Orencia...help! | Arthritis Information

Is anyone, out there, taking Orencia? I just had my first infusion, Yesterday, and I have a terrible headache and nausea. I was wondering if anyone else had these type of side effects and if so, how long do they last? I'd appreciate any information you might have, regarding this new medication. I plan to call the nurse, at the infusion center, when it opens, but I'd still like to hear from someone that has actually taken this medication.

Thanks so much!

Hi Renee,

I had nausea and headache the first couple of times and then I never really had it again.

I think I've had 6 infusions, or maybe 7...just got back from one.

I hope your side effects don't last much longer.

Hi Renee,

I have been receiving Orencia (abatacept) infusions since February. I have not experienced any of the AE's that you mentioned but I did feel kind of spacey after the first infusion. Never the less, I decided to make a couple of stops on my way home. Ran over a curb at one place. Backed into a parked car at another. Then, decided to take my stupid a** home, pronto! Haven't experienced anything else since then. I always take a 650 ER Tylenol and eat something before being infused. Seems to work for me. Also, I have them run the Orencia drip for 45 minutes to an hour instead of 30 minutes and when thats gone, I have them continue to run the accompanying simple solution until that bag is empty or until I have to pee so bad that I can't stand it anymore. Ha!

I believe about 10% of Orencia patients experience initial headache as a primary AE and nausea is about 6%. Best of luck with your future infusions.

I have been on it since jan 08 at first I got a bad headache but now I am okay. just recently they lowered my dose cause I have been getting these terrible rashes 1-2 weeks after the iv it was on my torso looked like somebody poured hot oil on me. the first time it lasted 3 wks 4 creams and trips to a dermatoligist finally found the right cream 2 more mnthe after i had treatment i got rash but the cream got rid of it they lowered my dose this mnth to 3 from 4 as it is neccary to have 4 to control my ra well 3 AND IT did not do anything to control my ra but no rash so far. I tild my drs. that the ra is easier than the pain from the rashes so possibly a new drug in my future it is too bad as this one is the only one to control my ra at all even at such a high dose anyways we shall see as i said it has been a good drug with very few side effect up untill now .......teresaThanks, so much, to those of you that repsonded. I was beginning to think that I was the only taking it. For some reason, it seems to feel better when you're not alone. I'm so sorry for those of you that had bad side effects too. Your responses made me feel so much better and I appreciate all of them. Hopefully, Orencia will be the answer to all our prayers!

The nurses at the infusion center were wonderful and caring about my situation. My RD, however, was a different story. For some reason, she doesn't seem convinced that it was the Orencia that caused the headache and nausea, even though these are the first two side effects listed, in the literature. Instead of making adjustments, to make the infusion more tolerable, she wants to wait and see if it happens again, to determine if it was the Orencia that caused the side effects. The headache was one of the worst, I've ever had, and I would prefer not to go through it again. I think it's time that I finally change RD's.

Thanks, again, for your responses!

You mentioned that you also had a headache and nausea, when you first started Orencia. I was wondering if it was a really bad headache and also, how long did it last?

Thanks, so much, for you response. It's nice to know that there are others, out there, that are going through the same thing.

Renee

You mentioned that you also had a bad headache while taking Orencia. I was just wondering, how long did your headache last (hours, days, etc.)? It's nice to know that the headaches stopped. Thanks, so much, for your input.

Renee

Rennee...I've been on Orencia for a year now and did not experience the side-effects you mentioned. It does take a couple of months before you notice improvemet. It's probably like most of the drugs out there, your body will adjust. There's also the anxiousness that goes along with trying a new medication. Hope you adjust quickly and that this medicine works out for you!

I'm going to be starting Orencia soon and I was wondering what to expect with the first infusion. I was told when I started Remicade to take two tylenol an hour before the infusion. Are there any meds that are suggested prior to the Orencia infusion? I know I still got one heck of a headache with the first few remicade infusions but this got better after each infusion until they stopped. I did still get some nausea though.

Here's hoping Orencia will be my "magic bullet."

Bob

Bob,

I go to an infusion center, at my doctor's office, for my Orencia infusions, and they gave me two tylenol and one Benedryl, before starting the infusion. As you saw, from my post, it didn't seem to prevent me from getting a severe headache and nausea. But, like they say, everyone is different and has different reactions to medication, so you might not have any problems at all. When I took Remicade, the first time (for a year), I had no side effects at all, whereas, you mentioned having a headache. I guess you never know until you try it. I hope you do well with Orencia! Godd luck!

Renee