Tocilizumab

[Beth72]

Hi everyone Iv been on these injections and Iv noticed that I’m gaining weight has anyone else had this 💕💕

[skinnycappuccino]

Hello Beth72 - I'm not on Tocilizumab myself but a friend of mine is and she hasn't gained weight. In fact, she switched to this medication form another biologic because of weight gain. It turned out that she had lost quite a bit of muscle and that this was related to the weight issue, she's seen a specialist and is now going to the gym for strength training and now her problems have gone Hope his helps! Best, Christine xx

[davannh in reply to skinnycappuccino]

Yes, I have been on Tocilizumab for 11 years and I have put on a considerable amount of weight. I had to stop taking it for one year and I thought I would lose weight but I didn’t! However, it makes me feel so much better as during the one year off my RA was out of control.

[Silverpixie]

Tocilizumab was my fifth biologic and it has been life changing. I am 5 feet 7 and was 9st (aged 50) before ra. After weight loss (simply because I was so ill) and weight gain (steroids) since tocilizumab I am back to 9st and have been that steady weight since then. I also take 2 dmards (leflumonide and azathrioprine). Tocilizumab has enabled me to exercise (starting a Pilates class at 9 this morning), I walk miles and do a fair bit of strength training. I work part time. This is the woman who struggled to dress herself and resorted to elasticated trousers 8 years ago! I'm now 60. So the answer to your question is no! I have an occasional glass of wine, no crisps, biscuits, puddings etc and cook from scratch every evening. I almost always have a cooked breakfast and rarely eat between meals. I cannot believe that I am thinking of taking up paddleboarding (I live near the coast and all my friends are into it). I do get flares and have to take a break. I really hope if works for you and you get your weight under control. If my 53 year old self could read this post she would think it was not possible. Take care and good luck and if it does work (I really hope it does), you have to work hard and be disciplined to regain what ra takes away

[Maggsie]

Hi Beth, I sympathise on the weight issue. I've always been a bit sceptical when people blame the drugs for weight gain but since starting Tocilizumab in December 2020 I have gained weight. I've been on quite a few medications and have always stayed a stable weight (+/- 2kg)I've reduced my calorie intake and upped my exercise and am still struggling with this . I've also started getting a very sore mouth post injection which lasts for 3-4 days.

The Tocilizumab is working so I might try taking it every 2 weeks to see I it reduces the side effects.

[lilyak]

Tocilizumab is well known and well accepted to cause considerable weight gain in SOME patients. Unfortunately, if it happens to you, it is impossible to shift that weight. It's a matter of weighing up the good the medication does, against the weight gain. Obviously a healthy diet and exercise help, but many people can do nothing to lose the weight, or increase muscle mass and reduce body fat. It's very frustrating. What's more frustrating is how often people who haven't experienced this, including rheumatologists, will victim-blame and gaslight and deny its a known side effect of the medication. A quick google will show you that its a known effect. Even more confounding, some patients actually lose weight while on the medication. You know your body and you know if what you're doing shouldn't add up to weight gain. If that's the case, yes its the tocilizumab.