Experiences with

Romosozumab

Hi, I wanted to post this 1 month post Romosozumab 12 month course. I am now a month clear of the end of my 12 month course. The quite severe side effects of stiffness to hips and buttocks plus joint pain I experienced from about month six onwards has now disappeared.

Has anyone been on Romosozumab/Evenity and did their BMD improve?

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.

My consultant is pushing to get Romosozumab/ Evenity for me and I wondered is anyone had taken it and how they found it? Please do not scare me with negative experiences and side effects if possible!

I am almost 7 months in to my 12 month journey. I would like to connect with others on this drug. What I am experiencing is what feels like muscle stiffness around my hips and my legs feel very heavy and sluggish. Has anyone else felt this?

I usually do my Romosozumab injections on the 29th of the month. February does not have 29 days. Not sure whether I should do them the following day 1st March and then go back to 29th of the month. So would do the 29th March as well and there after.

HiHas anyone been prescribed Romosozumab, if so how are you doing? I have PBC /AIH overlap, cirrhosis and Osteoporosis. Thanks

si=hj85G5ZJqUjcP0L3 Osteoporosis specialist nurses Kirsty and Vivienne share tips to help with starting, storing and travelling with the self-injectable, osteoporosis medications called teriparatide, abaloparatide and romosozumab.

Just wondering if this deep ache in my upper arms is to do with Romosozumab. I have now had this for 6 mths,I don't inject my arms ,but my abdomen .During the day I can feel the ache,but at night it's keeping me awake. I get comfort sitting up with lots of pillows and try and sleep like that.

I have just finished a 12 month course of Romosozumab which left me with a slight improvement and now my T score is -3.4. I was constantly told through my recovery I needed to feed my bones and eat, otherwise my bones would suffer As I felt fine I ignored them.

I am 2 months in ,giving myself monthly injections of Romosozumab. Is anyone else on this drug? The injection site is always painful afterwards,after about an hour and bulges, and goes red and itchy over 2 days then it's fine. That's the only side effect thankfully so far.

The consultant would like to prescribe Romosozumab. He says this is licensed for men, though not commissioned by the NHS for them, because the rarity of men with osteoporosis means insufficient research has been carried out on men for its efficacy in males to be known.

I have had a zoledronic infusion, prescribed Evacal D3 and due to commence romosozumab injections. I have a resulting kyphosis. This has all been a total shock and my journey familiar to others I'm sure. It would be great to share my experiences good and bad and learn from others too.

After waiting 18 months I finally got to see a Consultant who advised Romosozumab injections. I was told by the hospital that my prescriptions and learning how to give myself this treatment monthly would be provided by a private homecare company.

I've just started on Romosozumab (Romo aka Evenity) and so far so good, I think it's even helped a bit with the pain I'm now looking for tips for life after spinal fractures. The info on the website is great but also looking for practical advice eg can anyone recommend a good rollator/walker?

I was just about to have a DEXA scan on Wednesday 4th December before being considered for Romosozumab, but stupidly attempted to pick a heavy scanner off the floor. Heard the crack, felt the pain and crawled to the orange cord to summon the warden.

Because the risk is so high given my age (young at 63 but post-menopause) and long-term steroids I may be eligible for Romosozumab which is quite a new treatment. I'm going to contact the Royal Osteoporosis Society but in the meantime thought I'd see if anyone else has any experoence to share.

My GP whom is just the best ever contacted an endocrinologist and he suggested going right away to Romosozumab monthly injections. Will start as soon as Health Canada and cancer clinic approve. I've read almost everything anyone has posted on this forum.

Does romosozumab work any differently? Are there any osteoporosis meds that she could take that will help maintain the gains she gets that won’t increase her risk of bone fractures because of the way they interfere with the osteoclasts / bone reabsorption.

At 76 I much older than Tangocharlie but no one mentioned Romosozumab to me. I wasn’t actually offered anything! Just said he wouldn’t give me another appointment but would not discharge me for 6 months so I could go back during that time if I needed to.