Anyone taking Orencia?

[Ms-D]

After months of taking Idacio, my consultant has decided to switch my biologic to Orencia under the brand name of Abatacept. I have no scooby what this biologic is like except that I can not take it out of the fridge for more than 30 minutes. This i will find painful as leaving Idacio for an hour was so less painful.

Anyone taking this biologic and any help or advice if its effective.??

Thank you all in advance....this has been a terrible year for me and I'm at my end with the pain and swelling. Rant over x

[Hidden]

No idea about orencia but you really have had a tough year . So hope this is the one x

[Ms-D in reply to Hidden]

Hey hun...its been a year I want to forget but guess what....im doing my Christmas shopping....I was so ill last year with covid that Christmas got ruined so this year I'm getting prepared in advance....I know what you're thinking 😏 lol 😆

[Hidden in reply to Ms-D]

OMG I started today .. what saddos 😂😂

[Ms-D in reply to Hidden]

Awesome so I'm not alone...woohoo

[precious123 in reply to Ms-D]

No your not. I have worried so that I would not have mine done I actually started in jan. Lol

[Ms-D in reply to precious123]

Wow I like that thinking. I was watching Christmas movies 🎥 on TV in July lol.

[Moomin8]

Hi 🙂 I haven't had this biologic, but I'm pleased that you are going to have a different one. Hopefully it will be a positive experience, I've heard a lot of good things about this biologic.

[Ms-D in reply to Moomin8]

Hope so fun. Idacio was awesome for a few months then boom....it gave up on me....

How are you?

[Moomin8 in reply to Ms-D]

So so, thanks 😊 I'm having a positive summer - gyming, swimming and learning to play golf. Not doing any housework though 🤣

[Ms-D in reply to Moomin8]

Sounds fun. I am doing online Christmas shopping. I've scaled back this year so only a handful of gifts but I love buying things that are personal to the person im giving them too x

[Moomin8 in reply to Ms-D]

Wow! I'm impressed!!! 🎄 🎅

[Ms-D in reply to Moomin8]

I think I have way too much time on my hands lol 😆 two more weeks before school starts

[precious123 in reply to Moomin8]

Who cares about housework when you feel that good. So happy for you. I have not felt that good in many years.

[rounder]

I take abatacept and thankfully it has worked really well for me, I even had a few months of complete remission though sadly it didn't last. By and large it's the most effective medication in almost 20 years of RA. My bloods are always ok with it, and side effects have been minimal.Hope you get along with it and it helps.

[Ms-D in reply to rounder]

Thank you so much. Thats a relief to hear x

[Biofreak]

Orencia has been great for me but we're all different. I hope it does the trick for you too. I don't find the injection painful but I've been doing them for a long time so I'm used to it. The pens are quite thick so easier to grip and hold steady. Good luck.

[Ms-D in reply to Biofreak]

Can I leave it out longer than 30 mins or is that the time allowed? Idacio pen was easy to hold and wasn't as painful as quite quick to inject.

[Biofreak in reply to Ms-D]

I haven't left it out of the fridge longer than 30 minutes except once by mistake. I still used it though and it really didn't feel any different than when it was out for only 30 minutes.

[KittyJ]

Does it say in your patient information leaflet that it mustn’t be left out for more than 30 minutes? On Orencia.com it says to allow it to warm up before injecting not that it can’t be left out longer. My biologic says the same and I leave it out for an hour before. I would double check it.

[Ms-D in reply to KittyJ]

I was told by pharmacist not to leave it out for more than 30 minutes. Will ask nurse when I get to book one. Hope you are well x

[KittyJ in reply to Ms-D]

Of course it may be different as it’s a different biologic but never hurts to check 😊 x

[Hessie5]

Hello Ms-D - I am on this biologic since 2019. No real issues - just not hitting the spot on oh right hand but all good. After seven biologics - I haven't the energy to start again, to be honest. I am praying long may it last. Now I was told to leave out for 50 minutes 😬 which I have always done - oh dear! Not sure what that implication means, having read the responses.

It’s easy to use - I inject top thighs and tummy - change areas.

I hope it works for you- feel free to reach out if you have any other questions. -Hessie 🙂

[Ms-D in reply to Hessie5]

Thank you for replying. I've always been told not to leave biologics out for more than 30 minutes but have left then out fir hour as they flipping hurt when cold.

Do you need to press the injectapen for long as Idacio was quite quick but benepali was 15 seconds but for me it was 30 the way I counted super fast. Who would say I am a teaching assistant in year 1....😆

[Biofreak in reply to Ms-D]

No you don't have to hold it in. You just press the button once until you hear the click and the pen does the rest. You don't have to keep pressing the button.

[Hessie5 in reply to Ms-D]

Hi - I have always left mine out for 1 hour as that is what I was told - isn’t it odd how we are all told different things.

I was also told to hold and press after the click count up to 15-20 seconds and release. To be fair there are instructions I would follow that - I shall take another read 🙂

I hope it works for you do keep us posted.

Take care,

-Hessie

[Ms-D in reply to Hessie5]

I appreciate all the support my lovelies. I feel less anxious now. You would think I've never had biologics before. I think I need to focus on my Christmas shopping than being in pain....have a lovely day my sweets xxx

[Hessie5 in reply to Ms-D]

I would be more anxious about Christmas and hoping the supermarkets have food as now there is a shortage of hauliers they are doing a big drive to recruit women 😁

All the best to you 🙂

[Neonkittie17]

I haven’t sorry but I’ve been told I should switch to it too from Rtx. Not just yet but later in the year. I’m doing some research at the mo.

[Ms-D in reply to Neonkittie17]

Hey my sweet, how are you? Long time no hear. I miss you x

[Neonkittie17 in reply to Ms-D]

Hi there sweet Ms-D 💗 I just saw your post. How are you? How’s it going on Abatacept? 🥰

[Ms-D in reply to Neonkittie17]

Morning my lovely. I have been on Orencia for almost 7 weeks now and its working okay. Not jinxing it lol. How have you been? Work has been crazy with lots of kids off ill and coughing and sneezing all day long. They can barely keep awake. I wish parents could keep tiny children at home when they're so ill as its horrible for them. Oh well. I finally did my Christmas shopping online. Couldn't risk going out as everywhere is mental and no one really wears a mask anymore so its a risk. Had to wait out the petrol fiasco too x

[Hidden in reply to Ms-D]

Great new things are sounding more positive 🤞 yep work crazy alright . So many children and teacher off with illnesses. With reduced staff it’s bloody hard . Hope things keep going the right way xx

[Ms-D in reply to Hidden]

Thank youI jinxed myself yesterday as ended up in agony all day. A rise in temperature has led to me looking like a tiny baby 🐘 again. Me and my big mouth. I think in fighting an injection as swollen and in pain. Oh well. Two weeks till half term.

How are you my lovely? Hope all is well.

[Hidden in reply to Ms-D]

I’m doing ok . Like you counting down too half term . Wishing our lives away . Youngest son was 18 thus weekend.. no babies all grown up now . Hope it’s not infection. We live at the doctors at the moment. X

[Ms-D in reply to Hidden]

Happy belated birthday to your son. All the best people are Librans lol. I say as its my bday soon 🤗

Roll on half term

[Quilter69]

I have been on Abatacept for a couple of years and it is working much better than Benepali and blood tests are ok. I always use Emla cream on the skin for an hour beforehand which does numb the skin, which makes injections more palatable. There is no sting with Abatacept like there was with Etanercept and Benepali.For me, I often have a headache the day after and sometimes feel tired., but not every week.

[Ms-D in reply to Quilter69]

Thank you for replying. I feel better knowing so many of you have shared experiences with me. I am happier ☺ now.

[Fra22-57]

I too am on Abatacept .Ist biologic to start working for me.this is my 4th and it does work well.I have to leave it out of fridge for 30 mins before inject.Been on it about 3 years now.When travelling I use a proper cool bag with side wallets to hold freezer bags.This I got from same supplier who delivers Abatacept.Some times they do leave me critically low..I don’t have next one.I do find you have to hold it firm into you else loosening grip makes it jump out.did that last time n liquid came out.I must say before I got the cool bag I did travel short distance in winter without cool bag then put in fridge on arrival.Also on long distance..flying the ice packs had melted.all was ok thou

[Ms-D in reply to Fra22-57]

I appreciate this. Will definitely as the guy for a cool bag as I travel to my parents in South London and traffic can be challenging so will defo need that. Have a great weekend. Appreciate all the love my sweets xx

[bienassis]

Can't help on Orencia, but with the biologic Inflizimab I take it out of the fridge about 1 -2 hours before injecting. I was told to take it out at least 30 minutes before injecting.

[Ms-D in reply to bienassis]

Thats awesome. I think I usually used to take our previous ones out 30-45 mind before hand but last few times its been an hour and its been less painful. When its been cold the sting is omg painful lol.

[bienassis in reply to Ms-D]

When I was first prescribed the biologic injection, a nurse from Healthcare at Home visited me to instruct my husband how to give the injection. The "pens" had been delivered a couple of days before the appointment and were in the fridge. I spoke on the phone with the nurse and she advised taking one pen out about 30 minutes before in order to make sure it had reached room temperature by the time she arrived.

Well, she had a long drive to get here and it was well over an hour before her arrival. This worried me no end. But she reassured me that the timing doesn't have to be that exact - the crucial thing was that it had reached room temperature before injecting. Obviously, if you have an overheated room that won't take so long as in a cooler room.

I suppose that particular day by the time she had explained the medicine and gone through a "dummy" run with my husband - how to hold the pen, about the "click" and counting to 6 - it had been out of the fridge well over the hour. She wasn't the slightest bothered.

The important thing is the storage in the fridge plus time to get to room temperature before injecting.

Good Luck!

[Ms-D in reply to bienassis]

Thank you so so much for your message. I am feeling happier knowing so many have tried the biologic and its been working so far. Have a love evening x

[lucymead]

Been on Orencia 20 weeks now and it is Brilliant. I have been on 3 other injectable Bios this doesn't sting . it started to work about 3/ 4 weeks in and has gone from strength to strength. I had such a bad time with worst pain ever before they tried this. I can now do everything that was impossible before.

[Ms-D in reply to lucymead]

Thats reassured me lots. Thank you so much x

[Ms-D]

Thank you. I appreciate the advice. Everyone's been so great. I was on benepali last April but around September last year it didn't work as well then switched to Idacio. Again from October to April it worked then gave up on me. Hoping this is the one. I didn't know biologics all differed in the ways its aggressive. I assumed they all are strong to some degree.

[Empress30]

I've been on it for five weeks now. I was on Xeljanz but it made my white blood cells low. I went straight to orencia and feel the same. The thirty minutes is just fine. Xeljanz did a good job so I'm glad I feel the same so far.

[Ms-D in reply to Empress30]

So glad to hear its working for you. I know its all a game change for people but not everything works right. Im keeping my fingers and toes crossed this one works.

[Empress30 in reply to Ms-D]

I hope it works for you as well. I have tried so many. Lots of luck!

[Pasjc]

I've been on opencast for nearly 2 years it works well for me good luck xx

[Ms-D in reply to Pasjc]

Awesome thanks you for replying. Hopefully the sting isn't too painful lol 😆

[Pasjc in reply to Ms-D]

I have never had a sting i take it out the fridge only 15 mins before I use it I put it in my stomach using opposite sides honest never had a problem im sure you'll be OK xxx

[precious123]

Hey Ms-D sorry to hear you have had a rough year. I have taken orencia two different times. Years apart. Never worked for me either time. But you really can’t go by my opinion because I have failed so many things and tried most of them twice. Most I ever get out of any I have taken is maybe a year or two. Most of them only 6 months. I hope that orencia works well for you. I know it does for lots of folks. Good luck my friend. I hope your year gets better. Hugs Peggy

[Ms-D in reply to precious123]

Thank you for your kind words PeggyI'm feeling a little less anxious as so many people have made me feel at ease today. Hope you are having a lovely weekend x

[Harrypotter2930]

I have been on abatacept for 6 years alongside metoject and I am completely pain free, and have been for the last few years. There have been times I have left out of the fridge for over an hour after forgetting about it, still injected it though. Hope this helps.