Tocilizumab

[kerpag]

Hi. I am starting tocilizumab via infusion next week. I've had lots of biologics without success including humira, enbrel and simponi. I'm hoping this will help as its my only remaining option at this time. However I wondered if anyone had any side effects as I'm having my first dose 4 days before I go on holiday?!

[Ali_H]

Sorry Kerpag I've no experience with this one but good luck with it.... Are you going anywhere special for your hols ( I was going to write 'are you going anywhere nice?' But then thought what a daft question like you would book somewhere unpleasant!!! )

Have a fab holiday

Ali

[kerpag in reply to Ali_H]

Thanks! Off to Florida. Always feel so well in the sunshine and heat x

[allanah in reply to kerpag]

Oh lucky lucky , wish I was going too!! Sneak me in your case!

Sorry I am the same, had Humira Enbrel remicade abatacept and hopefully starting Rituximab soon. So we can compare notes when u start! I think tho be careful with the sun use hats and screen obviously and drink bottled water. All the usual sensible stuff, take hand gel too xx and send photos!! Xx

[kerpag]

Can't wait! I did well on rituximab and managed to get off steroids, however "on paper" my DAS didn't improve enough so the CCG stopped the funding. Now been back on steroids for 4 years. Desperate to get off them before I get any fatter! 3 stone on in 4 years😔 hope it goes well for you.

[Ozzy]

I been on this since June with no problems. I got a headache the first time and someone suggest drinking more before hand and during the infusion, this worked for me. So apart from getting a bit bored during it, it only takes just over an hour from start to finish, I would recommend it. It has totally reduced my esr/crp to next to nothing.

[kerpag]

Thank you. Feeling positive about this!

[beeckey]

Hi Kerpag Been on lots of drugs humira enbrel rituximab which did not work for me but these work for others.I have been on tocilizumab for over 2 years best one that i have tried still have painful joints but that could be damage already done but i have heard of other people who have done better than me so hope you do well on it.Enjoy your holiday in the sun.I have not had any side effects at all on it tocilizumab

[Sailaway]

I had Tocilizumab and reacted, but it was only a rash which went with antihistamines and wouldn't have stopped me going on holiday. Sadly, I couldn't continue on it after that, but that one injection took my CRP and ESR down to zero for the first time since I was diagnosed. I hope you get the good reaction and an immediate drop in inflammation too, but not the rash with it.

Enjoy your holiday!