Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and muscles... The symptoms that distinguish rheumatoid arthritis from other forms of arthritis are inflammation and soft-tissue swelling of many joints at the same time (polyarthritis). The joints are usually affected initially asymmetrically and then in a symmetrical fashion as the disease progresses. The pain generally improves with use of the affected joints, and there is...

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Orencia side effects?

I apologize in advance if this has been discussed before.

I have Orencia infusions every 28 days. It does help in that I'm fairly pain free and have more energy. However, the first couple of days after the infusion I don't feel good. I have headaches, the back of my neck hurts and I have some nausea.

Does anyone else experience this after their Orencia infusion? I think it really throws off the electrolytes because if I drink Gatorade (which I don't really like), I feel better.

Cheers,
Karen

Replies

deleted_user
deleted_user

yes i too have been on orencia for about 6 mo and i am very tired and can't eat much after for a couple of days
Christine26
Christine26

I guess all three of us can't sleep tonight. I have been on Orencia for the past about 2 and 1/2 yrs. I have found in the past 6 months that after I have the infusion, I do get a headache, though I am prone to migraines. I alos notice that my vision is a bit off. My Rheumatologist has suggested that I not take the Plaquenil that I am on Twice a day the night before and the morning of. I have found that this does help.
lycesq
lycesq

I'm about to start Orencia so I appreciate these posts.

Lynne
deleted_user
deleted_user

I have been on Orencia for about 8 months now. It has helped me with the pain. However, thelast two infusions (including last Thursday) I get very tired, headache, back of my neck hurts, body heat and pain in many of my joints along with feeling depression. I am also noticing vision problems. It is almost as if the eyes just canot focus. They are too weak and tired. I had no side effects in the beginning.
Thanks so much for sharing.
deleted_user
deleted_user

I am also getting Orencia infusions every month. I am experiencing headaches, neck pain, dizziness, and nausea. I didn't make the connection with Orencia until I read your entry. I though I had low blood sugar or an inner ear infection. So far (it's been 5 months) I haven't noticed any difference in my RA.
thinksRAstinks
thinksRAstinks

Are you all making sure you are super hydrated before your infusions? I hear that is key with Orencia. I don't use it tho so that's hearsay.
deleted_user
deleted_user

I am on Orencia, matter of fact I am blogging about it. Got to www.multiply.com/snicker33.

I talk all about my expierinces. I to have had side effect. Read my blog and tell me what you think and if you are going through that same thing.
deleted_user
deleted_user

Do any of you receive with your orencia a second bag containing saline? I just had my 6th treatment and within a hour after transfusion for the 1st time I had stomach pain. My blood pressure was elevated the next day ( I have highblood pressure, but it has been elevated only slightly before this.) My last infusion I was not given the saline and I wonder if this is why I had these symptoms this time? My stomach pain and blood pressure returned to normal in 12 hours, has anybody else had these symptoms or experience?
sandi7213
sandi7213

On my Remicade after care sheet it did meantion these could be side effect to watch for for, so I'm sure it's the same for Orenica. I'd bring it up when you go in for your next infusion
deleted_user
deleted_user

I've been on Orencia for about 2 1/2 years. And about 2 years ago I started getting head/ neck aches. My doctor prescribed Imitrex which works, although I don't really like how it makes me feel- tired and there's a pressure in my head before it kicks in. i've never had any issue with headaches or nausea immediately following the infusions, but typically a week or two later. Anyone found any good remedies for the headaches? Mine usually last 3-4 days and are subtle but annoying!
deleted_user
deleted_user

I self inject Orencia at home once a week and my pain is practically gone, but I have had constant headaches.
I've been taking Orencia for about 3 1/2 months.
LynnRivers
LynnRivers

Just waiting for Govt Approval to start Orencia here in Canada. Will be IV infusion for the first while - the Subcutaneous Injection version is not available in Canada yet (will be hopefully in 6 months or so).

Yeah not too keen on the IV as this will be the first time for me - both previous Biologics I did myself SubCu. I think maybe because the dosage is so much higher all at once that everyone is likely to experience more side effects with IV infusion.

The weekly or bi-weekely shots are lower dosage at one time so less likely to make you feel crappy.

Did Enbrel SC for 4 years (worked well but suddenly FAILED in Sept), then tried Humira SC for 3.5 months (did nothing to help me), now trying Orencia. I think my body is wise to the TNF-Alpha inhibitors - no point in trying Remicade.

Nice to know that if Orencia does work for me then I should be able to switch to SubCu in the next year. Apparently you can get the IV infusions done at home now... BC Pharamcare will pay the nurse to come to your house! Bonus... thought I was gonna have to go the hospital - although if I had a very bad reaction the first time the hospital is where I'd want to be..... hmmm.

I had to switch back the MTX from Leflunomide. We suspected the Leflunomide wasn't keeping me suppressed quite enough which is why I developed Anti-bodies to the Enbrel (made it fail). So now trying MTX via injection, hoping to reduce the side effects I had from oral usage. MTX still makes me feel CRAPPY! But no diarrhea yet so that's good.

So I will be joining the two needles a week club soon!! Yippy!
I'll try the Gatorade thing before my first injection and report back.
WarriorGal
WarriorGal

Been on Orenica for 3 years and have NONE of those side effects!

And I do get it with a bag os saline. i get it MONTHLY, not every 28 days and i take it with methatrexate.
Dreamchaser-Linda
Dreamchaser-Linda

I've been on Orencia/infusions for 2 years, still working great! This post was started in 2009 lol anyone notice? They didn't even have the shots yet, but I'm keeping the infusions because my insurance pays for almost all of it. For some reason infusions go on a different medical plan than the shots.
I get the headache but it's a sinus headache. Only the next morning and not every time. Couple aspirins knock it right out. I notice if I drink a lot of water the day before my infusion, I usually don't get a headache.

Lin
deleted_user
deleted_user

Have any of you considered the weekly injections versus the infusions? I take Orencia injections once a week. My only problem with the injections is staying on them long enough to see if they're working. One of my battles with RA treatments has been constant infections.

I take the shots (any of them) and a month later I have to stop due to infection.

Meanwhile, Orencia really hasn't caused any side effects.