Tocilizumab injections

Happy new year to everyone. Does anyone out there have tocilizumab injections? I have had tocs monthly infusion for over 2 years & i have got on really well with it. At my last session the nurse asked if i had been to rhumy clinic lately, i said i was due any time now. I asked why then she told me i will probably be going onto weekly injections. Just wondered if anyone was doing this & if there were any side effects having it weekly. Xx Alison

19 Replies

oldestnewest
  • Hi. I'm waiting to start the infusion of this. I have been told it's not available in an injection in my area yet. Would be interested in hearing how you find the injections when you get them & if you find a difference between infusion & injection.

    Rachel x

  • Hi Rachel. I hadn't heard of them until 2 weeks ago. As long as i can do them at home i will give them a go. If i have got to go to hospital every week i shall ask if i can carry on with my monthly infusion because of the bus fare. I have got on so well with the infusion, bit tired for 24hrs & sometimes a headache. I drink plenty of water the day before & during my treatment. Good luck & let me know also how you get on. Not sure when i shall be starting them waiting for an appointment for rhuematoid clinic. Xx Alison

  • I have rang my nurse to enquire if I can over to injections today....still waiting for reply.

  • Hi Ozzy. I am a bit worried about it as i couldnt toralate methatrexate. Think i shall email my rheumy nurse to ask her if its true & when can she see me. Xx Alison

  • I don't have methotrexate either by tablet or injection because of bad reactions. I have had injections of humaria before which apart from reaction at injection site they were fine. My last infusion my vein collapsed and they had to stop it as my veins are quite small, so injections for me would be better.

  • I don't have methotrexate either by tablet or injection because of bad reactions. I have had injections of humaria before which apart from reaction at injection site they were fine. My last infusion my vein collapsed and they had to stop it as my veins are quite small, so injections for me would be better.

  • Just had call from nurse who told me that they are going to try and put as many people as possible onto the injections

  • :-) that sounds good. I shall know more when i go in 2 weeks. I shall let you know how i get on xx Alison

  • Hi Alison, I am reading many blogs about the injections, I'm due to have my third infusion tomorrow, I was told injections would be available in Rochdale before I go abroad in May, but the story keeps changing. Let us know how you go. Sharon x

  • Hi Sharon. I am at hospital Monday for my infusion i shall ask more about it when i go. I will let you know what they say. Xx Alison

  • Hi Shazbat, just read your message, I go abroad every year to see family, up to now I have been on Enbrel pens weekly and traveled without any problems. I am hoping to start Tocil soon by injection not infusion. Someone mentioned on here that with Enbrel you need to leave out for 30 mins and comes to room temperature where as with Tocil you have to use with in 5 mins. I wonder how it will be to travel abroad with this medications? I had no problems even on a 8 hour flight. I was given specific instructions by HAH along with a letter from them in regards to traveling and customs. I saw my Rheumy nurse on Friday but forgot to ask the question. I was given a number to call for advice by one of the other nurses so I will give them a call next week.

    I am in the Manchester area and will start on injections, I was told originally, that I would have to start on infusions, I prefer to have injections rather than making trips to hospital and spending an hour there to have infusions. I had no problem with the Enbrel pens so it should be ok with the injections. Thank you, hope it works for you, I have had positive feedback on here for Tocil, I can't wait to get started, I still have to have another blood test for TB next week and if that is ok along with the last blood test and x-ray I am hoping it won't take long. I wish you well and hope it works for you too. x

  • Thank you Alison x

  • Hi Sharon hope you are well. I had my infusion Monday, asked about injections & they are still not sure when :-( . I'll keep intouch xx Alison

  • I've just started tocilizumab last week (after 4 years of rituximab, sadly no longer working for me) - put straight onto the injections which is great as I've now got back 4 days per year spent at hospital having rituximab. Syringes say to take out of fridge 30 mins before so not old when inject - very easy to use, with clever spring thing that covers the needle once you take it out of the skin. Easier than the Humira injections I had before rituximab, and much easier than my methotrexate which comes in a standard syringe which has to have the cap removed & a needle put on - sometime I don't quite tighten it properly then waste some of my mtx before I notice...... :( So good luck, and hope you find it as easy as I do

  • Thank you Sally. Its still not an opption yet at my hospital but soon as it is i shall try it. Let me know if you notice any side affects please xx Alison

  • Hi, would be interested to know if anyone else has started Tocilizumab on infusions, which I was on for a year (4-weekly), and then moved to weekly home injections, which I've now been on for 10 weeks. I was doing quite well on the infusions, and although it took about 5 hours or more to get to the hospital, have the infusion and then home, I didn't mind. Now I'm getting more pain from my hands, feet & knees, and wondered if this is just me, or the injections not working as well?

  • O no! Ive got rhumy clinic thursday & ive got a feeling they are going to talk about injections to me. Like everything else everyone reacts different. Hope you can sort things out xx Alison

  • Didn't mean to worry anyone - as you say, I'm sure everyone reacts differently, and it may well be that I'm just having a flare up. How long have you been on the infusions, and have they helped you a lot?

  • Sorry, just re-read your original post, so you've already answered this!

You may also like...