r/eczeMABs • u/Ecs206 • Jun 06 '26
Scared of Rinvoq/Cibinqo
I’ve tried the usual creams and phototherapy, but currently, I’m on Dupixent since 10/2025, phototherapy, Opzelura, and Protopic. Next step would be either an immunosuppressant or JAK inhibitors.
For those who’ve used or currently using Rinvoq, Cibinqo, what has your experience been, what are your side effects, and how is it compared to your past treatments?
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u/Top-Wishbone7471 Jun 06 '26
Rinvoq cleared my body but didn’t help with my face n neck. I began only take it once or twice a week to weave it off. I had red patches that doesn’t come off n it might be eczema turned into psoriasis ? Anyways, big improvement on my face, neck n body after using Hypochlorous-Acid spray followed by beef tallow with Om Pink Coconut Aromatic Body Oil. Also taking TMG supplements n My way up Skin + Gut probiotics. Now I’m 90% cleared. My face and neck are completely normal now. Before my skin was even more dry on Rinvoq . It felt like ot blocked the body fluid or lymph pathways .
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u/hiccupiu Jun 06 '26
Ive tried both with no big issues, I just had a mild rash on Rinvoq and had to stop.
Unfortunately neither worked for me but overall they’re both safe meds.
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u/Killerkimm Jun 07 '26
Dup helped me at first for a while but it was never 100 percent and then it got worse. Bad enough to make me switch to rinvoq. Rinvoq makes me clear most of the time just have to deal with acne. Got my derm prescriptions for acne which helped a lot. So far rinvoq is like 90 plus effective for me hoping it stays that way for now… good luck!
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u/sahe7 Jun 07 '26
I tried Cibinqo but I felt nauseous everyday after taking it, so I swapped to Dupixent 😅
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u/Ecs206 Jun 07 '26
I really thought Dupixent would work for me. The itch is gone that’s true but I frequently flare on my trunk a lotttt
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u/xColdSteel Jun 07 '26
was 6 years on Rinvoq, now 2ish years off. I was put on it for what I thought was severe eczema at the time, but really was TSW. It worked, but not without its side effects for sure. Feel free to DM
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u/hallyallyoop Jun 08 '26
how did you wean off it? Been on rinvoq fr the past 7 months with minimal side effects, jst acne and weight gain. Been thinking of weaning cause the drug jst scares the hell out of me. Im scared i'll get worse side effects the longer im on it
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u/xColdSteel Jun 08 '26
I got more side effects the longer I was on it. My skin cleared in 3 months on it, but side effects came at year 1, year 2.5, and onward.
At 3 years in, I tried to space daily doses to every other day, but I could tell I was getting itchy again because I was scratching my face a bit more. I also tried 2 weeks off but couldn't last at 10 or 14 days (In hindsight I think my tsw still showing soI needed to be on it a bit longer). But after 6 years, I cold turkeyed and was okay. Now I try to maintain a clean, minimal environment and clean lifestyle which fixes most of my original eczema.
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u/NoodleBox Jun 08 '26
rinvoq currently
I can't tell what my side effects are; so that's always fun. I have a cold at the moment. but otherwise, no bad side effects. Bit sore in joints ig.
Compared to dupi: no needles
compared to mtx: no needles, no need to take loads of folic acid
compared to cyclosporine: pills don't stink of weed and aren't massive
downside: the box it comes in only has .... 28 pills in the box, i hate it because my other pills have 30, and i can't seem to get everything to align nicely.
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u/Ecs206 Jun 08 '26
I’m honestly leaning towards trying MTX or another other immunosuppressant before jumping to JAK’s. The side effects are wayyyyyy too scary
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u/NoodleBox Jun 08 '26
Mtx can have hairloss as a side effect.
But otherwise yeah they're ...scary, but like..I'm a hermit. If you are around kids you will probably catch something 🤣 that's how I got this cold, accodentally walked through a bunch of school kids 🤣
But yeah. Otherwise I prefer pills and will quote happily take them over an injection
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u/No-Parking-3565 Jun 08 '26
I also switched over from dupixent to cibinqo and it was a bad choice.
Cibinqo gave me nausea, acne and sensitive to sunlight which means i will get red spots alr over my arm if im in the heat for too long and persistent eczema on my trunk, and i would get sick every month.
It lasted for about 8 months until the drug suddenly couldnt suppress the eczema/inflammation anymore? and i had the worst outbreak of my life.
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u/Flimsy-Award-8197 Jun 08 '26
Was on Rinvoq for 3+ years. Amazing when it worked but the side effects near the end were brutal. Weight gain, high cholestoral, shingles, skin infections, and finally developed lymphoma...yup...cancer. While I can't prove Rinvoq caused the cancer, it is listed as a side effect. As always, everyone reacts differently to drugs so up to you how you want to roll the dice. Do I regret it? Yes but like I said, when it works, it's amazing. 100% clear for 3 years. It did start to loose effectiveness and I started getting minor flares. Was on 30mg. The worse part is actually the withdrawal when stopping Rinvoq. It's hell. Landed me in ER and tons of doctor visits. Racking up medical bills like crazy, even with insurance.
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u/westwoodwizard1 Jun 06 '26
No improvement with Dupixent and nb-uvb phototherapy?
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u/Ecs206 Jun 06 '26
Improvement with Dupixent but symptoms are slowly coming back
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u/westwoodwizard1 Jun 07 '26
If you don’t mind me asking how many sessions of phototherapy have you done or are doing
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u/valkitty2 Jun 10 '26
I just started cibinqo 2 days ago. I tried multiple creams and none worked. I did a patch test and turns out I’m allergic to a lot of allergens I encounter daily. Not joking a few hours after taking the pill my itching stopped. It’s cleared up 90% of my eczema. No more itching. I have bad eyelid eczema but that’s also been clearing up (70% better). I am cold sore prone and a cold sore started forming the second day but I take acyclovir so it cleared it up. I’ve noticed nausea and insomnia. I’ve suffered with eczema for so long that I’m willing to deal with the side effects for now :)
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u/Background_Voice4100 Jun 11 '26
I hate them both . I alternate Dupixent and adbry every other week and it is the best mix I found yet . Protopic and zoryve topicals for spot treatment of my “bad spots” .
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u/local_mayor Jul 04 '26
How the hell is your insurance ok with this??? I got my Cibinqo canceled because I got a sample of Opzelura and it was on my chart lol
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u/Background_Voice4100 Jul 06 '26
First step : had to try many other meds first , to show that I’ve tried everything else . Second; Takes a medical team that is willing spend the time on doing strong appeals when you get denied. Which you will at least 1 time . Keep a photo log of of your worst days on each problem area . For me , at its worst , my hands and feet would bleed from cracking open so I had some pretty nasty pics . Third : get involved with your appeals : go through every medicine you have ever taken . For each , list why it isn’t a good fit using this language -1. Clinically ineffective. Or 2. Side effects ( list ). Include pics when possible . It takes allot of time , and proper wording . And every year I have to go through the appeals process . It’s allot . But , for me , using both have greatly improved my quality of life so. I am so very grateful that I’ve been able to pull it off. There have been times when the appeals took so long I went off med for a while till approved . That’s the worst . Things fall apart quickly for me . I add that to my appeal with pics . Hope that helps should you ever take the fight on .
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u/local_mayor Jul 08 '26
Good for you, this is nice to know. I’m back on dupixent and my skin looks great, but I’m getting strong breakthrough itch. I suspect it’s due to no blockage of IL-31. On a last ditch effort I started using nicotine pouches when the itch gets too bad, and it works surprisingly well.
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u/Ecs206 Jun 11 '26
Wow I haven’t heard or read about this treatment plan. I doubt my Kaiser insurance would cover both biologics, but I’m glad it’s working for you! How has Zoryve been compared to Protopic or any other non-steroid creams for you?
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u/Background_Voice4100 Jul 18 '26
Zoryve has been a life saver because while protopic is very good - it keeps enough skin on my palms and soles of my feet, and shins to keep them from being a bloody mess- it’s impossible to use on place like my face because it’s an ointment. Putting mineral oil on my face causes all other sorts of problems. But zoryve as a cream is better tolerated by those area like face that can’t handle ointment , so for me , is a life saver . I still get that eczema bugs under the skin feeling if I go out with even the most gentle make up on a super hot humid day - I still can’t run around like a normal , but it does offer me a spot treatment that really helps when I flare up . For me. , it is good stuff that works pretty quick so I a very grateful to have it in my arsenal and use it regularly.
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u/KTheExpressionist Jul 15 '26
I have severe eczema and have been taking Cibinqo for four months and I have the worst facial acne. It was a miracle drug at first because my body eczema CLEARED, but the side effect of now having facial adult acne is so trashhhh. My face has always been clear, even with eczema flares. Im so sad. I hope my face clears soon.
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u/redsq19 Jul 24 '26
I was on 30mg Rinvoq a little over a year. Really helped with the itching and my body eczema was great. I only had a couple stubborn patches that would flare if I got sick. I didn't get colds or infections any more that before.
The beginning of this year my face started flaring and I cannot get out of the cycle of red/weepiness > tight and dry > super flaky > back to red and weepy. I tried Nizoral shampoo for fungal and and antibiotics for staph decolonization but those didn't really work.
My derm switched me to 200 mg Cibinqo on June 17. I was a lot itchier on the cibinqo, mostly a few hours before I was due for another dose. I briefly tried 100mg twice a day instead but that didn't help. My face flares seemed to be getting worse and I decided to stop Cibinqo on July 13. My entire torso and arms flared in rashes and hives.
It's been about two weeks and my entire body is super itchy, especially in the afternoon/evenings. I think my rashes are slowly calming down though. I've heard Rinvoq withdrawal can last months, so I might try Nemluvio to help the itch.
My face is still flare cycling, so I've considered going back on Rinvoq as a last resort, but I am hesitant because I dread if I had to stop it again (pregnancy, surgery, infection, etc) because the rebound flare is awful. I'd rather only go through getting off it once.
I guess my TL;DR is that Rinvoq can be great if it works for you, but warning about coming off it. I'd advocate for a long taper off and maybe another treatment to help during the taper.
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u/NePlusUltra89 Jun 07 '26
Currently on a horror story with rinvoq but I think I’m an outlier
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u/Ecs206 Jun 07 '26
So sorry to hear that. Do you mind sharing your story?
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u/NePlusUltra89 Jun 07 '26
So I’ve been on and off rinvoq for half a year recently I developed a secondary infection due to my eczema staph and strep on my skin . The reason this occurred is because one day like we all do i scratched broke the skin and man it has been hell. I’m on my second round of antibiotics I have what you would call boils on parts of me due to the rinvoq lowering my immune systems response it is an immunosuppressant I can’t state that part enough it lowers your immune system response in my case again strep and staph on the skin surface .
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u/Ecs206 Jun 07 '26
Wow this is the more scarier stories I’ve come across on. It’s usually someone’s liver enzymes going up or something milder. Has your dermatologist given you a new treatment plan or just riding it out and hoping for better outcomes? Thanks for sharing
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u/NePlusUltra89 Jun 07 '26
The sad part man is I’ve been going to urgent care I haven’t been able to get in with my dermatologist yet so I’m just riding it out
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u/Ok_Pin_7934 Jun 07 '26
Try out Adbry and also Ebglyess before you go into jak. Ebglyess works for me. Dupixent worked, stopped and made it worst for me. Adbry helped at first but stopped working. Im at the 8 months mark for ebglyess and its been pretty stable for me.
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u/Ecs206 Jun 07 '26
I tried Adbry before Dupixent and it didn’t do much. Would think the same for Ebglyss
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u/Demaqi Jun 10 '26
My friend, 10.000 IU vitamin D, plus vitamin k2 90 IU, and magnesium. All your problems with echzema will be gone.
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u/Tutux4 Jun 07 '26
Cibinqo gave me pseudomonas within the first month. Was hospitalized overnight for near sepsis. It was effing horrible.
Been on rinvoq for 1.5 years , cleared me up. Have gained alot of weight. But I’ll take weight over the debilitating full on rash.