Rinvoq question

[gnstric66]

Questions about rinvoq. I have taken it for a few years I wondered if anyone who has taken it for a few years has noticed that it is not working as well. that is the only ra medication that I take now .thanks for your input

[Bessieboo1]

I have been on Rinvoq a couple of years now and it had been working really well. It stopped working last October after I had COVID, my consultant agreed to change it but changed her mind so I am taking a medication that is having little to no effect apart from increasing my weight!!

[Neonkittie17 in reply to Bessieboo1]

I hope you can tell her you’ve given it every chance now and it’s still not giving you the required/much needed relief/results. You have been patient and waited. Did she say why, other than wait a bit longer etc?

I had similar re Humira in 2013 doing precisely nothing but it didn’t give weight gain, yet I was kept on it for nearly 5 months till I said no more. Didn’t go down well as it went against what the very senior rheumy was saying, but she was due to retire and rather disinterested, tbh. My fingers had very visible deterioration and my blood results showed extremely high levels of inflammation, as well as me coming to a standstill/bedbound. None of us should have go to that far downhill and as my current rheumy since 2015 said .. you’re so much harder to treat once you’ve gone all the way down the slope.

I hope the rheumy will reconsider for you. Is your GP aware of this?

[Bessieboo1 in reply to Neonkittie17]

I was supposed to see her in the Dec but she was ill so it was cancelled, it was then cancelled again in the February and I saw her 2 months later. She gave me a depo injection to see if that would give the Rinvoq a nudge into working again but wasn’t hopeful as it had been too long. She said she would arrange a follow up in 6 weeks and then change the meds. She sent my gp letter confirming the plan. I spoke to the nurse practitioner who sorted everything out to commence new meds to be told she was waiting!!she has been off sick since and although I have spoken to the nurse practitioner again twice she has to wait until my consultant returns to work! Really frustrating and I am struggling more and more xx

[Neonkittie17 in reply to Bessieboo1]

I’m so sorry as this is awful. I had similar when waiting 7 weeks to get in for an infusion once. Infusion clinics all full. Someone didn’t book me in. There should be cover for the rheumy if she’s on long term sick leave. I appreciate the rheumy gave you a steroid shot a couple of months ago but you need to be able to discuss re a new med if this one has let you down. Doesn’t seem it’s started working again. 🤨 I hope they get a member of staff temporarily or the rheumy is well enough to return soon.

Could you ask your GP to email the department with some intervention here, saying that you need to be seen asap for a new med discussion when she returns, so you don’t get a longer delay. Do they not have a senior registrar in the department? Sounds like they run it very lean. I think your GP needs to know it’s come to a standstill since 2-3 months and that’s a long time to wait. You should not be suffering for the rheumy staff shortages. I’d definitely ask your GP for advice on this. Good luck. 🩷

[Bessieboo1 in reply to Neonkittie17]

I have been told that my rheumatologist should be back at work next week (29th July) so I need to wait until then so keeping 🤞.

[Neonkittie17 in reply to Bessieboo1]

I hope you get to hear something soon.

[Leics]

I had a similar experience with Baricitanib it seemed to be making things a little easier and then I kept on getting infections so was having to stop start quite a lot. When I did get a clear run it did nothing. I’m also hypogamma and my immunoglobulin were at their lowest even though my immune system (or lack there of) was constantly being triggered by infection. I was only on a half dose but in the end it was changed. So if you don’t think rinvoq is working anymore you need a conversation with your consultant and may need to change. I hope it’s only a glitch and gets to work again soon but don’t hold out too long in my experience once it stops working then you have to change and that’s a long process so have the conversation now.

[J1707-]

I was on Baricitinib when I had the first covid vaccine . It was working great until then . I was taken off it. 3 meds later think I have found one that has worked . I’m now on rinvoq. JAKs work the best for me . No point taking a medication if not working especially as we can suffer long term side effects for no benefit. I think you need to be firm . I’ve been told JAKs can stop working if covid or vaccine involved . My new rheumatologist says this is very common.

Good luck

[gnstric66 in reply to J1707-]

What type vaccine?

[J1707- in reply to gnstric66]

Astra Zeno a bit I’ve had problems with them all

[Madmusiclover]

Had same with Baricitinib. Oddly on Rinvoq now but it’s what I can only describe as helping a bit. Not as effective as Bari was for me. Telephone review beginning of August.

[2678]

I have been taking it for 3 years and it has worked well for me. I had cataract surgery last year & my eyes have been bothering since. I wonder if it is not from Rinvoq. I had been on 6 different infusions which none of them worked. I was wondering if any ne had eye problems. Thank you fitzjo49