Orenica was mentioned to me, anyone been on it...not sure of spelling
Orenica: Orenica was mentioned to me, anyone been on... - NRAS
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
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.
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
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.
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
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.
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!
What do you mean By the Jaks?
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…
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 .
Good to hear. Thx for info. I also worry about these drugs, especially being over 65, I also take hydroxochloroquine 🤔 does make one think!
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
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.
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
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
Good to hear...thank you!
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.