I’m trying to find out if anyone has been taking Rinvoq .
My cousin has severe RA but doesnt have the internet so is unable to find out any thing about it or get any help from someone who has been taking it .
It seems her RA team think it’s the only avenue left for her to try .
She recently had a very bad flare up with swollen fingers .Terrible painful stiff wrists and one terrible deformed elbow .So as she lives on her own she’s finding it difficult to manage .
Also her bloods have been bad for some time
I would appreciate any advice that I could give her .
She has got to have a shingles vaccination before she starts too .
Thank you
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Midfielde
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It has been a life changer for me. No pain, no fatigue, I am back (almost) to my old self. I had to go off it because of some blood test results (white blood count and neutrophils dropped) but went back on it because of how good it was after discovering that my blood work goes up and down quite regularly. It did give me nausea for a while, but so did everything else.
Everybody responds differently as helixhelix noted, but if the RA team think it is the only option it is definitely worth trying.
I’ve been on it aboit four months- absolutely amazing at first although bits and pieces creeping back now in terms of pain. Nevertheless it’s helped me reduce my steroids which I haven’t been able to do since I first got sick years ago. Definitely worth a try!
Brilliant for me as well, I find it works best if I stay on a half dose of subcutaneous methotrexate (10mg currently). Now I have to try and recover from 2+ years of pain and immobility with associated deconditioning, and 25kg weight gain. Still finding it an uphill battle, but at least the soul-crushing pain has abated significantly
Yes, I am on Rinvoq, its brand name, which is much easier than saying Upadacitinb!
It is a JAK Inhibitor taken as a pill once daily. That in itself is so much easier than many of the treatments we take to suppress RA. JAK Inhibitors are a recent development and a much more targeted treatment.
As helixhelix said, and like so many of our treatments, it is wonderful for some but not for a minority. For me, it is nearly effective. My disease activity is significantly reduced, and my consultant has added sulfasalazine to work with it. Early days yet, but encouraging results so far now I have become used to the drug. A few side effects from sulfasalazine, but they appear to be fading.
I am also a long-term RA patient with few options left, if any, but Rinvoq has helped me a lot. I sincerely hope the same is true for your cousin.
Been on it for almost two years, did initially continue to take methotrexate too, but found that continued to upset me. Now only take rinvoq and total game changer. Only drawback for me is I forget I've got RA and often overdo it, but small price to pay since gettingy life back!!!
I have been on Rinvoq for 8 months and I personally feel it has been the best drug for me in the last 14 years. Although I still have pain and get tired it isn’t a debilitating. I hope that your friend gets on ok.
I'm sorry to hear about your cousin. Lots of useful information above from those who have already tried it. It's a JAK Inhibitor so one of the newer medications. We have some information on them on our website nras.org.uk/resource/jak-in... and in our Medicines booklet. However, if you or your cousin want to talk about it more on the phone, do give the Helpline team a ring on 0800 2987650 or email helpline@nras.org.uk
Really hope it works for them and do let us know how they get on or if you need anything else.
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