Tocilizumab and weight gain

[994464]

Hi how many people on here on tocilizumab for RA have had unwanted weight gain?? I'm really hoping there are some positive stories

[allanah]

Luckily i feel much better and lost weight through being able to move easier on TCZxxx

[Brushwork]

Only 3lbs for me but I’m only on week 6 and had lost too much due to RA anyway. I don’t know if it’s a known side effect.

Sorry not much help really

[Silverpixie]

I have been on this drug for 4 years and had lost so much weight due to severe ra that I was told to try and put some on. I did slowly and got back up to 9st (5 feet 7 inches) after a year. 3 years later I am still 9 st. Tocilizumab has enabled me to exercise and when I was in the depths of ra I never thought I could feel this good

[Rokosaki]

I did gain some weight but I guess I was just recovering what I lost on Leflunomide. TCZ has been the life changing drug for my RA, I have my knees back!!!

[994464]

Thank you all so much for replying this is a great forum ....I am hoping this drug works for me and I can get moving a bit better and faster to try keep the weight down .I have been on and off steroids all year so I've been working very hard to keep the weight off 🤦I'm only 5ft 2 and I'm closer to 10st than I'd like to be. I know its not all about weight and there is a much bigger picture .trust me I know to well i was diagnosed with guillian barre syndrome this time last year and was completely paralysised (they think it might have been caused by enbrel so no anti tnfs for me anymore) I spent months learning how to walk again so I know there are much bigger risks with all these biologics but for now I'm just trying to deal with one side affect at a time

[oldtimer in reply to 994464]

I find that I have to keep a close eye on what I eat when I'm on steroids.I don't seem to have an 'off' switch for my eating and eat more than I need.

When I realised, I started keeping a written record of all my food (and weighing it) It really made me notice when I was having the extra biscuit or a second helping or a larger slice of something.

I also wrote down how much exercise I needed to do to burn off one lovely oat and honey biscuit (which I love). This made me realise that although I wasn't doing as much exercise, the main thing I needed to do was eat less!