Abatacept Update: Hi All Have decided to bite the... - NRAS

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Abatacept Update

Mistydawn profile image
8 Replies

Hi All

Have decided to bite the bullet and start on weekly abatacept as soon as healthcare at home can deliver and show me how to inject - a couple of weeks from now I have been told!

Any tips on how and when I should inject please? Any immediate side effects or over the first 24 to 48 hours?

Anything else I need to know?

I had a pneumonia vaccination on Thursday in preparation for being immunocompromised.

Thank you and gentle hugs 😘

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Mistydawn profile image
Mistydawn
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8 Replies
Moomin8 profile image
Moomin8

Hi- I'm not taking Abatacept, however, best of luck for a pain-free ride 🙂

farm123 profile image
farm123

Have you also had the flu jab?

I have been on Abatacept since November 13. It took a long time to work (9 months with the addition of 200mg hydroxy at 6 months which helped). I was really bad before I started. Had to stop March 15 for a TKR but soon kicked back in and things are good at the moment. When I first started the following afternoon was spent asleep but now I have no effects. I often have low WBC and neuts but have not suffered from them - because of the difference the drug made to me it was decided to carry on even with low levels unless there was anything else causing issues as I have been through a lot of drugs and there were not many options left at the time. Hope it makes a difference for you. Farm

kaypiercy profile image
kaypiercy

Hi Mistydawn

I have been on Abatacept now for ten weeks, I inject in the morning which seems to work for me, guess it doesn't matter when, just fit it in with your routine, then keep to the same day/time each week.

Side effects for me have been headaches not bad ones but sort of just dull annoying headaches in the mornings, although these are not all the time usually first 2 days after injecting. I am still not completely pain or stiffness free after having 10 injections but neither am I in agonising pain and suffering disabling swollen joints, I have even in the last 2 weeks gone back to work full time, so of me I have to say it works, touch wood and all that !

I am also injecting 20 mg methotrexate each week and of course take folic acid which is the only tablet I take.

kind regards to you and everyone on the site

Kay

popsmith1874 profile image
popsmith1874

Hi I'm on Benepali which has taken all my pain away I have quite a bit off fatigue at the moment but I can handle that , I've been on it for 2 months and I inject weekly at night before I go to bed and have no problems , I also take 20 Mgs off mtx along with it

Mistydawn profile image
Mistydawn

Thank you all for your responses so far. I had a flu jab in October. I will initially only be on abatacept (mono therapy) as HCQ, MTX and LEF caused side effects.

Farm/Kay, I do hope it starts working sooner rather than later. I am looking to reduce my hours at work to try and get this disease under control. I really struggle first thing in the morning so looking to work afternoons only. Will seriously put a dent in my finances but two years on i need to find a different approach.

xx

Smith7 profile image
Smith7

Hi Mistydawn,

The person who shows you how to inject will also be able to advise you on any questions/concerns you may have about the procedure.

Best wishes

Kathy1465 profile image
Kathy1465

I was previously on Humira for two years. I just started Orencia. Only have had one injection. I was veeeerrrrry fatigued the following day. Developed a migraine as well. Also had some blurry vision and sore throat. I will definitely be taking my second injection on a weekend so I can recover the following day. I am hopeful that the side effects with pass over time. I have already noticed an improvement in my pain. But I am a very fast responder to biologics. Same thing happened on Humira as well, although I had zero side effects with Humira.

Mistydawn profile image
Mistydawn

Thanks Kathy, please keep me posted. I already suffer from vertiginous migraines and am concerned abatacept might make them worse.

Why are you changing from Humira?

x

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