Advice please : Hi, been offered my usual Tocilizumab... - NRAS

NRAS

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Advice please

tamnwill
tamnwill

Hi, been offered my usual Tocilizumab by self administering pen subcutaneously instead of my monthly ones at hospital due to covid. Anyone have experience of this form of delivery please? I’ve been on humira before and used to inject but wondered if this was the same, only this would be every week 😬😓 - it’s either that or baricitinib tablets that’s been offered.

19 Replies
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Well that weird, I was told we were nit allowed to change from infusion in our area !!

I used them , easy to use , unfortunately for me even though you actually with the pens get the same amount if drug it wasnt as effective for me.

But dont let me put you off, my friend changed and for her its brilliant x

tamnwill
tamnwill in reply to allanah

I was told the same last month and then last Thursday my consultant rang me at home and said they were trying to minimise the amount of ‘at risk’ patients coming in to have their infusions.

allanah
allanah in reply to tamnwill

I'm going in first next monday as my wbc too low but he wants me to have it anyway , well he knows what hes doing normally.

tamnwill
tamnwill in reply to allanah

I mainly look at my neutrophils tbh and if they are too low then they won’t administer.

Its a lot less painful than humira and I find that I am more stable on the injections than I was on the infusion. You can either have a syringe or now they have an inject able pen which ever you prefer

tamnwill
tamnwill in reply to Ozzy

That’s good to hear - which method do you use please?

Ozzy
Ozzy in reply to tamnwill

I use a syringe but it maybe because I’m more used to it, I have tried the pens but found them hard to hold but my fingers are not great at gripping. The pens are the most recent method

I started using tocilizumab last week by sub cutaneous injection, it is very easy to use. Similar to methotrexate and benepali injections.

I swapped from infusions to injections because of persistent neutropenia. To be honest find the injections a lot kinder to myself, less sides effects, better WCC etc with no less effect on my joints

tamnwill
tamnwill in reply to mrsb

May I ask what WCC is please?

tamnwill
tamnwill in reply to tamnwill

Or do you mean white blood count?

happytulip
happytulip in reply to tamnwill

I expect it's white cell count.

mrsb
mrsb in reply to happytulip

Yes its white cell count

I self “jab” and it’s a breeze just need to do it once and then get used to it. You depress the needle vs pushing a button. It will be new at first, but it’s so great not having to go to the hospital! My one recommendation is go about 20 times slower depressing the needle as you think you need to. If you feel any kind of a slight sting at all, just stop, pause, and then start depressing again. It’s absolutely no problem.

I have been self injecting Tocilizumab for six years. No issues at all.

For me, injecting into thigh very painful. Into tummy pain free. Pinch a bit of fat and push down. It’s a doddle.

hi Tamnwill hope your keeping safe and well. I’ve been using the pens for ages now and it’s no bother at all. Get 2 months delivered at a time that’s 8 pens and I find it fine . Just push button on top of pen and hey ho. I take mine outta fridge about 1 hr to warm up a bit and it doesn’t hurt or sting. I found the Enbrel used to sting like crazy, you’ll be fine. Give it a go. I find it’s working for me great. Saves the trIal of having to go to hosp . Keep safe and well 😃

I inject with no problems but never heard of the pens and i get 3 months at a time delivered

I agree with what's been said above. Changed from injection to a pen last year and can manage this very easily myself. My husband had to do the injections for me as I didn't have strength in my fingers to press the syringe - this is much easier for me to operate.

Like others I take it out of the fridge at least an hour beforehand and I also put into my tummy - no pain nor irritation. It's the best I've had to date - for over 12 years on biologics.

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