Romosozumab

[Doormouse100]

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?

[Sleeplessinlife]

I'm not on romosozumab as you can see, but I definately get stiffness around my hips like you describe. I'm doing best to excercise daily, just about to head off for half hour walk and same back again. I get so frustrated at my limits, excercise has taken me so far...but I feel static now in my progress. However, reading about others going thro same issues cheers me up in a bizarre way, I think it's cos you feel less alone with it all. Hope everyone has a good day today, it's 3 degrees here ! Jumpers on and off we go!

[Doormouse100 in reply to Sleeplessinlife]

Thanks for your reply. I am looking to speak with others using Romosuzumab just to compare what could be a side effect. Thanks for connecting with me and I hope you feel better at some point soon

[Jemi7266]

I took it for 1 yr ending Aug 2024 and I had both bone & muscle pain in my legs & hips & spine. I think it’s just the med doing the work. About 30 days later that pain is gone.

I do Yoga, Pilates & Resistance band exercises.

[Doormouse100 in reply to Jemi7266]

Thanks very much for your reply, glad to know our symptoms are similar and yours went.

[cmoc]

I took it for 11 months and came off due to side effects that got worse each month. I then tried Actonel, Evista and A Acid in very small doses but they all gave me bad migraine and I couldnt get to see the consultant so, to try and keep the gains I took the 12th Evenity injection (after being off for 4 and half months). I had the heavy lead legs started the second half of the year on Evenity and they have not left me, (still there), the migraines have been terrible (not horrendous when on Evenity) but more since trying all the drugs and the last injection of Evenity continuous migraine for a month and I am now still looking to take a drug to hold on to any gains I might still have. I am very med sensitive so these drugs are a nightmare to me but I already have multiple fractures in my back and dont want any more.

[Doormouse100 in reply to cmoc]

Thanks for replying to my post. I wish you all the best

[BentleyBowtie]

Yes pain was so bad plus I developed high blood pressure and high cholesterol from taking this drug. However I just stopped it which I shouldnt have done and got rebound effect

[Doormouse100 in reply to BentleyBowtie]

Thank you

[Doormouse100 in reply to BentleyBowtie]

Thank you

[cmoc in reply to BentleyBowtie]

Can I ask what rebound effect you had coming off it

[EllieJ1970]

Hi Doormouse - I am at the same stage as you on Romosozumab and have very stiff knees and my legs feel very leaden. I am also getting quite a lot of joint pain. I hope this helps - I actually found it comforting to read your post, and all the other replies as I thought it was only me!

[Doormouse100 in reply to EllieJ1970]

That’s good to hear. I too felt unsure about the feelings in my legs and hips. Thank you for your reply.

[ROSModerator Partner]

Hi Doormouse100 ,

Just wanted to wish you a warm welcome to our community 😊 Thank you for joining us here and sharing your experience! Being around other people who understand our experiences can make such a difference, so we really hope you continue connecting with our wonderful members 😊

If you haven’t already checked us out, we have lots of information and support available on our website: theros.org.uk/information-a...

Wishing you all the best,

Lulu

ROS Moderator

[Doormouse100 in reply to ROSModerator]

Thank you Lulu

[nottowell]

I have been on it for a few years with no side effects, but you must make sure you have the bloods and injection within the 6or 12 month period or you could have a rebound fracture.

[WellThatHurt]

Hi, I took the full 12 months of Romozosumab without any side affects at all.

[Doormouse100 in reply to WellThatHurt]

Hi, thanks for the reply. Glad you took the treatment so well. Have you had a subsequent Dexra scan and if so, did it show an improvement?

[WellThatHurt]

Yes, it was a 10% improvement. Spine from -3.0 to -2.6, Hips from -2.8 to -2.2 and Femur head from -3.6 to -3.2. I'm now on Denosumab.

[Doormouse100 in reply to WellThatHurt]

Thanks for sharing that.