Rinvoq (Upadacitinib) experiences please!

[Bon1]

I’m on day two. Trying to manage expectations! Would love to hear your experiences with this drug especially how long it took to work or conversely how long you stick it out before abandoning it. I’ve been burnt with this before because I never really felt Adalimumab did anything but kept being fobbed off by my consultant and I think therefore spent years on a drug that was doing nowt!

sending best wishes out to you all

Bon

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[KittyJ]

if you put that into the search box and then filter for NRAS all the past posts about it will come up. I’d give it longer than two days😁

[Bon1 in reply to KittyJ]

Thanks Kitty I will. Hahah yes two days might be a bit soon to draw any conclusions 😂

Bon

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[Bessieboo1]

I have been on Rinvoq since the end of December last year. It took a good 4/6 weeks until I started to feel the benefit. This has been the best drug for me in last 12 years and it has given me some life back again. I had to have a break for 3 weeks in February as I had major hand surgery which was a shame as I was doing so well and this set me back about 3 weeks. Side effect wise I was waking with headaches but these don’t happen very often now. I really hope you get a positive result from taking Rinvoq but please give it a couple of months before you write it off.

[Bon1]

ooh thank you for this. It is very encouraging! Have your blood tests been ok? I read it can mess with your white blood cells/liver enzymes.

Bon

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[Bessieboo1 in reply to Bon1]

Hi, my bloods have all been ok and I understand that if it’s going to be a problem then it is within the first 3 months. Xx

[Mccubbin]

Hi bon1 I've been on the drug about 4 years along with methotrexate, I do still get pain , but maybe not as much if I stopped the both....I've to stay on this until something new comes out, as I've been on them all, they have ran out of options......see how you get on as everyone is different....so good luck.🙂

[Jan101050 in reply to Mccubbin]

hi did you put on weight with this drug ?

[Bessieboo1 in reply to Jan101050]

I haven’t put on any weight. Xx

[Jan101050 in reply to Bessieboo1]

thank you. 🤩

[auldreekie2 in reply to Jan101050]

I did quite a lot😭

[Angels-delight]

Hi Bon1,I have been on Rinvoq for 4 months, I saw my Rheumy last week and he was happy with the results so far, no side effects snd the swelling on my joints has reduced. I had hoped that I would have less pain especially in the morning with the stiffness.

My fingers are becoming more deformed as with the toes on my left foot, very painful.

My next appointment is in January so I will check my cholesterol etc then, he said everything was fine and keep on doing what I am doing as it is working.

A year last January I almost died and I was very poorly not knowing what was the cause. They kept me in bed for over 3 months and when I finally got out of bed I was so weak and couldn't walk. I am still working hard yo get the strength back in my legs but everyone can see a big difference in me. I just wish I didn't feel so tired all the time and if I over do things I suffer more the next day.

I am very independent and want to be able

to do everything myself. I am now living in a long term care home in Canada where they provide rehab that I need every day and I take advantage of it.

I am hoping that things will only get better for my efforts and the medication.

Good luck, hopefully things will get better for you. Take care,

Sue x