Tocilzumab infusion: Hi, hope everyone is feeling as... - NRAS

28,046 members32,771 posts

Tocilzumab infusion


Hi, hope everyone is feeling as pain free as possible.

I received a call today from my rhuemy clinic to let me know I have my next infusion on Tuesday 3rd. It will be my 2nd since I returned from Canada. I was advised from the nurse that they are trying to get everyone on injections so I am goingto ask my biologics nurse on Thursday if I can start on injections asap. This will stop further problems with staffing issues if the nurse goes off sick again, plus we can save time having to make trips to the hospital.

Wish me luck, the last infusion didn't work as well as the first one I had back in June of this year.

Take care everyone, Sue x

5 Replies

Hi Sue it's brilliant to see that you are finally getting the meds. I love the injections they are a bit strange at first as there is a spring at the head of the injection. But really easy and convenient. However just so you know when they first delivered mine they were surprised it was 3 months. They told me most were monthly deliveries, no good if your going abroad fortunately mine agreed to 3 month deliveries, so check it out just in case your going to Canada again. And as usual absolutely no problems at security didn't even ask for the letter. Hope everything goes well.

Take care Shazbat

Hi Shazbat, thank you for your response. I will need 3 months also as I am going back to Canada before Christmas on an open flight. It will be 18 years since I spent the holidays in Canada. I am not sure if I will be able to get 3 months supply. I will have a chat with my rhuemy nurse tomorrow.

This is my first appt with her since I returned as she was sick when it was my last appointment at the beginning of the month.

I'm not sure how long it will take to arrange for injections as I fly on the 22nd December.

I am so glad you are doing well on the injections.

I am looking forward to seeing my family again. They all want me to go back permanently but I don't know how the very cold weather will effect my RD.

I will let you know how I get on with asking for the injections. It must be easier for everyone concerned.

Chat soon, take care, Sue xx

Hi Sue you can insist on 3 months I did and I got them. Also they need to get it sorted now, the biggest delay was setting up the contract with BUPA for the deliveries that took 4 weeks and that was with me bullying them. Use the fact that you have already been messed about so you now want them to step up, give them the date of your flight tell them you need them before then. My authority was actuall great at getting things moving but only after I officially complained which is not something I wanted to do but you know the chaos.

We come home in 2 weeks I have to say we have no central heating here and it's got quite cold early so I am suffering a bit.


Hi again, thanks for the info, will do.

Sorry you are suffering a bit. I was feeling so much better whilst in Canada with +30 degrees and humid weather, it can be -30 in the winter though which is one of the reasons I left it open. I did chat with some people on here and live in Canada who suffer with the heat and humid weather, but I have no idea how they deal with the very cold weather. It is much drier unlike the UK which is damp.

I will have to see how it goes. I didn't like driving over there in the winter when we had freezing rain.

It is like driving on an ice rink.

I haven't done driven over there for many years and I would have to reapply for my driving licence if I want to carry on driving.

Take care Shazbat, xx Sue

Hi Shazbat, I saw my Rhuemy nurse this morning and requested the injections for when I go away again. I was told my Consultant will only agree to monthly supply of Tocli, the most is 8 weeks and she will need to discuss my reasons next Week Thursday when he returns.She did sound very hopeful and promised to do her best to get him to agree to the 8 weeks. I will have another infusion at the beginning of December and then wait a month before I could start the injections if he agrees. It is the policy of my clinic that 8 is maximum and was very surprised you managed to get 3 months supply through Bupa. It will be Bupa who are to deliver my injections. I will see what happens.

Take care, enjoy your last 2 weeks.

Sue xx

You may also like...