Orencia: Hi, I’m a newbie with Rheumatoid Arthritis. My... - NRAS

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Orencia

Jollyjill profile image
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Hi, I’m a newbie with Rheumatoid Arthritis. My Rheumatologist wants me to stop Plaquenil and go on a biologic. She suggests Orencia. Would appreciate hearing from fellow RA warriors who have taken Orencia (or other biologic) and if so, in what form - infusion or injection. Advice, please! Thanks!

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Jollyjill
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KittyJ profile image
KittyJ

If you put that into the search box and filter for NRAS then all the posts regarding it will come up 😊

AgedCrone profile image
AgedCrone

Listen to your rheumatologist....Biologic drugs all act differently & what suits some will not be suitable for another....those who are needle phobics won’t want infusions or injections ...for others they are the only way to go.

Have a word with your rheumy nurse....she will explain why Orencia has been suggested & tell you if there is another Bio drug that could suit you.

There are so many plus the Biosimilars these days....there is bound to be one that will help you.

Jollyjill profile image
Jollyjill in reply to AgedCrone

Thank you! I’m doing a lot of online research & asking questions since this is entirely new territory for me

AgedCrone profile image
AgedCrone in reply to Jollyjill

Tbh...the only research you should listen to is that which your Rheumatologist has already done in choosing the Bio she has suggested for you. She has had years of experience & she knows exactly what she feels is needed to treat you,

Unless you understand exactly how each Biologic drug will treat the type of RA that you have .....you can read everything available....but until you take the drug you won’t know how you will react to it.

Just as many people succeed on a drug ...& just keep quiet & get on with their life.....as those who fail on that same drug & complain loud & long.

You can of course read Dr Google & prepare a list of all the horrors that might exist ...scaring yourself witless in the process...or plough through research that won’t apply to you...thus a waste of time.

Why not try accepting your doctor’s professional opinion & get on with your treatment & enjoy some relief from your disease?

lornaisobel profile image
lornaisobel

Ive been on orencea for some years and im better on it than off it but what suits me may not suit you or it might - I think its just a matter of suck it and see - use a pen to inject and leave it out of fridge for half an hour before using - google it to find out all you can about it x

Neonkittie17 profile image
Neonkittie17

Hi Jolly, you can easily learn to do your own injections (I think Orencia is in a click pen type injection?) from the Rheumy nurses and infusions are so carefully monitored and they look after you well, whether you’re in there for a long duration (my infusion is 8 hours approx as you have to do IV saline and steroid before the actual infusion) or an hour or two for a shorter infusion. (I think Orencia/Abatercept is a shorter, hourly infusion as a lady I met a few times when I was there for my long infusions was in and out quickly within the hour and she went every month.) I’m not going to say much more as I don’t want to bombard you. Are you in the USA or UK? Good luck and these meds work great for so many people when DMARDs have lost their efficacy.

rounder profile image
rounder

Hi Jolly. I take Orencia (also called abatacept) and self inject weekly using a pen style injection. It's super easy, not painful and holds my RA well in check. I've tried all sorts but this has given me the best results with no side effects so far. I opted for self injections rather than fortnightly visits to the hospital for an infusion, and the only draw back for me is losing a shelf of my fridge to store the injections at home.

We're all different and different meds work for us, but for me it's been a huge blessing. Good luck with your research and future treatment.

helixhelix profile image
helixhelix

When I was started on a biologic I was given a choice. So my decision was based on not wanting to have to go to hospital for infusions, so wanted one that was injectable (even tho’ I am needle phobic), not minding one that I take every week rather than every two weeks (if you travel a lot two weeks might be more convenient), but above all I chose the one with the shortest half life so it would be out of my body as quickly as possible.

Since no-one can tell you whether it will work or not all you can do is try.

Silverpixie profile image
Silverpixie

Orencia was my fourth biologic. It didn't give me brilliant results but better than the previous 3 I tried. The fifth (tocilizumab) has been excellent. Go with your rheumatologist. My top tip would be to have the injections delivered to your local chemists and buy a medigenix bag. This means you don't have to stay home to accept delivery.

nomoreheels profile image
nomoreheels

Hiya Jollyjill, welcome to us here at NRAS. I don't as a rule involve myself in info re RD treatments other than those I've had personal experience of, including Orencia (abatacept), but just wanted to welcome you. Also to mention also that as you're in the US guidelines may differ from our own (NRAS is a UK based charity) so please keep that in mind. That said we do have some US members so hopefully if there are any who are on abatacept they will be along to share their experiences.

Biofreak profile image
Biofreak

Hi Jollyjill and welcome. Orencia is my 4th biologic and it has been really effective for me with no noticeable side effects. It would be great if biologic treatments could be more tailored to the individual but, unfortunately, at the moment it's more a case of try it and see if it works. The rheumatologist will have made a considered decision and if it doesn't work for you there are other options. Good luck.

Sheila_G profile image
Sheila_G

Good advice from Agedcrone. Good luck x

LitChief profile image
LitChief

Hi I have just come off Orencia after 6 months, the click pen is so easy you barely feel it and have to check its gone in at all! I was on Methotrexate and Humira before it. It got rid of my symptoms 99% of the time but I got awful mouthsores (think those go if you take vitamin c or lysine, folic acid didnt help) but I got sick of being immunocompromised and treating the symptoms not the cause. I am a month off meds, dairy and gluten now and all my symptoms are gone bar a tiny bit of stiffness. No swelling or pain. Early days though. Good luck with your treatment.

Jollyjill profile image
Jollyjill

Thanks for all your helpful comments. After much deliberation and consultations with a Hematologist my RA doctor recommended I see to investigate Low White Blood Cell counts, I’ve decided to resume talking Methotrexate which worked very well in the past. LWBC is a side effect of many RA remedies so I decided that known evils are better than unknown ones! Wish me luck!

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