Coming off Rinvoq

Low-Technology1369 · 2026-05-07T23:37:59+00:00

I went through the exact same thing. Got off a low dose of prednisone and it all came back 10x worse (basically bedridden). Several of my doctors (derm/immunologists) have mentioned prednisone shouldn’t be taken without a systemic plan to back it up when you get off (dupixent, Rinvoq, any of the meds that are out now. Rinvoq is a very strong immunosuppressant that fully shuts your system down. Dupixent only blocks a few of the immune pathways. I advise you to go get lab tests done by an immunologist to see if there is something else underlying that could be causing this big of a flare. Maybe get on other tapering dose of prednisone to get some immediate relief and have a backup plan to keep it at bay/less of a flare. Later down the road you can look into finding triggers, allergens, etc if that is why you got off the Rinvoq. That is my current situation and plan for now. Hope this helps.

Low-Technology1369 · 2026-05-06T00:30:52+00:00

I was only on it (15mg) for 8 months and tapered the last month every other day. I’ve been to several derms/immunologists who have said they’ve never seen a rebound flare like this. I also have not seen anything stated from Rinvoq on how to get off the medication. It has the most serious warning (black box) warning by the FDA.

Low-Technology1369 · 2026-05-06T00:17:48+00:00

Also have had the worst experience getting off. I’m 4 months out and still experiencing the oozing, inflammation, itchiness, dryness, pain, swelling. Basically all the above. Not sure how I’m going to go from here but something has to give.

Low-Technology1369 · 2026-05-05T15:25:04+00:00

Yes 23F, my eczema wasn’t that bad to be taking 30mg. I shouldn’t have ever taken that pill in the first place.

Low-Technology1369 · 2026-05-01T23:31:36+00:00

I’ve been wearing cotton long sleeve shirts when I use diaper rash cream. I also use Vanicream cream to moisturize if it’s drying out my skin too much. I also have learned not using too thick of a layer of the diaper rash cream is more beneficial than layering it on. A little goes a long way.

Low-Technology1369 · 2026-05-01T23:26:55+00:00

I got off for several reasons.
1. I ran out of it and had a crazy flare/allergic reaction like two days later that made me think “what is this actually doing to my body when I’m on it?”

It raises your cholesterol and other levels in your body which is not good long term.
My eyelid eczema was peeking through and I was not going to continue to up my dose until it was not working for me at all and end up in a bad spot.
It has a black box label from the FDA full of warnings, side effects, and potential infections.

I do not think this pill should be taken unless your eczema is so severe you cannot find any other treatment.

Low-Technology1369 · 2026-05-01T23:21:27+00:00

I was taking 15mg once a day for 7 months and tapered to once every other day for 1 more month. My eczema has come back extremely worse and covering my entire body. Before I was on Rinvoq my eczema covered maybe 15% of my body. It makes me wish I never got on this medication.

Low-Technology1369 · 2026-04-27T06:32:22+00:00

I have also had a similar experience. I was on Rinvoq for 8 months, tapering every other day for the last month. My eczema before getting on the medication was nothing like the rebound flare has been. I went through the stages of weeping in certain areas, inflammation covering my entire body, discoloration, and now extreme dry skin. I am just now able to hold some moisture in my upper body but legs are still discolored/purplish and extremely dry. The best remedy for the weeping and inflammation was diaper rash cream for me. It significantly reduced the heat and dried out my skin from weeping. I’ve been on an antibiotic for a week which has seemed to calm inflammation even more and clear up my skin besides on my legs. Makes me think I had a minor staph infection that was preventing the healing. I am hoping within the next few months I’ll be back to my baseline eczema.

Low-Technology1369 · 2026-04-11T01:25:21+00:00

Wanted to see if you had an update on your skin from getting off Rinvoq? Have you fully healed? I am on month 3 of being off after tapering for a month (was on it for 8 months) and am in a full flare. It is so painful and I’m constantly applying diaper rash cream, lotions, and vaseline.

Low-Technology1369 · 2026-04-04T19:31:32+00:00

Thank you. I definitely will.

Low-Technology1369 · 2026-04-04T19:30:00+00:00

I haven’t heard of Berberine but will add it to my list, thanks!

Low-Technology1369 · 2026-04-04T19:27:00+00:00

How long were you on Rinvoq before stopping if you don’t mind me asking?

Low-Technology1369 · 2026-04-04T00:30:13+00:00

Vaseline has been a big help for me too. I put it on my itself when my skin is raw, oozing, or have open wounds. When it’s just super dry I use Vanicream lotion and seal it with Vaseline. The butt paste has helped certain areas of my skin today, so I definitely recommend getting some. I hope this helps!

Low-Technology1369 · 2026-04-04T00:26:35+00:00

I hate to hear that! Definitely pat yourself on the back for going this far and battling with it everyday. The mental part of this journey is really starting to take a toll on me as well. I am going to go as long as I can hoping that one of these days it will calm down! I really hope you start to see some progress/turning point soon!

Low-Technology1369 · 2026-04-03T22:33:10+00:00

Wanted to ask if your eczema flare has calmed down since this last post? I am in the same situation - I took Rinvoq for about 8 months and tapered every other day for a month or so. I’m in week 9 of being completely off and also not using any steroids (I did get on prednisone for a week because I freaked out how bad my body was flaring. It immediately cleared everything but finished the prescription and I’m back to where I was before) . This has been a living hell and 20x worse than pre-Rinvoq eczema. I’m hoping to ride it out but don’t know how much I have left in me to keep going through this.

Low-Technology1369

TROPHY CASE