Tocilizumab: Hi has anyone experienced weight gain with... - NRAS

NRAS

36,432 members45,078 posts

Tocilizumab

Hellbells profile image
8 Replies

Hi has anyone experienced weight gain with Tocilizumab?

Written by
Hellbells profile image
Hellbells
To view profiles and participate in discussions please or .
Read more about...
8 Replies
beeckey profile image
beeckey

yes 2 stone i know it sounds a lot been on it for around 4 years and cant seem to shift so you are not alone x

Hellbells profile image
Hellbells in reply to beeckey

3 stone, I know nothing shifts it at all! Hate this drug, had lots of serious infections 😔

beeckey profile image
beeckey in reply to Hellbells

i have tolerated reasonably well except for the weight but that is a pain are you on injections or infusions

Hellbells profile image
Hellbells in reply to beeckey

Infusions, currently they are suspended as I have developed osteomyelitis in a bone in my foot, they have taken me off all medication except 6 weeks of strong antibiotics 🤕

davannh profile image
davannh

I have been on Toxcilizumab for seven years and have gained over two stone. My condition is more controlled as ESR and CRP levels have dropped to normal. (From 95 & 300) Also no swelling of joints etc. So I think I just have to put up with weight gain as this treatment seems to be the only one that works.

Hellbells profile image
Hellbells in reply to davannh

It is good for joints, thank you 👍

dwsurquhart profile image
dwsurquhart

I gain approximately 11 pounds the week following my Tocilizumab infusion. I have had to beg my Dr for Lasix to help with the fluid retention. I have my infusion, then take 10mg of Lasix (furosimide), and I find fluid retention goes away.

The Tocilizumab is great stuff though. My crp was 159 and dropped to less than 0.2 in 2 months. This is after 2 years of trying what seemed like every drug known to the doctors.

A little weight gain is not so bad as long as it does not affect your breathing and such. Myself with the fluid retention, it was causing me to have difficulty breathing and catching my breath while walking.

Once I started on the Lasix the breathing became easier.

Maybe ask your doctor for a trial of the Lasix. I do not take it everyday. I take either 5 or 10mg once a week to maintain fluid levels and weight levels.

Cheers and hope this helps.

Scott

Hellbells profile image
Hellbells in reply to dwsurquhart

Thank you 👍

You may also like...

Tocilizumab infusions

all, I was wondering how people feel after a Tocilizumab infusion and how long they take? I'm due...

Tocilizumab & Travel

have done, they said no, same as hospital. Can anyone tell me a decend insulalated cool bag that...

Tocilizumab Infusions

Tocilizumab and travel

know of anything else I can use which will keep tocilizumab cold enough or will I have to leave my...

Tocilizumab infusions

Hi everyone who has been following my posts. I just wanted to let you know I finally have a date for