Orenica: Orenica was mentioned to me, anyone been on... - NRAS

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Orenica

Rainyda profile image
36 Replies

Orenica was mentioned to me, anyone been on it...not sure of spelling

36 Replies
sylvi profile image
sylvi

Sorry i can't help you . xxxxx

Rainyda profile image
Rainyda in reply to sylvi

👍

KittyJ profile image
KittyJ

if you put that or abatacept into the search box and filter for NRAS then all the posts about it will come up. 🤞🏻for you

Rainyda profile image
Rainyda in reply to KittyJ

Thank you!

medway-lady profile image
medway-lady

Yes for a year as the Etanercept gave me a lot of UTI's. Had temporary side effects but did go and it does work but not as well. However I've got Discoid Eczema with it, so far it is ok if it gets worse though it'll have to be stopped again.

Rainyda profile image
Rainyda in reply to medway-lady

Thank you!

Otto11 profile image
Otto11 in reply to medway-lady

Hi I’ve developed what may be discoid eczema too. I’ve had scrapings & now biopsy which shows drug induced. The Dermatologist’s at my hospital are discussing me at their MDT this week & then will move to joint Rheumatology/Dermatology clinic. Mine are quite large & very itchy. Can I ask you what they have suggested to put on yours. I have Clobetasol cream currently. They are increasing daily atm. Some about 2in in diameter. This is my 4th Biologic & with having lung issues caused by RA it leaves me with less options. Getting concerned 😟 x

medway-lady profile image
medway-lady in reply to Otto11

I was given a mild steroid cream and a greasy horrid lotion which was also to be used as a wash. I dropped a bit and fell on it and broke my leg in two places. On a none slip shower base! On my sisters advice I tried Clinique body butter as a cream and the same stuff as a body wash and it did really help. I've aldo used Aveeno which is cheaper and at the moment it is OK. My skin reacted after the start of Orencia and at the same time I had had the 6th jab and cught covid too. It could have ben any one of those things so the Orencia was stopped and restarted and tbh its not been so bad since. I'm reluctant to change as although this is my 2nd Biologic I can't have the next stage medications because I've had RA related blood clots. I'll just wait and see. My skin is not so much itchy as dry and red and blotchy. The body butter really helped and worked much better that the NHS stuff. I don't use any soap now and only Fairy washing liquid and conditioner too. I mention my sister as she is a nurse and got a dreadful amount of eczema after getting covid in 2019 she saw a dermatologist who advised her and my rash looked like hers. So might be worth a go ? and I don't use the steroid cream now either. My skin looks a lot better. I wonder if the Orencia simply dries out the skin so much it affects it allows problems to happen in my case it was worse on my upper arms and legs but didn't tie up with the injection site.

Otto11 profile image
Otto11 in reply to medway-lady

Thanks for your reply. I'm so sorry you broke your leg. That's awful. Poor you. i hope its healed now. I inject in my stomach & no rash at that site. Mine started on my back which I thought was a solar keratosis & went to a private skin clinic to have it looked at. They froze it which obviously didn't help at all. I have Doublebase Gel on prescription which is good for moisturising as I've always had excema but mostly hands & inner elbows. This is different. I have about 8 circular areas on my back ,one on my arm & two on my leg & a large circular area on my hip but also behind my knees, which to me sounds like excema. I will wait to see what they decide. I guess but like you am reluctant to stop my biologics. I had to come off Humira after 12 years of it working well as it caused Pustular Psoriasis of my nails. If its not one thing its another!! x

Rainyda profile image
Rainyda in reply to Otto11

Thanks for info!

STILL-I-RISE26 profile image
STILL-I-RISE26 in reply to Otto11

yes Iam going to start Orencia also because I am running out of options. I have been first on Metho, then biosimilars Etanercept, Humira, which all caused liver pain and strangely my teeth have been giving me a hard time. Pain in my gums, decaying, fillings, tooth pulled, more feelings coming. I also had a shot of Simponi that I had a very bad reaction to. Iwas so sick, had the shivers and a fever in the middle of the night. I as so sick, when t to Emergency room they did tests and everything was ok so they know it was from Simponi. The first week was terrible. Total Effects lasted a month. So now I am scared what’s next. I can,t take the infusion because I have such scar tissue from spending 1.5 years in the hospital for a illness. The nurses have a terrible time getting a line on me. So Iam hoping Orencia will do the trick for. The Jaks have a black box warning in Canada and they won,t allow over 65 to take it due to higher level of bc, heart attacks, lung cancer , blood clots. So I am scared.

Rainyda profile image
Rainyda in reply to STILL-I-RISE26

Sorry to hear you going thru so much, hope it works for you. I'm in Canada and well over 65, Rhumy recommended it to me? renvoq didn't work for me due to side effects. I hate trying biologics, also tried embrel. Time will tell, I haven't started it yet, had first call yesterday, sayin someone will call re consultation. I will have lots of questions. Thanks for the info...Keep the faith!

Rainyda profile image
Rainyda in reply to STILL-I-RISE26

What do you mean By the Jaks?

STILL-I-RISE26 profile image
STILL-I-RISE26 in reply to Rainyda

Jak inhibators, Rinvoq is a JAK

Rainyda profile image
Rainyda in reply to STILL-I-RISE26

Thank you!

Otto11 profile image
Otto11 in reply to STILL-I-RISE26

Will keep my fingers crossed it works for you. x

RAexperiences profile image
RAexperiences

I’ve been on it a couple months. If I inject in my thigh it scars. Makes a circle of lighter skin (I am olive-skinned). Not sure of it’s efficacy yet. I tore ligaments in my knee and wonder if the physical trauma caused an RA flare. Recently got a very large swelling in my armpit, swelling behind my knee and smaller swelling in left armpit too. Painful. No idea if it sn RA flare Or side effect of Abatacept. It’s all a bit of a mystery and too early to tell I think. Wondering if it’s causing sinus issues…

Rainyda profile image
Rainyda in reply to RAexperiences

Thank you for info!

RAexperiences profile image
RAexperiences in reply to Rainyda

my pleasure. Best wishes

Tizi profile image
Tizi

It's been a game changer for me ,I have had some skin problems but it's definitely helped me ,I don't like injecting it though ,the liquid seems quite thick ,but worth it for the benefit.I do worry sometimes about the poison I'm putting into my body though I'm also injecting methotrexate as well .

Rainyda profile image
Rainyda in reply to Tizi

Good to hear. Thx for info. I also worry about these drugs, especially being over 65, I also take hydroxochloroquine 🤔 does make one think!

Tizi profile image
Tizi in reply to Rainyda

I'm on hydroxychloroquine as well as thyroxine and others ,but try not to think too hard about it ,I'm 66 and just had my first pension payment lol .Where did my life go?

Rainyda profile image
Rainyda in reply to Tizi

I hear you! Thanks, yes...got to stay positive, once you wake up 😊

Hi I have been taking it for about 5 years, it was slowish to work, but the longer I took it, the better it performed. I have not found any injecting problems.I hope you get on well with it. X

Rainyda profile image
Rainyda in reply to Living-in-the-moment

Good to hear, thank you!

Maggieorencia profile image
Maggieorencia

I’ve been on Orencia (Abatacept) infusions monthly since 2017. It’s primary use for me is my RA but is also being used off label for my rare kidney disease (FSGS). I am doing well on it at least that’s what my labs say. I do still flare on occasion but that is almost always during a period of extreme stress. I’ve got RA I have Chronic Kidney Disease and I had a massive atypical heart attack (no traditional risk factors like arterial plaque or history of high BP). It’s called a SCAD (spontaneous coronary arterial dissection), I guess I really lucked out in the genetic lottery. Anyway, the only side effects I feel from my monthly infusions are about a day of extreme fatigue and sometimes flu like symptoms and back pain. I know it’s working from lab work but if I have to miss a month due to illness, antibiotic use etc; I find my RA comes back with a vengeance especially in the winter months. I went with the monthly infusions at an infusion clinic because when I switched to weekly injections at the start of Covid, I got the side effects just as bad weekly. I prefer 1-2 a month of feeling off as opposed to weekly. I hope you have success with this medication as well.

😊

Rainyda profile image
Rainyda in reply to Maggieorencia

Thank you, that's helpful info 1-2, I will ask Rheum. about it. Thank you!

Otto11 profile image
Otto11

Hi I’ve been on Orencia for 3 years & it’s working well. I developed a rash in large circles in various places the biopsy shows it’s drug induced so waiting to find out what next. I really don’t want to come off it as it’s working well. X

Rainyda profile image
Rainyda in reply to Otto11

Thank you, sorry about the side effect.

JJJA profile image
JJJA

I’m on orencia also known as Abatacept infusions every 4 weeks for about 6 months now and it appears to be creating positive results for me so far

Rainyda profile image
Rainyda in reply to JJJA

Thank you! 👍

Rainyda profile image
Rainyda

Good to hear...thank you!

Harrypotter2930 profile image
Harrypotter2930

Been on it for 4 years now 125mg weekly click pen worked good for me I am now in remission so going to be weaning of in the next few weeks I'm 70, hope you find it helpful.

Rainyda profile image
Rainyda in reply to Harrypotter2930

I got my delivery yesterday, been having second thoughts?? Thank's so much for your positive comment....I needed it! Glad it worked for you...take care!

Harrypotter2930 profile image
Harrypotter2930

Glad to help hope it works quickly for you x

Rainyda profile image
Rainyda in reply to Harrypotter2930

👍🤞