New to biologics: I'm about to take delivery of my... - NRAS

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New to biologics

Bluepegasus
Bluepegasus

I'm about to take delivery of my first dose of tocilizumab, it's also my first biologic. Nothing else has worked for me so I'm feeling a bit apprehensive. Could anyone tell me about their experiences with this drug please? Reactions are different for everyone, I know, but I'd just love some reassurance or encouragement if possible. Thanks so much in advance.

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Fantastic changed my life

Ah, that's very good to hear, thanks so much Allanah.

allanah
allanah in reply to Bluepegasus

Go for it, I was wheelchair bound and 8 stone heavier, I'm now moving with occasional crutches or scooter if long distances , lighter, non diabetic and occasional flares only. I hope you get the same result xx

That's a fantastic success story Allanah, really fantastic that you've had such a life change with it. Thank so much for posting, I really appreciate it. xx

Hiya , I’ve nothing but positivity about this biologic I’ve had R.A. 7 years , I’m on methotrexate and tried 2 biologics but sadly they failed after time . Worst flare ever from Oct last year to January literally unable to walk ( I’m just 50) started Toci after 2nd injection felt benefit by 4th back to walking my dog 2 miles a day and everything else I should be doing as a busy Mum .

It’s changed me and I really hope it does you 😊

Thank you claireyj, so glad it’s turned things around for you, that’s an amazing story. Thanks for taking the time to post, really appreciate it.

Hi I go for the infusions though I havent had one for sometime, I was worried about all the drugs going into me but you do feel better afterwards.

Bluepegasus
Bluepegasus in reply to madme1

Thank you madme1, feeling better would be great at the moment. I worry about all the drugs going in too but I don’t think there’s much alternative is there.

Being on mtx pills made me really sick then went on injections sickness went but didn’t do anything for my condition nothing whatsoever so moved on to biologics and honestly three days after my first injection I was able to walk again properly , the ra ruined me and my family’s life for two years my poor little girl had to watch me unable to walk cycle play with her went on a hol in my camper and it was the worst week I had I cried and cried because I couldn’t play with my daughter while other dads were running around , it really hurt me , But this med gave me my life back I hope u get relief like I did . All the best .

Best drug I’ve ever had in all the 23yrs of having RA with hardly any side effects, unfortunately after four years of infusions it became less effective and I had to change medication. Good luck hope it works well for you 🤗X

I started on toci 3 and half years ago. My wife crp was up at 159. Within 2 weeks crp was 80, 2 more weeks down to 19. 2 more weeks up to 78, e more weeks down to less than 0.2. Now cry stays between 0.2 and 2.0. I also started infusions at 600mg every 4 weeks, now I am maintaining at 200mg every 6 weeks. This drug is a total game changer. I was on all the dmards with no relief. Humira was horrible, Anakinra was daily injections, did for 49 days with no relief, started toci and everything got better in a hurry.

I cannot recommend this enough.

Scott

I have really bad ra, my consultant calls it unremitting. I had 4 biologics that didn't give much of a result or stopped working after a few weeks. Tocilizumab was life changing. It did take 3 months to work though but boy did it work. I've not been quite so good lately but as I'm going on a five mile walk with one friend shortly and have a zoom Pilates class later I can't be doing too badly. Also invest in a medigenix travel bag if you are on weekly injections and it does work. All the best.

Toci has been good for me, been having it a year now by infusion and don't take anything else. It did take a couple of months to really kick in so maybe don't be too impatient.

Fingers crossed for you

Wow, thank you so much everyone, I'm really grateful for all that input, it's brilliant that you've all had such a big turnaround with your RA, long may it continue and it's put me in a much more positive frame of mind. Thank you!

Nadine-NRAS
Nadine-NRASAdministrator

Wow, so great to see positive stories. Best of luck with it

I was diagnosed with RA xmas'18 and tomorrow I'll be having my 3rd infusion of Tocilizumab, after trying with the now "infamous" hydroxychloroquine, then MTX pills, then MTX jab, then LEF... along with 8 months of Prednisolone, several UTIs and even pyelonephritis. Tocilizumab is the only med I'm taking now, I do feel an improvement in my knees, neck and jaw but my left wrist is still very achy and I still wouldn't say it's life changing but, fingers cross, is still early to say... let's see.

Best of luck! 🤞😉

Bluepegasus
Bluepegasus in reply to Rokosaki

Your journey sounds almost identical to mine, down to the diagnosis date. Thanks so much for posting and for your good wishes, it's really helpful to hear other people's experiences of the same thing - really appreciate it. All the best.

iI have been on it for 7years and it has been the best one that i have as i have tried a few biologics and nothing worked for me so i hope it works well for you but has now stopped working so after lockdown it is onto a new one.Good luck

Bluepegasus
Bluepegasus in reply to beeckey

Thank you beeckey, that's very reassuring. I hope your next one works as well for you, all the best with it.

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