tocilizumab

[Flowers2020]

Hi, hope everyone is keeping well. I’ve just spoken to Rheumatologist and they are suggesting that I try tocilizumab injection. How affective have people found this drug and what kind of side effects have you experienced? How often do you take it? Always worried before starting something new but my arthritis has flared up again.

[allanah]

Life changing . I'm on infusions, sometimes get low white blood cells so miss one but amazing amazing !

[Biofreak]

I didn't do well on Tocilizumab but that is just me. You will find lots of people who do really well on it. If you put Tocilizumab in the search field you will find lots of people sharing their experience. I always think it's worth giving new medication a try because it might just be what you're waiting for. Good luck.

[Cookiecrumb]

Hi, this is my first time chatting on this site...have been living with RA for about 10 years. First few years, I was on Methotrexate and was pretty good but unfortunately, although it was great for my RA, the downside was that it caused a breathing prob. 3 years + later, they're still trying to find something that will help. Have tried Salazopyrin, hydroxycloroquine, long acting steroid injections, Benepali, Rituximab. Had to take oral steroids a few times last year in desperation. At beginning of March, was going to start Tocilizumab infusions but because of coronavirus, understandably was cancelled.

However, I'll be having my first infusion tomorrow morning...wahoo..I hope!!

So Flowers, will let you know how it goes. Although, I've got a bit of trepidation...I just want a bit of my normal life back

[springcross in reply to Cookiecrumb]

Hi Cookiecrumb. Welcome to the forum. I hope things go well and that you get on really good tomorrow. Good luck. x

[Cookiecrumb in reply to springcross]

Thanks very much Springcross Hopefully I'll come back with a new body! Tee blooming hee!

[springcross in reply to Cookiecrumb]

👍 x

[Mmrr in reply to Cookiecrumb]

Best wishes for tomorrow

[Flowers2020 in reply to Cookiecrumb]

Aww I wish you well for tomorrow! Really hope it works for you. I was also on methotrexate for many years but eventually caused me a lot of sickness and effected my liver so had to stop. Do you know what the difference is to having the tocilizumab as an infusion to having it as weekly injections? As they’ve suggested I have the injections.

[Hidden]

Best drug I’ve had in 23yrs. It gave me a quality of life that lasted four years before it started to wane and I had to try something new. I hope it serves you well and gives you long term pain relief. Stay well 🌈🌈🤗x

[Flowers2020 in reply to Hidden]

Thank you. How many years did it work for you? And did you have to take other drugs with it?

[Hidden in reply to Flowers2020]

It worked for four years and I took no other drugs with, it really was a fantastic drug for me personally, I hope it is for you. 🌈🌈🤗x

[Flowers2020]

Thank you. All the best

[Patsy-57]

Hi. I have been on tocilizumab infusions for about 4 years. It has worked for me. Occasional mouth ulcers otherwise fine. Best I have been in a long time.

Still have good days and bad as you would expect. It is scary starting new medication but just weigh up the pros and cons.

Patsy57

[weymouth321 in reply to Patsy-57]

Hi Patsy - 57 ,

Have you experienced any weight gain with Tocilizumab ?

[Patsy-57 in reply to weymouth321]

I have always struggled with my weight but haven’t noticed it being any worse on this.

[Kah4]

Life changing. Self inject once a week. I am able to live virtually a normal life. Monitored by my Rheumatologist by bi monthly blood tests and yearly consultation. Experiencing no side effects.

[Backchat57 in reply to Kah4]

That’s so good to hear ! I started self injecting two weeks ago and wondered how long before it made a difference ? Am feeling a little desperate’

[Kah4]

Initially I received toc through IV infusion as it was not available in injection format. Therefore it is difficult for me to say how quickly the injection might take to show effects. Hence when I switched to self inject I already had Toc in my system. Previous to starting Toc I was taking methotrexate and sulphasalizine. I felt so ill on this medication that my rheumatologist suggested we try Toc. It was fairly new at that time. It is now the only medication I take and it really has been a life changer. See if you can contact your Rheumatologist to see if they can give you some indication of how long before you might feel the effects of the Toc. Hopefully not too long.. Take care and really hope it works for you