Abatacept advice please.

dibdab

Having had a rather up and down few months, with my RA misbehaving for the last 6 months on top of all kinds of other rubbish going on around me, the rheumatology team are pondering prescribing Abatacept to try and keep things on a more even keel. I currently take Plaquinel, Sulphasalazine and Leflunomide, but have a fairly consistently low Neutraphyl count (on fortnightly bloods for almost 2 years), so there's some question marks about whether my system will tolerate adding in more meds. :oops:

I'd appreciate any insights into the drug and how useful or problematic it has proved to be. I know we all react differently to meds but hearing from others who take it is helpful.

Thanks

Deb x

dreamdaisy

I don't think I've had that one - if it's also the one known as orencia then I definitely haven't. It's the next logical step if your DMARDs are not holding stuff at bay and if course you won't know until you try: it's a big step, isn't it? I read in the papers last weekend that adalimumab (humira) is now out of its patent so I suspect I will be switched to its bio-similar - this is causing me mixed feelings. DD

dibdab

It is Orencia DD, but my GP has reservations because of my recurring dodgy chest issues-like you the asthma rears its ugly head at the first glimpse of a cold - in a 'shared care' fashion the rheumy and GP are currently sharing views and ideas around the impaired immune system and low neutraphyls. :oops: Being a 'complex case' is a nuisance!

I absolutely sympathise with your reservations about bio-similar meds, I've had so many different forms of the azithromycin (prophylactic antibiotic) that I sometimes wonder exactly what it is I'm taking.


Debx

dreamdaisy

Overall I have had very little trouble with my asthma, I am a good girl when it comes to doing my two inhalers and I am sure that helps. Do you remember my riding a unicycle whilst juggling my meds? It's your turn on the hot seat . . . . DD

PS I am sure you know my views on GPs, they like theory and know very little about an awful lot. He is not you, does not have what you have, is not living your life.

mig

Where can I read the info on humira DD ?

trepolpen

hi Deb , I started Abatacept 5 weeks ago , had no side effects at all but dont think its kicked in yet , this is my 4th anti TNF-drug also had rituximab which I did get on with but because need several joints replace they took me off it

I would give Abatacept a try , its one of the better anti-tnf & got a good reputation , weekly injections by a pen & no side effects

dibdab

Thanks for the encouragement Trepolpen. I am at the mercy of the decision makers to see if they'll agree to prescribe. I have a review in 6 weeks (or whenever they send me an appointment!) so will keep you updated.

DD, I absolutely know what you mean about meds and juggling-sometimes it feels like all the balls are about to crash around me. Like you I'm assiduous about the inhalers, sadly the bronchiectasis arose from repeated chest infections in my early DMARD days when I was blighted with a rheumy who looked at my bloods and was blithely unconcerned about my state of health otherwise- I knew the immune system was suffering but he ignored it. I sought out referral to an alternative consultant in the same department, he's wonderful and soon referred me to a Respiratory consultant and got lots of immunology tests done-I'm more even now but the damage was done and I live with consequences .


Deb x

premierscfc04

I've been on Abatacept (Orencia) since the beginning of the year after having a bad reaction to my final Anti-TNF Golilimab.
Fortunately the only problem I've had Abatacept is not being able to use the pen myself as I find it impossible to press the button at the top of the pen.
I hope it works for you if it is prescribed.

dibdab

Thanks for your encouragement. Those pens are a trial aren't hey :shock: -I managed them reasonably well back in the days when I used methotrexate so hopefully they will be similar and achievable-though I understand some folk have monthly infusions -have no idea as yet of details.

Debx

premierscfc04

t79146 Maybe this isn't recommended but on the odd occasion when I inject myself I put the pen against my stomach and put the button (which is on the opposite end to the needle) against something that wont move like a wardrobe door and lean into it which does the pressing for me. It is the toughest pen I have used so far🙄

dibdab

Oh dear-that sounds like a tricky manoeuvre-perhaps it's safer to ask someone to help?
Deb x

premierscfc04

I do now.. Not my best idea🙄

dibdab wrote:

Oh dear-that sounds like a tricky manoeuvre-perhaps it's safer to ask someone to help?
Deb x