Tocilizumab

[slim03]

can any one tell me if you gain a lot of weight on this drug and what the other side effects are . I’ve been asked to consider taking this in injection form for my RA as methotrexate didn’t agree with me and have been taking nothing since Xmas and really struggling my consultant has given me me an all over steroid injection until I decide whether I’m going to have it or not I’m swaying towards having it but wanted to know what other patients who are taking it think .

[Silverpixie]

Tocilizumab was (at the time) the only drug that helped me. I had 7 wonderful years on it and then had to come off it for surgery. It wouldn't work afterwards but filgotinib seems to be working. I didn't put on any weight - in fact I got really fit as I felt so well. I was about 55 when I started tocilizumab. I wasn't aware of any side effects

[slim03 in reply to Silverpixie]

Thank you so much for your information

[Silverpixie in reply to slim03]

I forgot to say - I started it late August and didn't notice it working until late December (had steroid injections August and October)

[aliplayspiano]

I have been on tocilizumab for 7 years. It works well. Before I started it I was very underweight due to uncontrolled RA. I did put weight on at first but I needed to. My weight has stabilised now and hasn’t changed much in the last 3 or 4 years. Only side effect for me is that it sends my neutrophils/white cells low so I just inject fortnightly rather than weekly.

[slim03 in reply to aliplayspiano]

Thank you yes I heard it can lower your neutrophils. Thanks for the advice .

[MistyDay in reply to slim03]

My neutrophils became low on Benepali at first. I had an infection then surgery so stopped for a bit. They came up again. I restarted Benepali. Although lower than I like, I am no longer neutropenic. I suspect many of the biologicals can cause lower neutrophils for many of us.

[Retirednhs]

I was on the Toczilimub trial but it was monthly infusions. I didn't put weight on in fact because l was able to do more and the constant fatigue eased for me l was delighted to have it hope you have a good experience with it

[slim03 in reply to Retirednhs]

Thank you I hope so too all the replies I’ve had seem positive .

[oldtimer2]

It should have no effect on your weight one way or the other, except for the effects from you being able to move around more without pain. (it takes an awful lot of exercise to change your weight!)

Steroid injections on the other hand do cause weight gain, especially if they have an effect on your appetite - I have to really watch what I eat on steroids as I don't seem to have an 'full up' switch and have to measure the food instead.

[ruth_p]

I will have been on toc for 10 years in May. It has been such a great drug for me and my CRP has been consistently less than 1 since starting on it. It was so good it started working within 24 hours of starting it. All the weight I’ve gained on it has been caused by eating too much chocolate and crisps!

[SheilaT3271]

I’ve been on Tocilizumab for 18 months and it’s been the only biologic to put me in remission range (long may it last!) with no weight gain. Good luck.

[Ruffles13]

I came off of tablets and went on the biologic tocilizimabub and I havnt looked back miracle drug no side effects no pain. Go for it.

[GLPL]

I have had 2 IV Tocilizumnab infusions but have to come off it due to really bad gut issues so I never had a chance to see if it works, on to the next drug now, good luck if you decide to give it a go, weight gain is my nightmare but if the drug works for you give it a go, some people on here sound as if they have had a positive experience with it. I dream of living a pain free life.

[slim03]

thank you all for your kind response I’m going to give it a try , some very positive feedback back . Hope it works for me could do with a break from this pain and inflammation in my body .

[MistyDay]

Possibly the steroids, and not the biological.I have put weight on since having my gall bladder removed. I am still a healthy BMI but am struggling to lose the extra half stone since the op. I will not give up trying.