Upadacitinib (Rinvoq)

[Durrell]

Hello to fellow sufferers I do hope your finding some rest for a Sunday.. I’m just interested to hear of anyone who maybe on upadacitinib. I understand the nhs has been using it since 2019, just interested to know if anybody is, how they are doing, feeling etc on it ... 🙂

[allanah]

Hi. Nice to hear from you. Unfortunately I dont know this drug. How have you been on it?

[Durrell in reply to allanah]

Morning thank you for your interest, it’s a once a day tablet, but like all these drugs they have concerning side affects, I really struggle with the dampening down if our immune system (although understandable) but to be constantly at risk of infections is bewildering... I was hoping someone in this community Is on it & could say how they are feeling etc on it....

[Leics in reply to Durrell]

I hadn’t heard of Rinvoq but I believe it’s a Jak inhibitor rather like baricitinib which I took for a year. No side effects from it at all and it really helped my R.A. I’m already severely immune suppressed but was taking low dose antibiotics at the same time which didn’t suit me but I managed to stay infection free until last year when unfortunately I got one infection after another chest, sinus and throat. I wouldn’t worry too much about immune suppression it can be sorted with antibiotics if necessary and the drug doesn’t stay in your system for very long but that doesn’t mean you will automatically go right into a flare if you have to stop them because of infection. As long as you take precautions and keep away from anyone with cold symptoms hopefully you’ll be fine and they’ll work very well for you. Good luck I hope they’re very good for you and work well.

[Durrell in reply to Leics]

Thank you For your reply, very informative & helpful, only been on just over a week now & begining to feel some benefit!! So fingers crossed 🤞

[Leics in reply to Durrell]

Yeah I found baricitinib worked fairly quickly it did take me about 3 months before it sorted most of my inflammation out but I was only on 2mg instead of 4mg because of my immune system issues and it had a lot of work to do regarding inflammation. There are lots of people on the forum using JAK inhibitors and they’re very successful for some I did find it to be the best treatment I’ve had so far it’s a pity I wasn’t able to remain on it but that’s me. Hopefully you will find it very good without any issues at all it sounds like you’ve made a good start. Fingers crossed it continues I think if you were going to have side effects you’d have had them by now but remain vigilant with the winter coming up however with Covid around I’m sure you won’t be getting close to anyone with flu symptoms anyway.

[Durrell in reply to Leics]

Thank you both for your valued input.. I was on cimzia for about 5 yrs & it worked well for me until I got an infection which continued resurrecting it’s self & due to stopping the treatment several times it sadly became less affective!! I’ve since tried imraldi plus several others which didn’t work for me or I had side affects. So like many of you In similar positions I’m preying this one will work for me!! I am now looking at working with a functional therapist, I find following the RIP diet is initially tough but I think with professional help this could well be a path I’d like to at least try..

[Moomin8 in reply to Durrell]

Hi, I have read your reply and it resonated with me. I too did well on Cimzia. I'm currently still taking it until my next rheumy appointment, but since I had to stop it over last Christmas - due to a chest issue - it hasn't been as effective and I have been flaring for nearly a year now. I'm not sure what's coming next, but my hands, shoulders and feet are the worst effected.

[Durrell in reply to Moomin8]

Hi Moomin8

Interesting your experiences, like mine. it’s such a shame when these things happen as the drug itself shows such effective benefits, I’m extremely sad I can no longer take it as I had no side affect at all & truthfully returned to a normal life as I knew it!! . Just make sure you continue to try with treatment plan, don’t give up, we are all scared of our drugs but our RA condition left untreated can cause havoc with our bodies, so take the greatest care of yourself

[allanah in reply to Durrell]

Hi well I've been on various biologics since 2011 and only had 1 severe infection. You get blood tests monthly to make sure you are not overly immuno suppressed so it's not as suppressed as say they would like in a cancer. So normal hygiene is fine, hand washing etc but if someone in the family for example had a cough or cold or flu they wouldn't visit. I would move away from someone in a restaurant who was coughing.

Even more so now with covid, but in normal conditions it's just a case of being careful and watching what you eat eg shellfish.

So good luck, biologics saved me!

[Durrell in reply to allanah]

Sorry Allanah I should replied before now, but thank you so much for your informative reply ref to upadacitinib. Alas I’m already off it as caused breathing problems so I’ve now gone back to biologic injection, started Monday & it’s already showing improvement which is really positive, long may it continue 🤞, but thank you again, I find this little forum so helpful, kindest regards, hope your enjoying your weekend 👻

[allanah in reply to Durrell]

Well that's really good your sorted. Yes it's a friendly helpful site I find xx

[Green230461 in reply to Durrell]

Hope this works for you this time 😃

[Flipper12345yellow in reply to Durrell]

Have you gone back to a previous iv or new one ?