Abatacept Shortage?

[Gillybob19]

Hi, I've been on abatacept since last year as a subcutaneous injection weekly at home. I've had a message from Lloyds Homecare who provide it saying that the manufacturer has let them know of an imminent shortage. Lloyds are going to provide it by infusion at home instead. I'm not entirely comfortable with that. Am I being over cautious? I've never had an infusion. TIA

[AgedCrone]

Yes I think you probably are being a bit over cautious. A nurse will surely be sent to do an infusion..,I very much doubt you will be expected to manage that yourself.

So don’t worry…infusions are not a problem …I have been having infusions of Rituximab since 2016. ..& have never had ny worries at all.

Call your rheumy nurses & ask them how it will work…that will put your mind at ease.

[Gillybob19 in reply to AgedCrone]

Thanks AC. Yes, they have said a registered nurse will do it. I just don't know how well educated they will be on any issues that may crop up. I also have severe asthma so that is where most of my worry is. Apart from that one of my children is autistic and extremely medical equipment phobic! Hopefully it will be all over very quickly.

[AgedCrone in reply to Gillybob19]

Can you try to get a friend in to take the little ones attention whist the cannula is inserted? After that a scarf over your arm will keep everything thing clinical out of site. If you can get in touch with the nurse who is going to do it, & make her aware of your asthma…I’m sure she will put your mind at ease.

I would think it will only take a short time.. Let’s hope the interruption in supply. is very short lived.

Good Luck with it.

[Neonkittie17]

There’s an NHS document (link below) re the current shortage of the Clickject Orencia pens but it says a syringe will be offered as an alternative, so seems a lot more trouble to come up the house or go to a hospital to do it. 🤷‍♀️ Also says the pens should be back available from late August.

I do know that Abatacept/Orencia takes 30 mins to do the infusion as I’ve known people on them who’ve gone in and out quickly for their infusion when I’ve been there there all day, when I had Rituximab. I’ll ask Lloyds (my med delivery company) later today, as about to phone up to make my next time for an Abatacept delivery.

Edit: Spoke to Lloyds and they say there will be patients asked to move to pre-filled syringes which I don’t mind but what does concern me is if sub-cut patients move to a few monthly infusions of Abatacept, return to their at home sub-cut method and the sub-cut then has much less efficacy after the infusions being more powerful? 😑

cas.mhra.gov.uk/ViewandAckn...

[Gillybob19 in reply to Neonkittie17]

I'd prefer the prefilled syringes if they're available. I might ask Lloyds in my area. Thanks NK

[Neonkittie17 in reply to Gillybob19]

I had a call earlier from one of the pharmacists at my hospital who said they’d be speaking to my rheumatologist and will ask her to recommend pre-filled syringes but it’s not as easy as that. There is only the capacity to give 15% of Abatacept clickpen patients in the UK the pre filled syringes and there is a cohort of juvenile patients to be prioritised but she’ll do all she can. Hope you can find your best solution to your situation too. Lloyds themselves can’t decide/authorise anything themselves as it has to be the Rheumy/hospital Pharmacist, who told me this.

[nanny_bee71]

I am still waiting to start on abatacept after being prescribed back in April. After phoning rheumy helpline was told there should be no delay and said they would contact sciensus to sort it. and if I needed pain relief to contact my GP (only offered cocodamol). 3 weeks later still waiting and experiencing so much pain from flares so will be ringing again today to find out what is happening

[Gillybob19 in reply to nanny_bee71]

Sorry to hear you're suffering whilst waiting for your treatment. I would definitely chase them up m.

[Neonkittie17 in reply to nanny_bee71]

Hope you hear soon. 🙏

[Summerrain14]

I have had a letter from my hospital to say that there is a current shortage of this biologic which I am on. They are going to be in touch with us within the next 10 days to let us know what the plan is. Infusions were mentioned in our letter. It did say the biologic should be back in stock by September. x

[Neonkittie17 in reply to Summerrain14]

Same here more or less. You may be lucky and prioritised for the pre filled syringes. x

[Tedtedted1]

Me neither, im in the same boat, ive booked a private apt with Rheumatologist to see if I can get swapped onto another. I,m constantly getting infections, so an infusion wouldn't work for me.

[Neonkittie17 in reply to Tedtedted1]

It would be IV until September so potentially two monthly infusions, but hopefully you can be accommodated by the pre filled syringes and not have to change med if you have had success with Abatacept.

[Peagreeen]

Hi. I'm on my 3rd week of abatacept and just have 2 clickjet pens left. I'm trying it again after stopping it last year due to symptoms which we weren't sure were side effects or due to stress as I'd just lost my Mum. I've also been contacted by the hospital pharmacist and told they are offering me at home infusions and I am also quite anxious about having 4 weeks worth of abatacept at once. I was told the syringes were for paediatric use.