Tocilizumab

[Lorraine2460]

Hi there, I’m starting tocilizumab tomorrow. I wondered if there was anyone on this forum who is on this biologic and if so what their experience has been so far. Thanks. x

[KittyJ]

if you put that into the search box and filter for NRAS then all the past posts about it will come up 😊

[ruth_p]

I’ve been on it since.2015 and it’s worked really well for me. No side effects apart from allergies and itching but I’ve had that with all the biologics I have been on. A daily antihistamine has sorted that out. I hope it works for you 🤞

[Lorraine2460 in reply to ruth_p]

Thanks ruth_p, that’s just the positive news I needed. Keep healthy. x

[rosieglows]

Hi Lorraine

It has been a total game changer for me! 6 months ago, I was struggling to walk, suffering hugely with fatigue - tried numerous meds but none helped. I am now swimming 3 miles a week, having PT sessions at the gym and feel alive. No ongoing side effects but low immunity has caused me to have a couple of tricky infections. Am more careful now to protect myself and I always get my vaccination. I hope your experience is as positive as mine!

[Lorraine2460 in reply to rosieglows]

rosieglows thank you for your inspirational reply! This and the other replies have got me in the right frame of mind to be really hopefully that I will get some sort of ‘normal’ life back. Bring on the Game Changer! Thanks again and all the best. x

[aliplayspiano]

I’ve been on tocilizumab since 2018. It has made a big difference to me. The only side effect I have is it sends my white cell count/ neutrophils down low. Because of this I only inject it fortnightly. I have had a few infections while I’ve been on it but only one serious one.

[Lorraine2460 in reply to aliplayspiano]

Thanks very much for your response aliplayspiano and really great to hear toc has been a big success for you. I’m really hopeful that I’ll be able to report back similar! Take care. x

[SheilaT3271]

Hi Lorraine

I’ve been on Kevzara (a bio similar based on Sarilimab) since last Oct. It’s the 3rd biologic I’ve tried and the only one to take me into remission zone. I’d requested to go on it because others on here had also indicated it had helped resolve a persistent bakers cyst which it has. The only side affect I’m aware of is initially I experienced quite a lot of mouth ulcers. This has settled down now although I still get one or two a month, based on a fortnightly injection. Good luck with yours.

[Lorraine2460 in reply to SheilaT3271]

Thanks very much for your response and fantastic to hear you’re in the remission zone! Similar to you, I had quite a lot of mouth ulcers when I was on methotrexate so perhaps I might expect them to return with toc - we’ll see. Thanks again and keep up the great work! x

[allanah]

Hi Lorraine , I haven't been on for a while but when I saw your post I had to reply.I went from 8 years ago being 8 stone overweight , in severe pain, severe shed loads of pain relief needed, obviously fed up , diabetic and very ill

...to starting TCZ drips with Leflonamide tablets and steroid tablets.

I'm now 8 stone lighter, walking ( occasional crutches depending on the day) less pain meds , reversed diabetes because of these wonderful drugs and an amazing rheumatologist.

It's a life changing drug, I've had no side effects although the injections for me personally worked less well than infusions. I have a drip one hour per month.

So far it's lasted me 8 years, signs it might be wearing off recently but they are monitoring me.

So good luck , I'm sure it will go well xx

[Lorraine2460 in reply to allanah]

Allan what an inspiration reply. Thank you very much. It sounds like you’ve been on a very tough journey but you’ve done fantastically well and I do hope this continues for you. I’ve definitely taken a lot of very positive strength from yours and the other responses to my post. Thank you for taking the time to respond and all the very best to you. x

[allanah in reply to Lorraine2460]

Good luck lovely . Fingers crossed x

[EnglishRose63]

Hi Lorraine2460.. My next rheumatology appointment is next Tuesday and they're saying tocilizumab is my next drug to try. I've been on so many different ones over the years so I'm hoping this one will help.

I haven't really read up on it to be honest, is it an injection and not a pill? 💜

[Lorraine2460]

Hi EnglishRose63, thanks for reaching out. Yes, it is an injection. Pretty much the same routine as I did for my methotrexate. I had my first one on Monday. All very straightforward and no immediate adverse reaction. I’m really hoping that this works as I’m in a big bad RA hole at the moment. Good luck on Tuesday and all the best. x

[EnglishRose63]

Thanks Lorraine. I was injecting methotrexate a few years ago, it didn't work for me.

I was told tocilizumab is done by infusion at the hospital rheumy clinic as well (not sure how true it is) but I'd rather do it myself.

I'm glad your first one went well so far. Fingers crossed for a good outcome. 💜