Tocilizumab injections

charleeh

Hi all,

I have heard that the IV Tocilizumab drug will be available in injection pens that you can keep in the fridge and weekly do at home yourself.

While I welcome the idea of not having to have IV monthly at the hospital I am concerned about the following:

a 'pen' rather than a syringe. I found humira pens very painful, i prefer to have an injection as I think its less painful however, I understand that when in flare up we can't always use a syringe.

The swap over period....
this new medication will be concentrated, so will this be a weekly injection. Do you think it might cause a mini flare while having a swap over?? My nurse says no but I am doubtful!

I hear it will be a while before the change is implemented....

Any opinions would be appreciated.... and has anyone heard anything else??

Best wishes,
Charleeh x

stickywicket

I don't do tocilizumab or injections or pens but just bumping this up in the hope that someone who does will see it. I don't think very many on here take it. I wish you a smooth turnover as/when/if it happens

scattered

Tocilizumab is going to be available as a sub-cutaneuous injection - and I'm very excited about it!

I'm going to be the first person in my Rheumatology department to be on the injections: nothing like being a guinea pig! They are still agreeing distribution terms and conditions with Bupa, as well as sorting out contracts for training new users etc. My Rhuematology pharmacy dept are hopeful that this will all be sorted by the New Year, then it's just a case of getting the CCG to agree to the swap over.

I asked to swapped the minute NICE approved the injections in August, but I don't think it is going to be mandatory. My RD has said that if the injections prove not to be as effective as the infusions he will swap me back. They hope that the injection will be more effective because you will be receiving a constant, sustained dose every week, rather than a massive dose that tapers off over 4 weeks. My RD did say that usually one method suits people better than the other.

I can't wait!

premierscfc04

After reading this thread last week I went to the Rheumatology Doctors appointment yesterday and asked if it will be available soon? I too find that the idea of weekly home injections are far more preferable than continually focussing on the next treatment date, when the post infusion tapering begins.

Unfortunately I saw a new doctor who could not give me any help/information during the consultation.

I will look forward to any updates in the near future..

charleeh

I hope to hear more on the topic soon. I have been asked to be one of the first to change over.

I'll keep everyone posted as and when I hear anything

Thanks for the replies,

Best wishes
Charleeh x

stickywicket

You will be a pioneer, blazing a trail for the rest of us

Good luck, charleeh. There will be quite a few on here watching your progress with interest.

Tia1723

charleeh wrote:

Hi all,

The swap over period....
this new medication will be concentrated, so will this be a weekly injection. Do you think it might cause a mini flare while having a swap over?? My nurse says no but I am doubtful!

here is the link which you and other forum member may find interesting:
http://www.actemra.com/Taking-ACTEMRA/how_actemra_is_taken.html

They Says:

"For patients starting on 1 prefilled syringe every 2 weeks, you and your rheumatologist may decide to change your dose to 1 prefilled syringe every week if you aren’t getting the results you need. Your doctor may choose to increase, lower, or hold your dose based on other factors, including changes in your blood tests."

They have a video and in depth information too about this new formulation.
Have a look!! I hope you find it interesting.

Love,Tia.

Newgirl

Hi everyone-
I must admit, I feel I don't know half as much as you all about RA as I was only a young teen when diagnosed and it's only been 8 years. I feel I must have been naive and not taken everything in!
Yesterday I had my second infusion of TOcilizumab.
During my first infusion, I was told about the plan for home injections and that I should ask have them.
I tried to explain to the nurse that I really didn't get on with injecting myself (meth and humira) but she assumed it was the needle problem. It's so difficult for me to explain. I don't mind needles as Al in fact- I will watch blood tests etc, no problem. The problem is- I got it into my head that as soon as I inject, I will be sick. And I was. I'm well aware it wasn't the medication working that quickly and it was all in my mind. But even to this day I struggle to work it out. It really upsets me obviously and unlike all of you guys, I seem to be dreading these injections! The joys of RA!
Thanks for listening guys! Hope all are well.

Sam

stickywicket

I think we take things in bit by bit and teenagers aren't usually fanatically interested in illness and disease even when it is their own I know I wasn't. I just wanted to get on with things.

I've never had to inject myself. I think my problems would be purely physical (ie rubbish hands) but who knows until it comes to it?

You seem to have a very clear idea of your problem and are facing it square on which has to be good. I expect the nurse has seen many people who are needle phobic but not many who simply throw up.

All I can say is that, in your situation, I'd be trying to work out why it happens and how to prevent it. Sometimes, after an initial bad reaction to things, we can start to expect the same again and so, to an extent, cause it ourselves. Can you do it on an empty stomach, as that would, presumably, make vomiting less likely? Can you tell yourself “OK. I'm going to inject, then I'll probably throw up, then all will be well?” Or, maybe your GP could help?

dorcas

Hello everyone!
It's been a while since I've posted... But I've popped by now and again to see what's been happening.
Thought I'd answer this post as I've been on the sub cut injections of tocilizumab since August 14. The transfer was pretty straightforward with my rheumatologist arranging for a BUPA nurse to make a home visit to go over the pen injection procedure (which is very different from metoject injections which I already do) and provide me with all the info on storing / using the pens. I started on weekly injections of 110mg and found using the pens a bit fidly at first but soon got used to them
BUPA handle delivery of the pens which come in a box of four and which must be refrigerated at 6 degrees. When injecting, you have to take the pen out of the fridge for no longer than 30 mins, and once the top is taken off the pen inject within 5 mins or risk the tocilizumab crystallizing and being of no use. Sounds complicated but honestly you soon get used to it!
Unfortunately for me the sub cut injections weren't successful and I've had quite a bad flare up of my psa, so much so that I'm restarting the tocil infusions again next week. I'm hoping that I'll once again stabilise on the higher infusion monthly dose of 616mg.
I do hope that other folks find the sub cut injections work for them! Definitely worth trying and not difficult to manage once you get started. X
Best wishes to everyone!

barbara12

Hello Dorcas its lovely to see your name on the forum,but sorry the injections haven't worked for you...how are your new wrist going or should I not ask..good luck with the infusions..and I hope you can come on and let us know how you are doing xx