Orenica Anti TNF

[Rainbowshaker]

I was prescribed Orenica last November I have injected every week up until about 4 weeks ago when I can no longer tolerate the side effect which are itching , rashes , headache , sense of smell gone , hives , dry eyes ….

I am still struggling with the itching I am due an appointment with the consultant very soon I took myself off the injection I was fed up with the side effects. Just wondered when the itching would go ? I have scarred due to it.

[helixhelix]

do you take anything for the itching and eyes?

This is not medical advice, but I take an antihistamine every day as I got so fed up with itchy eyes and runny nose on Enbrel. So perhaps ask your doctors?

[Rainbowshaker in reply to helixhelix]

Hi

Yes I took a fexofenadine which is a strong anti histamine - it did nothing. I’m also using my husbands anti itch moisturiser that he uses for the diabetes. Nothing helped I had tongue ulcers too more like blood blisters . I had a black spot on my tongue a few weeks ago that I thought was a blister starting , noticed it again tonight while brushing my teeth I really am worried now.

[Madmusiclover in reply to Rainbowshaker]

Have you rung the helpline for advice? Or your GP?

[Rainbowshaker in reply to Madmusiclover]

Yes I rang the specialist nurse

[medway-lady]

I had drug induced Eczeama with it and it was stopped, the painful rash did go but never scared.

I think you must contact the Consultant and photograph the tongue and skin and also try your GP urgently.

[rawillbebeaten]

I started Orencia in April 2024 and it worked OK for a while, not as well as others I had to stop due to side effects, but some improvement. Over the last weeks the skin on my hands has got really sore and infected around the nails - the GP prescribed antibiotics and now a steroid/antibaterial cream. I managed to get though to my consultants secretary and was advised to stop the injections until the issue is resolved. Not what I wanted, but hey ho! Any of the biologicals take 3 months or longer to fully leave your system. I had to stop Humira in Oct 2023 and only got Orencia in April 2024. Now it looks like another change. I'm not sure if there are any other options they can offer me, which is scary and disheartening. I vowed from day 1 over 20 years ago that RA would never beat me, so I have to summon that resolve. Hopefully my appointment on 30th May will be moved forward and there is a new "wonder drug" on the market, unlikely as that is. Hopefully your consultant will be reassuring and helpful and offer something to ease your symtoms. Wishing all all the best - keep on going! Michele

[Rainbowshaker in reply to rawillbebeaten]

I honestly want to steer clear of them , the ones I tried make me itch like a flea infested dog. It’s very embarrassing the dry eyes are a problem too as is the mouth ulcers. I stopped taking the injections myself. I did ring the specialist nurse who told me to take antihistamines . Still no joy from them.

[2678 in reply to rawillbebeaten]

Have you tried Rinvoq, I was on about six various medicines before they put me on Rinvoq and it has been a miracle drug for me. I do hope something works for you.

[rawillbebeaten in reply to 2678]

I haven't heard of that - Just had a look on a site. I do take blood ressure medication, it can be an issue with increased risk of problems it seems . I will mention it at my next appointment. Thanks, good to know that there may be options. Michele

[rawillbebeaten in reply to rawillbebeaten]

I'm not sure if it's available in the UK for RA

[Rainbowshaker in reply to rawillbebeaten]

Yes it’s called Abatacept , I use Orenica as it’s easier to remember.