Off Rinvoq for now...determining next steps

I started Rinvoq in mid-June and I'd been on it for 6 weeks without seeing any changes (no back-sliding or negative, just no improvements either). I ceased taking Rinvoq when I came down with some sort of virus, which passed in a little over 24 hours, but I haven't restarted the medication and it's been about a week now.

Is 6 weeks enough time to have seen improvement or should I have stayed on for at least 8 weeks or 3 months? I understand Rinvoq works more quickly than other meds.

Also, I took a Fectal Calprotectin test at 6 weeks, and my count was 1000 - an increase from 700 before I started Rinvoq, which just seemed to provide further reinforcement that Rinvoq wasn't making a difference.

Should I restart Rinvoq or look to other alternatives? I've tried Entyvio (four months), Humira, and now Rinvoq. As I understand, one does not build up antibody resistance to Rinvoq, so restarting it shouldn't reduce or lessen its effectiveness.

Thanks,
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CollegeGrad85
UC dx in 2009
Ileorectal anastomosis in 2010
Now - Proctitis

Some of those improvements waned after 10 days - my stool consistency returned to watery, and urgency increased some (although the frequency continued to be around 2-3 per day).

I may restart it anyway, I just didn't expect some of the initial success to wane so quickly, but perhaps I just need to try it for a long, sustained period.

Rinvoq was the slowest biologic/JAK I have tried. Remicade and Simponi worked immediately overnight for me. Rinvoq took 8-10 weeks to work for me so it might be worth it to stick it out and start it again. My July scope showed zero inflammation at all but I was super sick in April and May on Rinvoq doing the loading dose. Still wearing diapers so not doing well. I was terrified of dropping to 30 mg since I still didnt feel good at 45 mg but the drop was ok and symptoms did not come back/worsen. The FC test worries me though since yours has worsened since you started. I feel like that isnt a great sign overall. Mine went from 1000 to 70 I think.

Haha I am well aware poopydoop. What do you prefer the third class to be called? I put it in that group because thats how my doctor and state does it. There are the 5asa’s, immunosuppressants and then the biologics/jak inhibitors but nothing up from there. We have step therapy here so all the third steps require prior auths and proof of necessity to get and rinvoq is in that class here. Some new patients may not know about the steps so that is why I elaborate. When sharing my experience, is it not acceptable to compare rinvoq to the biologics I have been on? It isn’t in the same level as imuran/6mp/methotrexate so it doesn’t make sense to me to compare it to those.

Bacon Girl said...
Haha I am well aware poopydoop. What do you prefer the third class to be called? I put it in that group because thats how my doctor and state does it. There are the 5asa’s, immunosuppressants and then the biologics/jak inhibitors but nothing up from there. We have step therapy here so all the third steps require prior auths and proof of necessity to get and rinvoq is in that class here. Some new patients may not know about the steps so that is why I elaborate. When sharing my experience, is it not acceptable to compare rinvoq to the biologics I have been on? It isn’t in the same level as imuran/6mp/methotrexate so it doesn’t make sense to me to compare it to those.

Yes biologics and jak-inhibitors are broadly comparable in terms of safety and degree of immunosuppression. Then there is the zeposia group of medicines (the ones ending in -mod) so it doesn't stop at biologics and JAK inhibitors. Agree it could be helpful if there could be a blanket term, at the same time I still see too many doctors and patients referring to the JAKs as biologics and it's important for patients to understand the difference as they work differently and come with distinct risk profiles. Also imuran/6mp is no safer than biologics (possibly less safe) yet many patients assume that it is, because it is often tried before biologics - mostly due to being much less expensive.... And then prednisone basically has guaranteed adverse effects if you take it long term but people are less scared of pred than biologics...so the step-up therapy is not really a staircase of increasing risks... (more like increasing costs..)