated as well but that’s been going on for sometime .
Have you had a blood test recently?low iron can make it difficult to swallow, sound strange but it's true so it maybe a good idea to get it checked xx
Great to hear positive news. My scores -3.8 in hips and spine after breaking both wrists , just finishing 12 months of Romo, main side effects was tum upset. I have continued exercise and some weights. Will update re next Dexa scan
Great, good luck
I'm glad to hear it's worked for you! I'm halfway through my romosozumab, so that's positive news for me. I haven't had any side effects that I'm aware of.
Mine didn’t start until around month 7 then got progressively worse each month.
That's pretty impressive to hear, and extremely encouraging, thanks for posting.
As this is a new drug in the U.K. at least we need to share results so glad to have done so.
Is this like denosumab (Prolia) in that you need to take something like a bisphosphonate after stopping to avoid rebound osteoporosis?
yes similar in that they like you to have an infusion after to lock in the gain
hi Doormouse thanks for this positive post and all the replies. I am on last Romosozumab jab in February. Similar reactions to others particularly in later jabs. On to zolendronate next! I have had hip fractures pelvic and spinal fractures but this drug has got me back on my feet and I would definitely recommend people to stick with it if you can
Please let me know how you get on with your Dexa scan results and also how long it takes you to get rid of side effects.
I will
Romosozumab Update: Severe Joint Pain
Dispensing of Romosozumab
starting Romosozumab soon
