Tocilizumab: Hi anyone on toc how are people... - NRAS

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Tocilizumab

Vonnie10 profile image
12 Replies

Hi anyone on toc how are people managing with the shortage of it.. are you delaying your weekly injection ? I’m 2 days over and struggling .. just like to know how others are managing .. I’ve had the text and letter to say short supply.. can’t get through to my nurses to speak about it but will try agin. Monday. .

Hope everyone is ok.

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Vonnie10 profile image
Vonnie10
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12 Replies
Brushwork profile image
Brushwork

I haven’t adjusted mine at all. Two reasons, firstly my letter said there is a possibility there will be a shortage, possibility is not a certainty, secondly my letter said it might result in one pack of 4 doses being delivered at a time and there being more deliveries, rather than the current 8 doses delivered currently.

I’m not too worried, because the biological nurse didn’t mention it when I spoke with her yesterday. I’m sure she would have if the department were seriously worried.

sylvi profile image
sylvi

As i am not on any biologicals i don't have a problem, but i am sending you a hug. xxx

Vonnie10 profile image
Vonnie10 in reply tosylvi

I hope your OK sylvi I seen in here you went through a bad time hope your in the mend and at the end of the trauma. If its possible.. take care x

sylvi profile image
sylvi in reply toVonnie10

I am still in recovery, but i am getting there thank you for asking darling. xxx

rustyjoints profile image
rustyjoints

I also had the text and letter but so far I've not had any problems with getting my Toci and my next scheduled delivery has been confirmed for Tuesday which is when I would have expected it. So I haven't adjusted my weekly injections and will just carry on with my injections as normal unless advised otherwise by my Rheumy Team.

Hope that helps.

Vonnie10 profile image
Vonnie10

Thanks girls all good news I will take mine today then hope yous are all doing well...my joints will be so happy 😊

Sheila_G profile image
Sheila_G

It is a double edged sword. Obviously the reason for the shortage is that it is one of the drugs being used to help in the recovery from covid but that doesn't help your situation. I hope you get it soon and having it late doesn't affect your condition.

Badger22 profile image
Badger22

I had a weeks delay and had run out . The delivery came but was only for a month as opposed to two.

Swimming20 profile image
Swimming20

I am on Tocilizumab but had to come of it for 2wks re blood tests..in meantime gave tested positive for covid ..but nurse told me go back on it when l get a negative test done ..am suffering for it 😪

Maggsie profile image
Maggsie

I'm not experiencing any delays in Derby. Ordered on 17th, being delivered tomorrow, even though I'm on fortnightly injections whilst trying to control the side effects and wasn't expecting delivery until 6th Sept.

Ozzy profile image
Ozzy

I went a week overdue earlier this year due to delivery problem, I was so tired by that time I would not like to repeat it! I had the text/letter but I have not been told to increase the time between injections so I am still doing them weekly. I had a delivery last week and I received 8 injections as per normal.

Vonnie10 profile image
Vonnie10

Thansk again lovely people my minds at ease knowing your all been sorted xx

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