Tociluzumab

[Bethany02]

Anyone on Tociluzumab having experienced bad cramps. I'm not finding it as good as benepali either

[Lolabridge]

Hello Bethany.

I'm on Tocilizumab and haven't experienced any cramps. Are you getting abdominal cramps as I think that stomach irritation and abdominal pain are known side effect of Toc. I suggest you let your Rheumy team know whether it's abdominal or muscular cramps you are experiencing.

Also, if you've given the Tocilizumab plenty of time to be effective, do also tell them you think it's not working as well as Benepali.

Neither Benepali or Adalimubab (both are anti TNF biologics) worked for me but I find that Toc (an IL6 inhibitor) works quite well, even without the back up of Methotrexate. I do wish our Rheumy's could workout what is likely to work best for each of us without this trial and error approach that can take some time!

[Bethany02 in reply to Lolabridge]

Hi it's not abdominal cramps it's my legs and feet and hands sometimes I know about the main side effects but thanks for the reply ☺️

[Dicorn in reply to Bethany02]

Hi. Try taking magnesium tablets. It definitely stopped the cramps in my legs.

[Bethany02 in reply to Dicorn]

Thanks so much for your reply 😊

[dwsurquhart]

been on toci for 7 years now and it is still working. Are you taking orally? I am getting the monthly infusion and have only had one real side effect. It lasted a couple of years. I would retain water like crazy after each monthly infusion, that I would have to take Lasix (diaretic) to get rid of the excess bloating. My body has adjusted and it no longer happens. Hopefully you find something that works for you.

[Bethany02 in reply to dwsurquhart]

I've been on it for about five/six months infusions monthly, I wish it came in a tablet then I wouldn't have to keep going on one of my days off each month. No fluid overload nor diuretics required, just the intense cramps even stretching, massage didn't relief it I had to walk it off. Weirdly I've had them in my feet too. My hands are normally the worst symptom wise with my rheumatoid and the fact that I'm having issues with stiffness and back to that feeling of being congested in them worries me that it's not doing its job. Will keep hoping but see my nurse specialist soon and see what she says. The new registrar I seen said it can take four to six months🤷

[dwsurquhart in reply to Bethany02]

If toci is not working or you have bad side effects, would be best to speak with your rheumatologist. You could inquire about Zeljanz. It is a pill form that is very similar to tocilizumab. My rheumatologist has said when and if toci quits working for me, then I will switch to that. It is a twice daily pill.

[Bethany02 in reply to dwsurquhart]

Worth knowing but unsure if the UK has that drug. The closer I get to retirement the happier I will be work and the fact that I have had lots of mess to deal with in the past month getting a new kitchen fitted probably has not helped😔 it's called Tofacitinib here looked it up

[dwsurquhart in reply to Bethany02]

Glad you found it. It is also known as Xeljanz, I spelled it incorrectly before. It is made by Pfizer UK.

A friend on mine is on it and says it works great for her.

[Brushwork]

I’ve been on Toci for 3 years now, and it is the only one (tried 3 before) that has worked for me. I haven’t experienced cramps.

[Bethany02 in reply to Brushwork]

Thanks for your reply 😊

[Tkat10]

yes I had and still have cramps if I don’t do my physio stretches everyday and I take magnesium supplements to also help but the stretches are the big influence. I never really felt the Tociluzumab really did enough to control my ra. I am on abatacept weekly injections and for 25 years plus with ra feel it is keeping the lid on things.

[Bethany02]

Thanks for that nice to know I'm not alone and will bring it up with nurse specialist 😊

[Maggsie]

I've been on Toc for a few years. I used to get an upset tum but changed the time I took my lansoprazole and that resolved the issue. However, I do get lots of niggly little infections that do take an age to clear up.

[Bethany02]

Thanks for your reply😊

[Moomin8]

Hi 👋🏻 I'm on Tocilizumab - weekly injections- and highly rate it tbh. It's given me my life back, after 5 other biologics. My liver results are a bit high, but nothing horrendous. My GP worries, but not my rheumy team. Definitely inform your medical team. Good luck with everything 😊

[Bethany02 in reply to Moomin8]

Thanks for your reply another instance where everyone is different 😊

[Typsey]

Yes Bethany02. Especially at night . Mostly in my feet and toes. Can’t move them back and forth as it really cramps up. Also the back of my calves and fingers. I’ve been on Toci now for over 6 yrs. I might try the magnesium as previously mentioned above. Take care 🤗

[Bethany02 in reply to Typsey]

Have looked into it It's been suggested that drinking 2 to 3 ounces of tonic water before bedtime can prevent leg cramps at night. Also bananas

[Typsey]

I’ve tried that Bethany. Drank those small tins before bedtime and not much improvement for me. Here I am 2.30 in the morning suffering badly at the moment . I’ll try the bananas. Thanks 🤗