Self injection query: Can anyone who is... - Vasculitis UK

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Self injection query

Riff1954 profile image
9 Replies

Can anyone who is currently on Mepolizumab or Benralizumab who are self-administering help? My wife is on Benra and has to attend the local hospital every other month to be handed the self injection pen by a nurse to administer the dose herself. She has asked repeatedly if the ‘pens’ could be sent to our home or she could collect them from a pharmacy but the requests have been denied. The ‘reason’ given is that there is no protocol in place to dispose of the used injectors. The hospital is ‘riddled’ with covid so it makes no sense to us to put my wife at increased risk by requiring her to go there.

How did you get round this obstacle?

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Riff1954 profile image
Riff1954
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9 Replies
AmyS1 profile image
AmyS1

NICE GUIDANCE says you should do it at home. My hospital has been tricky. Your GP can prescribe a sharps box which can be taken to a chemist or collected by the council! You need to fight your cause it is v hard.

PMRpro profile image
PMRpro

So how do they deal with their patients on tocilizumab (weekly home injections), epipens and diabetics?

Riff1954 profile image
Riff1954 in reply toPMRpro

Good point. I think the issue is that the assigned nurse is stubborn and really can’t be bothered to do any more than the minimum. Thanks for the link to the sharps box provision - that’s one sticking point sorted

PMRpro profile image
PMRpro in reply toRiff1954

Then high time for a complaint - via PALS if not somewhere more effective like the official complaints procedure. But the place to start seems to be the GP and the local pharmacy/council, whoever deals with sharps where you live. There are millions of home self injectors in the UK - it isn't a particularly unusual need.

PMRpro profile image
PMRpro

This

nhs.uk/common-health-questi...

is the general instructions for sharps disposal. People on tocilizumab have the self-injectors delivered to their homes and picked up when used - they are weekly self-injections. Patients on weekly methotrexate injections will also use the same system. I suspect your hospital is being lazy ...

AndrewT profile image
AndrewT

Dear Riff1954,

I can't 'Speak' for your Wife's Drugs exactly but I was on EPO(tin) for some years, when I was pre-dialysis. I was 'Simply' supplied BOTH the Injections AND the 'Sharps' bin- taken into a Pharmacy, or my Consultant when full. I had this arrangement for some years.

I would recommend simply speaking to your Consultant, or your GP.

AndrewT

Angels54 profile image
Angels54

Can’t understand that as I inject with Abatacept wkly , some elderly have to inject themselves .

JGM1 profile image
JGM1

I have been on the Benra/Mepo clinical trial for 12 months and have now been on open label Benralizumab for 3 months . On my last hospital visit I was told I can start administering from home after the next monthly visit as there is a protocol in place . They just have to go through the instructions first and then I can self inject monthly ( but will still have phone call consultation on the day) and just attend every 3 months for face to face treatment. They also said they could instruct someone else to administer in the arm if I didn’t want to do it in my stomach or leg so it is definitely possible. They were also going to issue a sharps box but I have one already for the methotrexate I already take by self injector pen.

PMRpro profile image
PMRpro

healthunlocked.com/pmrgcauk...

I generated a discussion with slf-injectors on my home site which you may find of interest.

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