Weight gain

[Roostermum]

Just wanted to ask if anyone has experienced an issue with weight gain on Tocilizumab? 🧐

[Allije]

No Roostermum. I cant in all honesty blame the Tocilizumab. Only I am in control of my hand -to- mouth coordination 😋. Had RA for 34 years and always been slightly overweight, but even a few pounds is unnecessarily adding strain to already sore and damaged joints so decided to make a real attempt at getting rid of excess.

I had opportunity recently to see Michael Mosley who talked about his life experiences with health etc. and the 5:2 programme he has developed which is quite enlightening with regard to inflamation so I am at very early stages of this and will see how I get on.

As we all know people's reactions to drugs can be very different, but I do know that I eat too much for my size (5ft) so i am going to try and to do something about it.

Best of luck. A

[Roostermum in reply to Allije]

Thanks so much for your reply. 😊

[lilyak]

Tocilizumab is well known to cause massive weight gain in some people. Its an IL-6 inhibitor, and IL-6 is involved in fat metabolism. If you google it, there are many studies showing that it inhibits weight loss. There was one study that showed even with diet and exercise, the group taking Tocilizumab were unable to lose weight, at all.

Having said that, only you know if you are over eating, or if its the medication. I have been on a very restrictive diet for over two years, and am still unable to lose the weight that I gained when on this drug. On the upside, it has improved my pain very much, even though i am no longer taking it, my RA has changed permanently. But in truth, it has NOT been worth the weight gain, and I never would have taken it if I'd known that this is what would happen.

Best of luck with the weight loss, some people are able to lose weight when they come off the drug.

[Roostermum in reply to lilyak]

Really appreciate your honest feedback, really valuable. Thanks so much for taking the time to reply. 😊☀️

[Ozzy]

I been on it for around 5 years and put on weight since having ra, but I feel that a large part was due to be to tired to cook healthy so just grabbing was easily. I have now been swimming more and watching what I eat for the last two years, I have lost weight but it is slow going because if I overdue the excise I still pay the next day. This is due to how damaged my joints were before i was put onto tocilizumab, since being on it I finally now have a sort of normal life again, still must pace myself though.

[AmyDee207]

I have been on Tocilizumab for about a year and a half now. I have gained about 10-12 kg over this period of time and although it is not that much it has been very difficult for me to lose weight.

Before if I wanted to lose a few lbs for a holiday I was able to eat healthy and go swimming and I would see my weight decrease slowly each week over a couple of months. But this time round I have been eating very healthy and I have been walking and I am not losing any weight at all. I went to the doctors and they suggested orlistat on a low fat diet which I tried and still nothing. I find it very frustrating because the extra weight does not help with my bad knees.