Restart of Tocilizumab : Been 10 weeks tomorrow since... - NRAS

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Restart of Tocilizumab

dwsurquhart
dwsurquhart

Been 10 weeks tomorrow since my last infusion. Rheumatologist said to postpone during the covid19 pandemic. I now have appt for Wednesday morning. My joints have been killing me for around 5 weeks now. I am still advised not to go the hospital lab for bloodwork, not sure what to make of that, going for infusion anyway. Just hoping it still works.

Has anyone else taken a break from toci, gone back to it, and find it does not work anymore?

I hope this is not the case.

I will let you all know the outcome in a couple weeks.

Cheers and stay safe

Scott

Vancouver Canada

7 Replies
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I hope it works for you Scott.

I've just started weekly sub cutaneous tocilizumab , 2 and jab due today.

Hi. Been on this drug for 3 years here in the UK. Self inject every week. 4 injections delivered every month. Well organised. A few flare ups but overall very impressed. Why don't you ask to be put on self administered injections to avoid the need to go to hospital?

My blood work is done at my local general practice and sent off to the hospital.

My infusion is done at my rheumatologist infusion clinic in his office. Only go to hospital lab for bloodwork. I am going to ask again to see if they have the capacity to take blood and send to lab.

My rheumy is the opposite for me. Wants me in hospital as the first patient monday for infusion , I missed one due to infection. He say there is research hes involved in that TCZ might be a helpful drug, possibly, maybe?! , if you get covid . I needed bloods too so it does feel more worrying but I trust him.

Hows Canada doing. !?

The advice here in the UK is to stay on your current regimen because having a flare reduces your immune response anyway, and it's better to be mobile and generally well if immunosuppressed than ill, creaky, in pain and immunosuppressed

The good news is, you can take holidays from toc - if you're ill and need to skip an infusion, or are due to have surgery you can miss 12 or more more weeks until it's totally gone from the system. So I hope your 10 weeks will be OK, and that you get some relief soon

I had my infusion yesterday. My wife tells me that it is the first night in 4 weeks that I did not toss and turn. I have woken up and feel rested for the first time in 4 weeks as well.

I drove by the hospital lab yesterday on my way to my infusion, there are signs up stating if you do not need to come please do not come in. My lab is in the hospital where the largest number of covid patients are.

My hips and shoulders do not hurt this morning which makes me a lot happier.

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