Orencia as. Biologic option.: Has anyone tried Orencia... - NRAS

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Orencia as. Biologic option.

khauther profile image
17 Replies

Has anyone tried Orencia? I am terrified of biologics but my RA

hass gotten so bad that I don't have a choice.

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khauther profile image
khauther
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17 Replies
trish1957 profile image
trish1957

Hi I started on this after other biological failed. This week five for me but so far no problems. Fingers crossed this will work for me and you if you go ahead.

I was very apprehensive about injecting but I didn't really have much choice

Trish

Lomo1964 profile image
Lomo1964 in reply to trish1957

Hello. Can I ask I am recently diagnosed with ra and wanted to know why most people are worried to take biological drugs. Do you have to inject them and is that what worries people x

farm123 profile image
farm123

This is my current saviour together with 200mg hydroxy. It took a long time to work but I was really struggling to do anything when I started it. It was around 9 months and adding hydroxy at 6 months really improved the effect. I have had no noticeable side effects but my WBC's and neuts do run low (just under the normal range) but so far this has not caused me any issues and I have been using it for nearly 3 years with a small break for a TKR. The syringe has a needle guard (it is spring loaded) which does make it slightly harder to press down but otherwise no problems. Farm

khauther profile image
khauther in reply to farm123

What is hydroxy?

farm123 profile image
farm123 in reply to khauther

Hydroxychloroquine. It is a drug from the DMARD group of drugs which are usually used as the first line of treatment. Many studies show that biologics do work best in conjunction with a DMARD. My body does not like DMARDs (except this little amount of hydroxy) and I have less problems with biologic drugs than I had with DMARDs. Farm

TerrilouiseS profile image
TerrilouiseS

I wonder where the fear comes from just out of interest?

I take a biologic as I had no other option either. I did find that the side effects of Hymira were absolutely minimal compared to the DMARDs I tried, phew!

Life back on track thanks to biologics, I really hope your doctor gives you lots of info about Orencia so you can make the right choice for you!

Best wishes,

Terri xx

khauther profile image
khauther in reply to TerrilouiseS

My Rheumatalogist advised me of certain cancer risks and dangers from infections that your weakened immune system can't fight.

AgedCrone profile image
AgedCrone in reply to khauther

My Rheumy told me certain Biologics are not given if you've had cancer previously ...I would have preferred an injectable as in my mind if it disagrees with you, you can just stop, whereas with infusions once it's infused you are stuck with it. Unfortunately I had breast cancer so have just started RTX infusions......only yesterday, but so far so good!

I'm at the stage now where I trust my Rheumy & go with the flow. Either a drug will work for you or it won't & I have no control whatever over that.......so why worry about it?

khauther profile image
khauther in reply to TerrilouiseS

I took Humira and my liver count spiked. I had to get off immediately. Not sure if that is a side effect for Orencia. Hope not.

TerrilouiseS profile image
TerrilouiseS in reply to khauther

I hope not too! Have you started yet?

khauther profile image
khauther in reply to TerrilouiseS

No I have not, still waiting for my referral. I am 67 years old and get concerned about infections with a lowered immune system. Also, all my family members died of cancer. With these new immunity drugs which fight cancer, it might be difficult if your immune system has been lowered to use them.

Beaches2 profile image
Beaches2

I'm on orencia ( abatacept). It's been about 18 months now and I'm doing well on it. I have the weekly self inject. No side effects that I'm aware of. I'm just praying it keeps on doing its stuff.

khauther profile image
khauther

Thanks for your reply. Because I am on Medicare I have to have bi-weekly infusions at doctors office. My right ankle is partially fused and hurts all the time. Don't want the same thing to happen with the left.

Any problems with infections?

Beaches2 profile image
Beaches2 in reply to khauther

I haven't had any infections since being on biologics......2 years now if I count 6 months on enbrel ( didn't work) before abatacept.

Of course it's always a concern for us but my GP said our immune system is only slightly compromised.

I do try and keep myself as healthy as possible.....plenty of sleep,good food and exercise, and use hand gel, avoid people who are ill ......just the usual precautions, but to be honest I've sat in the office by people coughing and sneezing and I work with children and so far I've been ok........one cold/sore throat last year and it cleared up as normal.

It is worrying, I wish I didn't have to take any of these drugs, but my RA was very aggressive at the start and I needed to get it under control and get some life back.

Good luck and I hope it works as well for you as it has for me.

AgedCrone profile image
AgedCrone

I haven't tried Orencia, but I'm the same as you - very apprehensive about Biologics....but I had my first infusion of Rotuximab yesterday.......& so far so good. I have no idea how long any reaction will/might take.....but I've tried every Dmard under the sun & had horrid reactions to them........so like you I had no choice.

On speaking to the specialist nurse who administered it yesterday she said she thinks not as many people have problems as we think......it's just that we remember the horror stories, but forget that for everyone who has a bad reaction there are many who have success. After all........if too many people had bad reactions to a particular Biologic they'd stop using it! There must be some sort of regulation that if 'X' % of people have a bad reaction the drug is investigated & either tweeked until it's better or stopped altogether.

So I bit the bullet & hope I'm in the successful group! Fingers firmly crossed! Good Luck with Orencia!

khauther profile image
khauther

I do need to bite the bullet as I've had bad reactions to other treatments. Thank you for taking the time to reply.

Paulajolo profile image
Paulajolo

I have had severe drug allergies and had my 1st injection of Orencia yesterday. Had Benapali and Humira previous but allergic reactions to them. My RA is severe so I am hoping this works for me.

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