Experience

[allanah]

Any one using Orencia infusions. Would love your experiences good or bad thanks xx

[Hidden]

Hello allanah

Is that Abatacept ??.

All the best

BOB

[allanah in reply to Hidden]

Yes I think it is !

[Hidden in reply to allanah]

allanah

Thanks

BOB

[farm123]

Hi,

Originally Abatacept was only available as an infusion but has become available (only during the last 12 months I think) as an injection. I am on Abatacept in self injection form - inject once a week - delivered by BUPA. No side effects but not sure it is working effectively for me, have to give it another couple of months.

[allanah in reply to farm123]

Thanks, had u tried other biologicals too ?

[farm123 in reply to allanah]

Yes. Also cannot tolerate DMARDS - Methletrexate, sulfasazine and leflumanide. Was on gold for around 7 years. Biologics : Etanacept (8 years), Humira (9 months), Rituximab at beginning of last year (1 cycle which made no difference), Toxilizumab last summer which affected neutrophils and started Abatacept end of November last year. Not sure where I go from here because I think the IM steroid and knee joints steroid are having more of an affect at the moment. Hope it makes a difference for you - it seems such a long road to find one that will suit and bring relief. Oh to be able to do what you want, when you want and how you want without having to think and plan and then decide you will have to try and do it another day. farm

[Sailaway]

I had my first injection today, so not much help with any long term effects, but thought I'd answer because of your question to farm123. Abatacept was prescribed for me after other treatments either failed or caused reactions, and because I had a very high DAS score. In the past I've tried Cimzia, Humira, rituximab and tocilizumab.

My extremely limited experience is that the injection didn't hurt a bit & I had no site reaction. I'm hoping the next 3 months bring a good response.

[allanah in reply to Sailaway]

That sounds like me too, had mtx Arava sulphasalasine , remicade, Enbrel and Humira, so same as you hoping this is the answer xxx thanks for the reply x

[Jeanabelle60]

i'm a bit like farm 123......i was on all of those drugs too. i also started Abatacept in july last year. in the beginning i had to go to the hospital for infusions but now i get it by injection that my wonderful neighbour gives me as my hand is a wee bit deformed and i can't do it myself.

into about my second infusion i woke one morning and i knew something was 'different' but couldn't just say what it was for about 10 minutes......then i realised that i could move without any pain. i started to go about my morning routine and i didn't have any pain......i foned everyone i knew to tell them i had no pain......that was 9 months ago and i am leading a perfectly normal life. the amount of medication i'm was on has been drastically reduced and i am now looking forward to a better future. abatacept for me, has been miraculous to say the least. i hope you get the same response.....XX

[allanah in reply to Jeanabelle60]

Thank you for giving me this feedback , I so hope this happens to me xx

[Hidden in reply to allanah]

Good luck honey, when are you starting this?

[allanah in reply to Hidden]

Waiting on the call , still waiting, still waiting !!!

[Hidden]

Hi, I am thinking about abatacept for my next biologic as enbrel has failed but am confused - is there a difference between the injections and the infusion, or are they the same 'potency'? Does one form work better than the other? Thanks, Virge

[allanah in reply to Hidden]

Don't have all the facts till I see them but I imagine Intravenous into veins would work quicker tHan those dispersed into a muscle? However it means a hospital trip rather than home care ? Xx

[farm123 in reply to allanah]

From what I remember when looking at the drug before starting it myself the infusion is once a month at hospital while the injection is weekly self inject at home. It probably depends on what your health authority policy is as to what you are offered.

When the injections were first brought out last year I believe people were started on infusions before moving to injection but now you can start straight on injections.

Syringes are spring loaded which I found slightly harder to press but needle very fine and goes in easy.

[Hidden in reply to allanah]

Hi, when do you start on this biologic? I am about to be changed because of my current biologic causing side effects. Have you tried calling NRAS- I read their booklet about biologics and was very informative. I am certain the telephone volunteers would now the correct answer and yes you will have to go into hospital to have an infusion but it only takes about an hour so good mug of tea, a biscuit some pleasant chat with others in the day medicine unit and the time will pass very pleasently. Wish you luck with this- you must keep us updated as to when and the benefits

Px

[allanah in reply to Hidden]

Thank you, I have read the booklets which are amazing , every time I started a new biologic, but was asking for people's experiences and what they found with of Orencia. Glad it's sparked some discussion as so far there are really positive experiences of this drug.

[Hidden]

Is the syringe like the metoject thingy? X

[farm123 in reply to Hidden]

I have not had metoject and only had normal plain syringes for previous drugs. Abatacept is like a normal syringe inside a cage which when you have fully pressed automatically withdraws the needle. My rheumy nurse did have an example syringe when she discussed starting the drug. As I previously had 10 years using a different syringe it has taken a bit of getting used to but not really a problem.

[LitChief]

Allanah, I have psoriatic arthritis type of RA) and the Orencia worked for me. I like the clickject pen, I am not great with needles but felt nothing doing this. I got awful mouthsores but think I was low on vitamin C and lysine which probably would have sorted it (folic acid didnt work). I only came off Orencia as I wanted to try a major diet change instead, I am a scientist and it foesnt sit right with me to be deliberately wrecking my immune system. No symptoms really at the minute but its only been a month, so I may be back on Orencia yet!

[helixhelix in reply to LitChief]

You are responding to very old posts...may not get replies.