Orencia (abatacept): My rheumatologist wants to put me... - NRAS

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Orencia (abatacept)

Gracie2019 profile image
9 Replies

My rheumatologist wants to put me on a monthly infusion of Orencia after having failed to find relief with all the standard oral meds (most of which caused terrible rashes, mouth sores, and/or hair loss) 😕. I must wait for insurance to approve it however, and fear it is going to be very expensive due to our horrible health care system in the US.

Wondering if anyone is using this biologic and any side effects or positives you might be receiving.

Thank you.

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Gracie2019 profile image
Gracie2019
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9 Replies
Mistydawn profile image
Mistydawn

I’ve been on it for three years. Worked within weeks. The only side effect I had was that it brought my migraines back which had been in r

Fra22-57 profile image
Fra22-57

I have been on it few months.3 others failed but this has been best.still have pain but lots less and I can do things more.Its worth a try.hope it works for you

LesBev profile image
LesBev

Hi. It was almost a last resort for me too and although not remission inducing it’s given me the most relief. No side effects at all. I have to add prednisone on top. Good luck and let us know how you get on. Lesley

lornaisobel profile image
lornaisobel

I dont know how much it costs but Ive been on it for a couple of years - i inject weekly - it seems to be ok for me but I suppose different things work for different people. With RA drugs you seem to have to ' suck it and see' good luck x

Gracie2019 profile image
Gracie2019 in reply to lornaisobel

My estimated out of pocket cost for the monthly infusions is estimated to be $1300-$1400. 😳

thelmar profile image
thelmar

I have been on it 3 years and have been able reduce my methotrexate dose. I also have a monthly infusion and the only side effect is a mild headache same day and second day. I was in remission but have had to miss a few infusions due to other health problems so am no longer in remission but hopefully will soon get back to it.

gradyjackjacob profile image
gradyjackjacob

I was on it for three years and never had a flare up but all of a sudden my inflammation levels were rising with each blood test so was taken off it and put on olumient instead.Good luck.

ezlong profile image
ezlong

Hi Gracie,

I've been on Orencia for 2 1/2 years, after problems with dmards, like you. It has been very effective for me. I'm over 65, hence I'm on Medicare with supplement. (I too live in the US.) They have covered it quite well. I have had a couple of flares that were put down with a short regimen of Prednisone, continuing with Orencia at the same time. I've not been able to discern any side effects. I wish you well and hope your insurance covers it for you.

LitChief profile image
LitChief

I had mouth sores on Orencia but they did improve when I took vitamin c and apparently lysine is even better. It worked well for me, i only came off it to try a no-dairy/gluten diet instead, going great so far but early days. Good luck

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