Abatacept infusion not lasting 4 weeks

[Otto11]

Hi has anyone swapping from injections to infusions find that the infusions are not lasting the full 4 weeks. I've been struggling for the past week & my next infusion is not due till next week. Does it take time to build up in your system? Does anyone know or feel the same as me?

[Neonkittie17]

I’d have thought it would have been the other way round and lasted longer. 🤷‍♀️ I don’t think there is any other difference in ingredients other than IV has maltose to assist the infusion process, but I’ve no idea of why it’s not lasting the full month sorry and hope you can switch back to sub cut asap. Have they given you the lesser dose of IV if you are a slim lady, lighter in weight?

Sorry to hear this and hope all is back on track soon.

[Otto11 in reply to Neonkittie17]

Hi again. I have no idea tbh. They sent 2 boxes & I was given both. I weigh about 52 kgs. I’m just really stiff, hands, wrists , shoulders, knees & back. ( That sounds like a song) 🤣. I’m not normally like this. x

[Neonkittie17 in reply to Otto11]

I think it’s 59kgs and above you go on the bigger IV dose so you’re under that. I’d ask how long before you can return to sub cut as you don’t want to go further downhill with this swap back and forth. Did you feel the IV did something and improved you for the first two weeks? Could be that it hasn’t had chance to do enough yet. If you had 4 sub cut before going to IV and had one IV, then it’s 8 weeks’ worth of med really, and it takes about that before people feel some difference. 🙏 x

[Otto11]

Thanks. You are very clued up on this. Well done. I think because I was off injections for 7 weeks March & April due to awful flu & chest infection. I eventually saw a consultant who said we need to get you back on Biologics asap. I havnt felt quite as good since then. Every week I’m ready by day 5 for the next injection. Maybe it’s all relevant. I’m having my next infusion next Monday so 🤞it’s a bit better next time. TBH I’m going away in September & quite looking forward to not having the usual hassle at customs with my coolbag x

[Neonkittie17 in reply to Otto11]

That’s one good thing about the infusions.no need to travel with anything. There is still time for Abatacept to work again so as hard as it is try keep faith with it for a while longer. Chat with the rheumy nurse when you’re there. Thank you, I’m no expert but I had two years of conversations on and off with my rheumy before I started it. x

[nanny_bee71]

Interesting and following - I have my first on 20 August with the 2nd one 2 weeks later on 3 September but then a 4 week gap to the 3rd one.

[Otto11 in reply to nanny_bee71]

Sorry forgot to reply. Blame the olympics! Hope it all goes well x

[nanny_bee71 in reply to Otto11]

Thanks Otto - wasn't expecting a reply and I've been blaming the Olympics for everything!!!!! I'll let you know how it goes

[Otto11 in reply to nanny_bee71]

Yes do x

[Leics]

I don’t know if it will help but I was contacted by Lloyds on Monday and injections are back in stock so although I did a lot of chasing as I didn’t really want infusions (long story) so for me I was only a few days late without injections. As I made it clear I didn’t believe that in my case I was suitable for infusions maybe that’s why I got some more but I know they didn’t have any stock but in my area it seems they’re getting them back in. So I hope the infusions work for you and start to last a bit longer if that’s your choice but pens are now an option again it seems.

[Otto11 in reply to Leics]

Thanks. I’m having my next one tomorrow so keeping my fingers crossed. x

[Gillybob19]

I had a call from Lloyds today saying I can have the injections delivered in a couple of weeks so I don't think there will be a long wait for them. I thought I'd at least be having the infusion again this month if not next.

[Otto11 in reply to Gillybob19]

Thanks that’s good to know. Quite honestly though I’m quite looking forward to going on holiday without the hassle of a coolbag & grief from customs at the airport. Happy to go back in injections once home. x

[Cherwin]

Hi hope you have/are having a good holiday. Just read your health history so sorry you have been struggling so much. Can I ask if your memory/ cognative issues have improved since you have been on biologics. My husband has psoriatic arthritis been on methotrexate and leflunamide and synthetic folic acid for 15 yrs. He has now come off methotrexate as his memory and conversation is not good, I wanted to see if the metho and FA was causing the problem. He now seems to be deteriorating in the cognitive issues I am wondering if biologicals would be helpful.