Abatacept problem

[Shonkie]

I have been started on Abatacept with one lesson in its use. The next one to check I could cope was cancelled three weeks ago and I have not heard from the company so I have missed the doses. I have rung them and they have promised an appointment but not given one. Isn’t life difficult enough without this?

[KittyJ]

are you not happy to do it yourself now? I only had one visit and then was on my own but I did use the instructions when I did it too. The sooner you start the sooner you’ll get the benefits, it’s not good they’re not doing what they say they will but the other option is to kick up a fuss 🤞🏻for you.

[Shonkie in reply to KittyJ]

Thanks. As I have asked them to come back as they agreed it would probably make a mess if I used my own initiative. Trying though!

[wilbertjellyfish in reply to Shonkie]

I doubt it you mess anything. Trust yourself, you can do it. Remember fortune favours the brave.

[medway-lady]

The syringe designed by NASA at huge cost no doubt. I never had a lesson just had it delivered but it was failsafe really. It gave me awful eczema so was stopped and sadly never worked that well anyway. I hope it works for you but keep an eye out for rashes that don’t go. Then turn nasty.

[Neonkittie17]

Hope you are soon able to get your nurse appointment visit for Abatacept. I’ve been on the clickpens since August 2022. No eczema problems like Medway sadly had. Good luck. 🩷

[wilbertjellyfish]

When I started abatacept the nurses said " no point in you coming in, you've tried enough different injections, you'll be fine.....and i was. " From memory it's a relatively painless ond so if you feel you can do o it just do it. As KittyJ says the sooner you start the sooner the you'll hopefully feel better.

[Neonkittie17 in reply to wilbertjellyfish]

Such differing advice for some of us. I’m an RA vet since 1995 and done 20 years of Mtx syringe injections and click pens and 2 previous biological pens. Still the meds co nurse attended at the insistence of my rheumy who knows me very well and respects my knowledge of my condition/general health knowledge , etc,

A nurse who attended from the meds co just to watch me do it and on standby with her oxygen if needed, said Abatacept is the easiest of pens to use (I agree!) and just place it firmly over your thigh and click. Felt nothing tbh and no reactions after, but she said we have to go along with what your rheumy says.

Admittedly, I’ve had oral meds allergies and sensitivities, so that could be why my rheumy insisted, but the nurse just watched me and was there with her oxygen in her car etc., if needed.

[wilbertjellyfish in reply to Neonkittie17]

lol, never occurred to me I’d have some awful reaction. I’m starting ritoximab infusion next week and I’m worried about it.

[Neonkittie17 in reply to wilbertjellyfish]

Worry not. Very unlikely to have any major reaction to Rituximab that the rheumy infusion team can’t remedy when you’re there for infusion as with Rtx you are monitored (temp/BP/oxygen levels) every half hour and you get an anti histamine and paracetamol tablet and an IV steroid infusion of around 20 mins prior to the Rtx to help the infusion go smoothly, I had Rtx from 2014-2021. So you’ll be prepped and monitored well for the Rtx. Worse that will happen is you’ll probably be bored and feel sleepy as it takes a long time! Take something to read or listen to as it’s a long day. That in itself can be exhausting so expect to feel tired after it. Good luck. I think you’ll be fine. 🩷

[Wantplaytennis]

I take abatacept. Just follow the info leaflet you'll be fine.i inject in the thigh and I find it's painless.