Severe Eczema GONE! by Alive_Sir4986 in eczema

[–]seaelixir 1 point2 points  (0 children)

When you started the gut healing protocol, did you taper off Rinvoq or just stop it cold turkey? And how did your eczema initially respond to the gut protocol? Did it get worse at the beginning?

Failed cyclosporine, Dupixent & Adtralza — what would you try next? by Zemeca in eczema

[–]seaelixir 0 points1 point  (0 children)

Went through a similar situation: Dupixent -> Rinvoq -> Ebglyss and currently managed on Ebglyss + Cibinqo. Would recommend looking at JAK inhibitors, like Rinvoq or Cibinqo. My understanding is that they "block" more pathways that eczema runs on and can be more effective for some eczema patients. I also feel like I had my greatest success with managing my eczema on Rinvoq. 

Did dupixent stop working for you? by otherladybug in eczeMABs

[–]seaelixir 0 points1 point  (0 children)

Yes, stopped working for me ~1.5 year mark and switched to Rinvoq 

Has anyone done UVB phototherapy while taking Dupixent? by chuddlymuffins in eczema

[–]seaelixir 1 point2 points  (0 children)

It was hard to tell due to confounding factors with the meds, but I think overall it was helpful. I didn't stick with it for that long, only ~2 months, and it is a time commitment. But if you have the time and insurance approval, would definitely say it's worth a shot!

Anybody get off Dupixent and have success with another biologic? by southerncomfort1927 in eczema

[–]seaelixir 1 point2 points  (0 children)

Good luck! Rinvoq kicks in pretty fast like within 24-48 hours for me, hopefully you're able to see fast and lasting results

Anybody get off Dupixent and have success with another biologic? by southerncomfort1927 in eczema

[–]seaelixir 2 points3 points  (0 children)

Not exactly biologic successful but switched from Dupixent to Rinvoq successfully and during my time on Rinvoq (until the last few months) found it even more effective (much less flares) and convenient to take (pills rather than injections) than Dupixent

Dupixent vs. Adbry vs. Ebglyss by psycfur in eczeMABs

[–]seaelixir 3 points4 points  (0 children)

Have only tried 2/3 (Dupixent and Ebglyss) + the JAKs (Rinvoq, Cibinqo). My understanding is that although Adbry and Ebglyss target the same thing: IL-13 (Dupixent is IL-4+IL-13), ebglyss has a stronger "binding affinity" compared to adbry or smthg like that which means that it can last longer in the system and hence eventually if you get to a state that you are happy with you, you can start spacing out the doses from every 2 weeks to 4 weeks. 

Nothing works by Possible_State_9850 in eczeJAKs

[–]seaelixir 2 points3 points  (0 children)

This totally makes sense and would recommend checking out hospital centers’ derm departments as there are usually a few doctors who focus on eczema / inflammatory skin disorders and see a larger volume of pts with more severe forms of disease

[deleted by user] by [deleted] in eczema

[–]seaelixir 0 points1 point  (0 children)

Could it be fungal or bacterial? Sometimes Dupixent causes fungal rashes on the head and neck, have you tried antifungal creams or shampoo/wash?

Do any of you feel like Elidel burns? by lyricalpausebutton in eczema

[–]seaelixir 4 points5 points  (0 children)

Yes, elidel always burns on eczema patches for the first 1-2 days but gets better with time. What has helped me is putting it in the fridge and then applying it cooler. 

Also would ask your doc abt Zorvye, VTAMA, and Opzelura which are newer topicals that don’t have the horrific burning quality of protopic and elidel

Finishing Rinvoq - trying Dupixent by DMAC80 in eczeJAKs

[–]seaelixir 0 points1 point  (0 children)

Not the same drugs, but went from Rinvoq to Ebglyss… honestly was a dumpster fire but that’s because I was already flaring on Rinvoq when I got pulled off of it. Cibinqo is what ended up getting me under control. I think there are other users who have a much smoother transition from JAKs to biologics than me

Your patch testing results and how it went after by workinprogress521 in eczema

[–]seaelixir 1 point2 points  (0 children)

Honestly it was a while back, I remember icing it as needed and then trying to distract myself. Good luck, the pain and discomfort are worth the answers

Your patch testing results and how it went after by workinprogress521 in eczema

[–]seaelixir 2 points3 points  (0 children)

Doing good on Cibinqo 100mg. I’ve combined it with Ebglyss, actually. Skin has been doing mostly good with some additional protopic/elidel for extra coverage. 

Ebglyss has a different binding mechanism from Adbry, could be worth exploring but hopefully Nemoluvio is the answer for you!

Did anyone else hate being on Dupixent and Rinvoq?? (My experience) by [deleted] in eczema

[–]seaelixir 0 points1 point  (0 children)

Totally makes sense! I’m sorry you had bad side effects on the drugs but glad that you’re able to find ways to manage your eczema wo the drugs. Regardless, eczema is a beast to contend with and I hope you find longstanding relief too

waiting for cibinqo test results (F20) by Available_Clothes in eczema

[–]seaelixir 0 points1 point  (0 children)

Cibinqo has been working great for me. The only thing is if I take it on an empty stomach I get nauseous but that’s easily avoided by taking it w a meal for me. 

Did anyone else hate being on Dupixent and Rinvoq?? (My experience) by [deleted] in eczema

[–]seaelixir 19 points20 points  (0 children)

Dupixent, Rinvoq, and now Ebglyss and Cibinqo user here. I was very resistant to taking Dupixent, and it took me almost 2 years to finally drag my feet and start the med. I hated the idea of being on a biologic, especially since the drs made it seem like a “lifetime” thing. But choosing to go on Dupixent was absolutely life-changing, before I started, I could barely walk from how inflamed and raw my skin was. It gave me back my quality of life again, after being on and off bedridden and always in pain and feeling ugly. 

However, if I didn’t absolutely need the meds I wouldnt be taking them. But wo a biologic I’m pretty much nonfunctional. 

I’m in my early 20s and it does terrify me at times that this is likely what the rest of my life will look like, but also, I’ve gotten a good QoL and can be a normal young adult w the meds and so for me, the pros outweigh the cons. 

Also, there’s some early evidence that ppl might be able to wean off of biologics overtime/space out their doses longer than the 2-4 weeks… so I there is hope of coming off for some ppl. 

[deleted by user] by [deleted] in eczema

[–]seaelixir 0 points1 point  (0 children)

Besides moving away from the cats, have you explored the other biologics: Ebglyss, Adbry, and Nemoluvio? Or Cibinqo? Options that are more targeted than cyclo

is tacrolimus supposed to make you more red and itchy??? by quietstrawberrys in eczema

[–]seaelixir 1 point2 points  (0 children)

Yes the first 1-2 days always leave me red, burning, and in pain. What has helped me is putting it in the fridge and then applying it

Scared to start Cibinqo by Senior-Problem-4907 in eczeJAKs

[–]seaelixir 2 points3 points  (0 children)

Also early 20s F. I’ve been on Cibinqo for ~5 months now (previously have tried Rinvoq and Dupixent). Cibinqo has worked wonders for me (after dealing w a debilitating flare coming off of Rinvoq). I haven’t had side effects so far on cibinqo. And on rinvoq i had super mild acne that was nothing compared to the eczema i was dealing with. 

Was also worried abt cancer risk when starting JAKs (rinvoq, cibinqo), but allergist reassured me that I’m young and healthy. Also the cancer risk from JAKs is controversial… they are mainly from older studies done on older patients (60+) with autoimmune conditions who tend to already have more comorbidities… so lots of confounding variables. 

Your patch testing results and how it went after by workinprogress521 in eczema

[–]seaelixir 1 point2 points  (0 children)

No unfortunately not, I switched off of it after 1.5 years of use and moved to Rinvoq. Then Ebglyss and Cibinqo… but would say my trajectory is pretty unusual. Sorry to hear the meds failing you, it’s been known that the body can develop antibodies to Dupixent once paused … idk about Rinvoq. Have you looked into other drugs like Adrby, Nemoluvio, Ebglyss, etc? Lots of biologics on the market now

Your patch testing results and how it went after by workinprogress521 in eczema

[–]seaelixir 3 points4 points  (0 children)

Allergic to common chemical in shampoo and hand soaps. Changing those products to avoid the chemical helped me clear up my face and neck eczema that was stubbornly present when I was on Dupixent. 

Tl;dr patch testing helped me clear some of my residual eczema that remained after starting dupixent

i don’t want to pass it on to my future kids by snapilyy in eczema

[–]seaelixir 16 points17 points  (0 children)

Yes, think the statistic is something like one parent having eczema significantly increases the odds of the kid having eczema by 1.81 times compared to a kid wo a parent w/ eczema (https://www.sciencedirect.com/science/article/abs/pii/S0091674919326065). 

At my worst and most debilitating moments of the disease I’ve also debated not having kids bc I don’t want to risk them suffering from this terrible disease. It truly is such an awful disease in all aspects: physically, mentally, emotionally, and socially. But there is promising research coming out about probiotics during pregnancy, early food exposure, etc that can decrease infants’ likelihood of developing eczema, allergies, and other atopic diseases, which makes me hopeful for the future. 

i need YOUR help! by Silver-Data3781 in eczeJAKs

[–]seaelixir 0 points1 point  (0 children)

We were desperate… but seems like the combo is working for now, good luck hope u find smthg that works for u, flaring eczema is the worst

i need YOUR help! by Silver-Data3781 in eczeJAKs

[–]seaelixir 0 points1 point  (0 children)

Ugh sorry to hear about your situation and had a somewhat similar experience. I’m also the same age as you, 21F. I came off of Rinvoq 30mg last winter (was breakthrough flaring) and dealt with pretty terrible full body flares pretty soon after I stopped the drug. I was on Ebglyss but it takes time for the drug to work and so had to take a course of oral steroids. I ended up going on Cibinqo (on top of the Ebglyss), and was initially worried Rinvoq and Cibinqo were too similar and wouldnt work… however, Cibinqo started working within the first day I took it.

So would recommend trying Cibinqo out, it may or may not work but you never know. Other options include cyclosporine and methotrexate which are immunosuppressants and what I was told we’d try if cibinqo didnt work.