Humira to Abatacept

kellis
kellis Bots Posts: 69
edited 2. May 2012, 18:09 in Living with Arthritis archive
I've been on Humira for 3 years and had 2 good years on it before it stopped working. I saw the rhumatologist yesterday who has decided to change my treatement to - I think - Abatacept. She didn't name the drug, but said it was by monthly infusion (fortnightly for first month) and lasts around half an hour. Having searched the various biological treatments by infusion on the web it's the one that seems to match that description.
I have my first treatment on 30th April.
What can I expect? I'm a little anxious as it seems to be quite a major thing, having to go to the hospital monthly rather than a quick fortnightly jab at home. I've also read quite a bit about rashes? Can I drive home afterwards - I forgot to ask her!
Any information (good or bad) please?!

Comments

  • lindalegs
    lindalegs Member Posts: 5,398
    edited 30. Nov -1, 00:00
    Hi Kellis,

    Can't help with your question as I haven't heard of that biologic. I'm on Enbrel. It must be a real bombshell when a drug you're settled with stops working. :roll:

    Hope someone comes along soon who can help.

    Luv,
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I can't help either, kellis, but I hope it works for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Kellis,

    Sorry that Humira stopped working for you. Based on the description it does sound like the next one your consultant would like you to try is abatacept. According to the website I've found it can be administered intravenously or by self-injection. There's a possibility of allergic reaction including rash, as is the case in all anti-TNF treatments, but if you have infusions in hospital I imagine you'll be monitored closely throughout. Unfortunately I can't help you out with the driving question, so it might be worth discussing this and any other concerns with the rheumatology nurse. And hopefully someone who's been through the experience will turn up here at some stage too!

    Hope it goes well,
    Phoebe
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • joollywoolly
    joollywoolly Member Posts: 8
    edited 30. Nov -1, 00:00
    hi kellis, this is my 1st time on the forum! I have been following it for some time now, you have inspired me to join in because i am having abatacept infusions! It has just recently been approved by NICE in the UK but has been widely used in USA & Europe with good results, as my rheumy told me! The only side effect i have had is a dull headache after infusion which paracetamol has taken away. In my experience going for infusion has been calm & relaxing, some time to relax & get to know my rheumy nurse & the team a bit better! This is my 4th biologic as the others did not work or did so only for a short time. I am 4 months into treatment & the jury is still out as to if it is working or not but my energy levels are well up from when i started treatment. Who knows what will work but you have to give it a go! So don't stress this 1 may be it, good luck! joollywoolly PS IT may be available later on in the year in injection form as rheumy told me.
  • joollywoolly
    joollywoolly Member Posts: 8
    edited 30. Nov -1, 00:00
    sorry kellis i forgot to say, i had to stay for 1hr after infusion for 3/4 treatments to make sure all was ok. i am able to drive there & back by myself no problems! joollywoolly
  • lindalegs
    lindalegs Member Posts: 5,398
    edited 30. Nov -1, 00:00
    joollywoolly wrote:
    hi kellis, this is my 1st time on the forum! I have been following it for some time now, you have inspired me to join in

    Hi Joolly,

    Just wanted to say Hi and welcome to posting on the forum. I also hung about in the wings before joining in. I'm always glad I did and hope you are too. :D

    Luv,
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • joollywoolly
    joollywoolly Member Posts: 8
    edited 30. Nov -1, 00:00
    hi lindalegs thanks for the welcome! I am so glad i finally took the plunge to join in! My computer skills are very basic, still typing with 2 fingers but getting there. Looking forward!
  • lindalegs
    lindalegs Member Posts: 5,398
    edited 30. Nov -1, 00:00
    joollywoolly wrote:
    hi lindalegs thanks for the welcome! I am so glad i finally took the plunge to join in! My computer skills are very basic, still typing with 2 fingers but getting there. Looking forward!

    It's amazing the power of two fingers Joolly :wink::lol:

    Luv,
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • kellis
    kellis Bots Posts: 69
    edited 30. Nov -1, 00:00
    Thank you jw for your informed reply.
    I was told to arrive at 9am on Monday for a blood test, then the infusion which will take around half an hour, then to hang around for about 2 hours afterwards while they monitor me.....whatever that involves!
    The Humira worked brilliantly for the first couple of years - I was completely in remission and back to my old self - but due to being put on a trial to see if I would remain in remission while they gradually reduced my dose and then took it away completely it's not working now even though I've been back on full dose for 5 months. So fed up as I had a taste of normality for just a short time and just hope I can get it back with the Abatacept.
  • joollywoolly
    joollywoolly Member Posts: 8
    edited 30. Nov -1, 00:00
    sorry to hear you were put on a trial with the humira, makes you wonder if they had left you to it would you still be feeling well!you must be gutted! Sometimes i feel like a guinnea pig, treatment can very much a hit or a miss! I am seronegative RA which seems to be hard to pin down. Anyway, when they monitor me after treatment it is just blood pressure, temperature & pulse every 15-30 minutes. Try not to worry it really isn`t as bad as it sounds.jw
  • kellis
    kellis Bots Posts: 69
    edited 30. Nov -1, 00:00
    "sorry to hear you were put on a trial with the humira, makes you wonder if they had left you to it would you still be feeling well!"
    - my thoughts exactly!!

    "you must be gutted!"
    - to put it mildly, yes!!

    "Sometimes i feel like a guinnea pig"
    - yep!
  • kellis
    kellis Bots Posts: 69
    edited 30. Nov -1, 00:00
    OK, I went along yesterday for my first infusion.
    It wasn't Abatacept as I had thought, but RoActemra (tocilizumab).
    I was on the drip for two hours and felt fine afterwards, although I was a bit headachy and had a bit of fizzy indegestion yesterday evening. This morning I feel 'fine' (or normal for this time of the morning anyway!) so now just need to wait and see if it works or not.....
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I too hope it works. I think all of these things have a finite life but while they last (and if they work) they are good. I sincerely hope you are able to replicate the success of the humira with the tocilizumab and I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • joollywoolly
    joollywoolly Member Posts: 8
    edited 30. Nov -1, 00:00
    hi kellis, glad you got 1st infusion over with sometimes its not knowing what to expect is worse than the treatment! As usual its a waiting game but can well be worth the wait! really hope it works for you, keep us posted.
    I've been laid up for last two days as i had knees injected again, been a pain as i have 2 children aged 7 & 4yrs. Hubby is great but he works full time, gets tired and doesn't know where everything is eg bedsheets! LOL! My mum is the best during the day at a spritely age of 69yrs. rheumy said even with biologics my knees may not settle so he sending me for Yttrium treatment which I have to stay in hospital for up to 5 days. thats ok because i would try anything but kids need some organising although they becoming a lot more independent which is good for them. Awk well onwards & upwards

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