Rinvoq can anyone please advise me if they have been on this drug

[Kitten15]

I have ankylosing spondylitis lupus and ulcerative colitis. I had another mri which has shown extensive inflammation throughout my spine despite being on humira for 7 months. Very painful indeed. The scan has picked up on damage to my C4 C5 disc which explains why I'm experiencing numbness pins and needles in arms and hands. I'm experiencing altered sensations in my lower leg going into my foot also. So lots going on at the moment . I'm feeling very anxious and low . Quite scared of trying another new drug but my rheumatologist has said i need to be on it to help stop the damage with the inflammation and get the pain under control. Any help with this would be greatly appreciated. Many thanks lovely people

[piglette]

I should read the data sheet on Rinvoq so you can weigh up the side effects. It is a pricey drug, over ten thousand pounds a year.

[Kitten15 in reply to piglette]

Thank you 😊

[Bon1]

Morning! I hope your experience echoes mine: absolute game changer. I too have ulcerative colitis and psoriasic arthritis (no psoriasis but the type of bone damage is akin to psoriasic arthritis so that’s my diagnosis, weirdly). Took about three weeks before I could say with reasonable confidence that “something” was happening. Now after about four months I would say I’m 95% in remission just the odd day with sore fingers. Get on it as soon as you can! By the way, humira did absolutely nothing for me either.

Bon

X

[Kitten15 in reply to Bon1]

Thank you Bon praying it's a game changer for me also x

[PMRpro Ambassador]

Hi - I doubt there will be many here as the JAK inhibitors are not used in PMR or GCA, However, they are used for ankylosing spondylitis and when something like Humira didn't work. The side effects do sound scary - but anything that cropped up during clinical trials must be mentioned if it couldn't be shown conclusively it wasn't due to the drug. If you look at any of the modern drugs they sound much the same.

They are very good at what they do and are definitely worth the try, Good luck.

[Kitten15 in reply to PMRpro]

Thank you 😊

[5031]

My sister and several friends who have different autoimmune conditions are on it and have good results. It takes bout 3-4 weeks to really kick but definitely makes a difference . They are on medical (USA-California) so don't have to pay for it themselves but they are all very happy.

[Kitten15 in reply to 5031]

This sounds good to hear I'm praying it really helps me as well 🙏 I really worry about nasty side effects incase of hair loss etc but got to give it a go as like us all on this forum we just need to try get better and help us live a better life without severe painful illnesses. Bless you all and thank you for your advice so grateful for this site it really helps everyone to vent and share their stories ❤️