Abatacept Infusions Update

[Otto11]

Hi everyone who responded to my last few posts regarding starting infusions. I had a call yesterday from Lloyds ( most likely because my Rheumy Nurse had sent them an e mail) to arrange a delivery of the infusion fluid & cannulas. I had expected a date for the infusion but the lady knew nothing about that. When she first spoke she said im ringing to arrange a delivery so I presumed it was to arrange the infusion. She didn't explain herself well at all. It was as if I was supposed to know the procedure. Anyway another step forward. They are being delivered next Tuesday but by then I will only have one injection left. I somehow have a feeling I'm going to have to chase this again

[Neonkittie17]

I think we’re going to have to chase all the way whatever form of Abatacept we’re going to be on. I had a box with 2 pens delivered on Tuesday with a standard letter saying only 2 pens allowed atm. I was supposed to get pre-filled syringes this time but Lloyds told me last week they were still awaiting the script to authorise this from rheumatology, but I haven’t been able to get through to Lloyds yet by phone. It’s been approved I was told last week by the rheumy sec so not sure. Whether someone else forgot to send it I don’t know re my change to syringes.

Doesn’t the Abatacept med/powder get put into the purified/sterile water etc to make the med when the nurse arrives? I’m sure I read this on Lloyds FAQs on their website. I just don’t know 🤷‍♀️ and hope it all goes well and you hear from the home visit nurse soon.

[Neonkittie17]

Just to add .. I definitely read on Lloyds website that delivery of the med and infusion cannula etc., and the nurse visit are two separate bookings/happenings.

If the nurse was ill or had an emergency or couldn’t attend they’d be stuck with your med and likely unable to give it to another visiting nurse to do it for you. Also, some patients could cancel so the nurse has to control her diary rather than Lloyds booking it, so it’s got to be two separate bookings re med delivery and nurse visit. That’s what I read. Have a look on the Lloyds website as there’s a huge section on the Abatacept situation. I linked it before about a week ago, but I m rushing to do something atm so can’t. x

[Otto11 in reply to Neonkittie17]

Thanks. I will look on their website. I didn’t realise. I’m a right numpty!

[Neonkittie17 in reply to Otto11]

No you’re not. You’ve had a lot of stress with the Abatacept business .. we all have. I’ve got my headache back again. 😐 There's such a lot of info on the Lloyds website and I hope it is useful to you. I shall keep trying Lloyds this week to confirm re my own situation this week.

I’ve found the Lloyds link I posted before re the Abatacept pens shortage;

lpclinicalhomecare.co.uk/or...

[Otto11 in reply to Neonkittie17]

Thank you so much. I looked last night & found lots of info some contradictory but never mind. I’ll wait for the delivery next week & will ring after that if not heard anything. Hope you get yours sorted out too. x

[Neonkittie17 in reply to Otto11]

Yes some of it is contradictory from what is said when you phone and the website but the procedures part I would think is correct online.

[Neonkittie17]

This is the Lloyds answer re med delivery and nurse.

Green Text White Background

[Otto11 in reply to Neonkittie17]

Thanks very much x

[nanny_bee71]

Baby steps inching along the path - it all takes so long to sort - roll on 20 August when I start mine. I've had to give myself a kick up the butt so I can keep moving - sometimes with a little help from OH - managed to walk for half hour with the dog yesterday. The pain I can deal with but the stiffness is a nightmare. Hey ho - at least the sun is shining today

[Otto11 in reply to nanny_bee71]

Well done for keeping going. I’m pleased the sun is shining there. It’s miserable here again. It will be August soon.

[Artfanatic]

Hi Otto11, I too got the call from my Rheumy nurse telling me of the Abatacept shortage & that I would be getting an infusion at home instead. However I had a delivery already booked with my new supply delivery team called Healthnet. When I rang them to see if I would still be getting my delivery they didn't know anything about the shortage & seemed surprised & said they would pass it on!? They said I might only get 2 epipens then if a shortage. My delivery was confirmed by email & I wondered if it would actually come. Hey presto my 4 Epipens arrived so I'm thrilled! As I take it fortnightly I'm OK until 1st week of September as I already had 1 left before the delivery. My Rheumy nurse said the shortage might only be until end of August? So lets hope its all back to normal before I run out? But the nurse also said the infusion can take 4-5hours so thats a whole day sitting at home plugged into the infusion drip & does the nurse stay with you all that time??? Sounds really limiting? I'd rather sit at the hospital having it if its that long with a total stranger in you're house??? Does anyone know how long it takes or had one now?

[Otto11 in reply to Artfanatic]

Thanks. I believe from what others have said that the infusion last about 30 mins. Then they will wait 30 mins after I think. I would prefer to be at hospital too.

[Summerrain14 in reply to Otto11]

I had my first infusion just over two weeks ago, it took 30 mins for the infusion and I had to stay for an hour after the infusion to ensure no reaction to the infusion. All went really smoothly and so grateful to my rheumy team for sorting it so quickly for me to have at my local hospital. x

[Summerrain14]

I really do hope you have a date booked soon for your first infusion. It has been a really long wait for you and hoping you don’t run out of medication. Do keep us posted won’t you? x

[Otto11 in reply to Summerrain14]

Thanks I will x

[Otto11 in reply to Summerrain14]

Just letting you know I had my infusion yesterday & all went well. The nurse was lovely although a tad disorganised. Got my next 2 booked in too so all good x