Tocilizumab

[994464]

Hi I started tocilizumab about 22 weeks ago and it hasn't helped at all and I have gained half a stone in no time despite my exercise and healthy eating efforts ..it's so frustrating ....so 2 weeks ago I told my rheumatologist that I was coming off it as I can't afford to gain anymore weight .....my question is has anyone who has been on this drug gained weight and successfully lost it either while still on the drug or after coming off it ??? I stood on the scales this week and looks like I'm up another two pounds despite not taking the injection for two weeks now 🤦🤦🤦

[Hidden]

I don’t take this drug but since starting biologic/jak my weight has gone up and up like you despite my best effort’s including the 800 diet I’ve tried them all. I eat healthy and good portion control but nothing works I think personally the drugs change our metabolism I’ve no evidence just can’t find another answer.x

[Neonkittie17 in reply to Hidden]

Yes agree re many of our meds altering the metabolism. x

[Jan101050 in reply to Hidden]

Most biologic meds I have taken tend to put on weight especially around the tummy area. It’s no fun and I hate my clothes not fitting. I don’t weigh myself but just go with the fit of my clothes.

[Ozzy]

I have been on it for a long time and I am now the fittest I have been in years, swimming, cycling and walking more, so I guess that keeps my weight down but I gave up weighing myself as it just depressed me as I put on a lot when I was first diagnosed back then I could hardly move.

[994464 in reply to Ozzy]

I've had gbs recently and because of that I am at the gym 3 days a week trying to make myself stronger .....this is probably the most I've ever exercised in my life despite stiffness and pain in the mornings I go to the gym and it helps loads but Im just getting heavier by the day and now it's really affecting my mental health .....maybe I should stop weighing myself also

[Ozzy in reply to 994464]

The only pain I have is from damage done before I was on a drug that actually worked. I now have zero swelling and very little tiredness when I get up in the mornings. Be careful not to overdue the gym, an injury at the gym is how my Ra journey began. I would worry less about weight gain and more about why you are still suffering stiffness and pain, have you improved at all since you started Tocilizumab. I felt an improvement a couple of weeks after starting it and I am now in clinical remission.

[Silverpixie]

I've been on it for about 5 years. Transformed my life. Fittest I've been for years. Walking miles and Pilates. No weight gain whereas beforehand I was on masses of steroids and put weight on.

[994464 in reply to Silverpixie]

So happy for you ☺️ enbrel was the drug that did that to me for 7 great years but then I got guillian barre Syndrome from it so no anti Tnfs allowed anymore and nothing else seems to be working 😰

[Mmrr]

Tocilizumab did not agree with me, I was so immunosuppressed with it, mouth, fungal and WCC issues. I only lasted 6 weeks before I had to stop taking it, but I continued to lose weight whilst I was on it. My weight has been an issue since becoming unwell with RD, I've always believed there is a metabolic component to the disease.

[994464 in reply to Mmrr]

It's a horrible disease and one I believe is not taking seriously enough...hope you get yours under control

[Emye343 in reply to Mmrr]

Mmrr,I’m the same . I lost half a stone prior to diagnosis (down to 7 stones) and have been as low as 6 and a half on methotrexate. I’m currently hovering just below 7 on humira and a lot of food! This disease certainly affects people in very different ways.

[Mmrr in reply to Emye343]

I gained 5 and a half stone since becoming unwell with RD, I've taken if all off. I have looked after my diet, but found if so much easier to loose weight once I stopped MTX and commenced advanced therapies.

[Emye343 in reply to Mmrr]

Glad to hear you managed to shift the weight you had gained. I’ve not had the problem of gaining weight since developing ra, more a problem with losing it!

[Maggsie]

I've been on Tocilizumab since Dec 2020 and it's been great for my RD but have had quite a few side effects since having my covid jabs (mouth ulcers, cold sores, shingles in my mouth). I have put on some weight and like you I'm conflicted about continuing if the weight gain carries on.I've had a course of anti viral and agreed with my rheumy team that I'm going to try injecting every 2 weeks to see if that helps settle things down. I really dont want to give up as I had 3 awful years post Enbrel and this is the best I've felt for a very long time.

[994464 in reply to Maggsie]

Hopefully things settle down for you I haven't even received my vaccine yet as I'm so scared to receive it in the middle of a flare and while I'm trying out all these new biologics.....I'm also like you having an awful time post enbrel ....did enbrel just stop working for you

[Maggsie in reply to 994464]

Thanks for the reply, no Enbrel didn't just stop working. I was switched to a cheaper Biosimilar (Benepali) after 13 great years. I then struggled before trying Rituximab , but by then I needed joint replacements, which caused problems with the scheduling of infusions and operations.So after 3 rubbish years , I'm willing to give Tocilizumab a really good try , even though I'm putting on weight. It's so hard for those of us who have struggled with their weight for so long. I've managed to keep a consistent weight for 10 years and hate the fact that I've gone up a size.

I'm going to keep going for a few more months and hope I can keep going with Tocilizumab.

[oldtimer]

If you are still gaining weight after stopping it, perhaps you need to take a look at your intake in detail as well. I often find that, despite my best intentions, it creeps up with the extra little bit here and there adding up to more than my body needs. I have to go back to keeping a record for a bit to get it back under control.

[Maggsie in reply to oldtimer]

This is exactly what I would have said pre my Tocilizumab experience !I used to think that people were making excuses for the weight gain but....after 10 years of weight management and staying within 1 or 2 kg I've found that I really don't seem to be able to keep control, even when reducing calories and upping exercise. We live and learn!

[994464 in reply to Maggsie]

I am the same I always control my weight so well until I started tocilizumab if I went up 1or 2kg I'd get it off me no problem by watching my intake etc .....but since tocilizumab it's impossible I'm just hoping in the next few weeks I see a change now that I have decided to stop taking it 🤞