Abatacept .. clickpens to be resumed by September.

[Neonkittie17]

My delivery of four Abatacept pre-filled syringes arrived today on time as arranged. Then a phone call this afternoon from the hospital pharmacy technician to say that the pens will be back in supply sooner than anticipated, in September. She said I may not get clickpens next time if Lloyds have ordered syringes for my September script. It’s good to know the manufacturers seem to have rectified the pen case problems sooner than thought. Not sure how it is for the rest of the UK regions. I’m mid Yorkshire hospitals region.

[Fra22-57]

aww that’s great news.thanks for sharing

[nanny_bee71]

Thanks for sharing - by the time I get my first infusion in 2 weeks time, they will be looking to swap me on to clickpens (I hope!!!) - it's an awful drag to the hospital where I have to go for the infusions (living in Cornwall - lots of holiday traffic and can only be done at our main hospital etc)

[Neonkittie17 in reply to nanny_bee71]

I do hope they can move you back to your sub cut soon. 🙏 I am not sure it will be quite so quick to move people back as the pharmacist said to me yesterday, that it was more practical to go ahead with what had been arranged temporarily in some cases. It’s a change on your script which means rheumy/hospital pharmacy/meds company pharmacy all have to process it. I do hope you can get moved back quickly and I think we’ll have many differing experiences of this. Good luck. x

[Leics]

Oooh thanks for the update. After all the chasing I had to do to find out if I’m a suitable candidate for infusions I have heard absolutely nothing 🙄. By the time they get around to sorting it out the clickpens will be back in stock. Not sure I’m gonna be messed about again. Only 4 injections now nothing and awaiting infusions only to go back to injections in a months time. What a farce. It’s been a very difficult time for patients and clinical staff alike but my goodness where is it going to leave us all. Infusions ? Or back to injections ? Sorry bit of a moan but I’m so sick of flaring and being in so much pain.

[Neonkittie17 in reply to Leics]

No it’s not a moan, it’s frustration. Many of us have felt this frustration and stress. It’s not good or fair you haven’t heard anything. Have your sub cut meds run out now? As I said to NannyBee, the pharmacist said it may take another month to sort out the swap back and that the meds supplier companies are unlikely to undo the scripts they’ve organised. I’m sorry you’re flaring and you should not be left in limbo like this. 🤨 x

[Leics in reply to Neonkittie17]

Yep ran out a week ago.

[Neonkittie17 in reply to Leics]

That’s not going to help your flaring at all, having to stop-start the med. I hope you can leave rheumatology an urgent helpline message and if not, what’s your next move? Can PALS assist if rheumatology won’t respond/contact you to do anything to help? Maybe speaking to the hospital pharmacist to see if they are involved. I’m sorry this is happening to you and hope it can be resolved to your satisfaction asap. 🙏🩷

[Summerrain14]

I have just had a letter from my rheumatology team to say that the shortage of the clickpens is due to end at the end of August. We have been advised to keep on with our infusions until we have our first delivery of our pens again and then to ring the rheumatology team to let them know. I have had two infusions already and next one is due on the 21st August and have one booked in for September too by which I should be back on the click pens. I have been so lucky to with my team and have not been without my biologic. I count my blessings. I am based in Greater Manchester. x

[Neonkittie17 in reply to Summerrain14]

I have been very lucky not to have been switched to infusions as that would not have suited me. I haven’t been without any sub cut either so grateful for that. The inconveniences and silence/lack of info I experienced were out of my rheumy’s control. She did all that was required for me to stay on sub cut. I don’t mind if they send pens or syringes for my September supply. Sounds like a sensible and safer idea to wait till you’ve had your pens delivered before saying you no longer require the infusions. Hope all is steady. 🙏🩷

[lucymead in reply to Summerrain14]

Lucy you. I live in greater Manchester too. I have not had any clickjet Orencia pens for over a month now. and only one phone call from Rheumy saying they are trying to sort something out. I have left 3 messages and no reply. I go away in 2 weeks and very worried I will flare while away. I have Severe Sero Positive RA and Collagenous Colitis.

[Love2camp]

Thanks for the update Neonkittie 🙂 I'm due my 1st infusion today and have been off my meds for 4wks due to having a hip replacement. Everything is starting to grumble now so I'm looking forward to having it done. The nurse is coming to my house to do it. I'd much rather have the pens so fingers crossed we all get them back soon x

[Neonkittie17 in reply to Love2camp]

I hope the infusion went well works fast for you and you feel improvement very soon. You could do with a boost after your hip op and hope all goes well there. 🩷 I think we’ll all be back to where we were soon re our Abatacept. 🙏 x

[debjw]

That’s good news. I had a monthly infusion just over a week ago but it doesn’t seem to have been so effective as the weekly injections

[Neonkittie17 in reply to debjw]

Hopefully you’re back on your usual weekly mileage injection soon. x