lemma health

I’ve just been told I need to exit my JAK inhibitor clinical trial because it’s not helping my skin, it’s making it worse, and I’m getting repeat staph and E. coli skin infections. A month of no meds, 3 months of unluckily getting the placebo, and 2 months of the real drug all down the drain. This is my third skin infection in 3 months. My options now are either pay $1000 a month for dupixent, or try a different immunosuppressant. I’ve been on Mycophenolate at Cyclosporine before, had to increase dosage to unsafe levels to see any change in my skin. My derm suggested trying Imuran (Azithioprine) while she tried to get dupixent for me on compassionate release- the odds don’t look good though, as Sanofi’s compassion program ended 6 months ago. First thing is for the next two weeks do a hardcore skin routine- daily bleach baths, 1 week course of antibiotics and 2 week course of oral prednisone. My clothes are sticking to my skin. I’m so sick of being in pain. I’m so sick of not being able to sleep. Im so sick of spending half of my paycheck on meds. Im so sick of washing blood and ooze off my clothes and sheets every day. I’m just so sick of everything right now. Please don’t suggest more creams or supplements or natural oils. This has been my life for 27 years, I can guarantee you I’ve tried it. Please just let me know I’m not going crazy and it will get better.

I have atopic dermatitis and have flares on my whole body every 3-4 days. This has made me stay at home all the time affecting my lifestyle. I have tried immunosuppressants in the past but i would always catch infections or my asthma attacks would increase. I recently started taking them again .My doc suggested I start them again since corticosteroids (which i was taking frequently to be "normal") has harmful side effects. Does anyone have any experience taking immunosuppressants? If yes, what did you take and was there a particular routine you followed?

Hi - I am in the washout phase for the Phase 3 clinical trial of Rocatinlimab (a new type of medication for severe AD). All of the following have stopped being effective for me: Imuran, Dupixent, Rinvoq, Cinbinqo and Cyclo, which is why I am so excited for something new and different. I went off cyclosporine for this trial, been off for over 2 weeks and while it wasn’t fixing my eczema it was definitely doing something. I am now in full head to toe flare, weeping extensively with the shakes which makes typing this hard. It’s erythroderma - had it once before, but was given a steroid shot and put on cyclo. My resting heart rate and blood pressure are up, but had a very good starting point, so in the normal range still. Prick and Patch testing haven’t found the culprit, I am watching my diet and going out very little. My weeping doesn’t appear to be infected but I am putting Muprirocin on the worst bits just in case. I am living on 2-4hrs sleep a night unless i can sleep in and then i might get 6 hours. My body temp is up but not in a fever state. I need to hold out another 10 days to get the loading dose, but obviously I need to be realistic about pulling the plug if it’s going to cause permanent damage. Can kind Redditors share when they threw in the towel and went to ER/Urgent care and if you were ever told of any long term effects of letting eczema get totally out of hand? TIA.

Hello I'm struggling to find people who are on azathioprine (imuran) for eczema. Background: I'm Chinese by blood, born in Malaysia and now living in Australia. Eczema only really started when I moved to Australia at 2 years old. It grew worse during my puberty years and now my entire body is covered in it except for my feet (lucky buggers). I understand stress, diet and climate are crucial factors for eczema. My eczema was so bad that my GPA referred me to a private derm who put me on Cyclosporine. I was on and off this for about 2 years but it stopped being effective so now my derm has prescribed imuran for me. I'm 5 weeks in and it's suppose to take 8 weeks for the med to kick in. I am still shedding lots of skin although I don't have the intense burning heat sensation inside my body. The itchiness is definitely still there. I am also taking daily health supplements. I am struggling with depression as I am literally vacuuming my skin from the bed and the floor every day. Why does the skin shedding happen and can I stop it? I've stopped TS on my body but am using it on my face just to function at work. I have your typical elephant skin and my skin is so prickly and sensitive (mini electric shocks) on most days. The skin shedding only occurred when I was on Cyclosporine 2 years ago and it has not stopped. If anyone is using imuran or has experienced long term skin shedding or has healed from the skin shedding please give me more info. I've been reading about gene repression but I'm still lost. Finally, has anyone been on imuran or an immunosuppresent and come off it eczema free? If so, how? I am trying to change my diet (gluten,dairy and egg free) and lifestyle whilst on imuran HOPING I don't need to be on it in the future. Why? Because I don't feel like I'm myself anymore. It's hard to explain but I won't digress any further. UPDATE: Hello, eczema warriors. I'd just reinstalled the app and re read some of your replies and replied to messages I'd missed. It's been one year and I am proud to say that I am CSteroid-free and immunosuppresant-free. To say it was hard would be an understatement. But I am here today and would love to provide support in the best way I can - through writing. I am thinking of writing a blog that intertwines my eczema journey and my life. If any of you would be interested in reading, click on the arrow up or drop me a message. Take care and be determined. X

32m I have had eczema my whole life , pretty much around covid my eczema went crazy . It was always tolerable but just went insane was itchy everywhere all the time . I finally got it under control but I still get red rashes all over my face which is the most frustrating cos I can’t hide it. I have been prescribed rinvoq 30mg for the past few years which has kept it somewhat under control. However I do get imuran aswell but if it gets better I stop taking it . I don’t like taking too many medicines . Whenever I see the dermatologist, I have seen 3 at the same practice and to be honest they are pretty bad , barely give me any advice and just tell me to keep taking the tablets and using steroid creams . The appointments are also expensive and very hard to get 3 month waiting period. I loathe going. Anyway I am a few weeks away from running out of a current prescription and i emailed to find out if I can get a new script , they advised they will write me a new script for $150. They never have done this before and they never advised this would happen . I am pretty frustrated about the whole experience and dont really want to go back. Has this happened to anyone else and what is your experience with the dermatologists you have seen ?

Hello! This is my first time posting on this sub but I would like to get advice from anyone dealing with severe eczema. I've had eczema since I was a kid. But this year it's gotten so bad that I've noticed spots of my eczema weren't responding to the current cream I was using. I used stronger steroids in the past and it made them go away but after reading on TSW I was afraid if I went stronger I would become dependent on it. (I was also using the less strong cream very often and slathering it on, so I assumed that I must be going through TSW. Or possibly I am or maybe I let my eczema get way too out of control). I stopped use of Elidel on my face 3 months ago and steroids for my body 2 months ago. My entire body flared angrily, I've never been in so much pain in my life. I tried NMT and tried exercising but it got to the point where behind my knees have torn and it hurts to get out of bed. I've never had eczema so bad and painful, I'm left in tears trying to do daily tasks and trying to sleep. I have eczema pretty much everywhere on my body except my scalp. This morning I caved. I haven't had a good nights sleep even with prescription antihistamines. The antibiotics for the staph infections seemed to work for my arms but behind my legs are still open and it worries me. I had to ask my boyfriend to go to the pharmacist to just grab the steroid cream (but not oral or protopic. My face is dry but not painful and I believe the .1% Triamcinolone Acetonide should be enough to make the eczema go away). This time I put very little amounts on the areas I needed most. But now I am so lost. Since I'm back to using steroids, should I use it on all areas that are affected? If I continue with my diet change and exercise while on steroids will I possibly be able to taper off it? I feel as lost as the first day I stopped steroids I don't understand my eczema at all and it's driving me crazy. I feel really sad I wasn't able to stick it through like the other strong TSW warriors and now I'm unsure where to go from here. I'm also extremely thankful to all the kind people in the TSW subreddit that helped encourage me, but I'm sorry I'm just unable to cope with this :( Thank you for anyone who reads this!!

Hello everybody I have been struggling with eczema (( severe atopic dermatitis of dry type )) since my birth covering all my body from face to legs , with all the social , mental and other health problems . In my 30 years of life , i have been in all types steroids cream , periods with oral steroids when eczema go in flare . In the last 3 years i started with azathioprine(( ,imuren))tablets 100 mg daily . It was going well, although I have never been fri of itching or steroid creams . I am using steroids cream (( mometasone 3 times per week) with some weeks go in flare of severe itching . But i could live with it , and it became much better than my childhood and teenager . Now my doctor decided to change to dupixent . Because he is thinking , that It was not the desired effect or remarkable effect of Imuren. I am really a little bit afraid of these type of treatment (( biological drugs ) . I received some information about dupixent from doctors and i searched about it. Although side effects is not so huge, but i think that it is best to continue with azthioprine , which is tolerable for me.i am thinking about alle aspects , such as it is a new medicine , not well known side effects , fertility , teratogenic, severe infections . I would like to hear from you about your experiences with both drugs , any advice , or anything that can help . I appreciate all your comments and inputs. Thanks

Hoping there is some updated feedback on Adbry/Adtralza as I know it’s new and some community members were just starting on it. I am through Imuran, Dupixent, Rinvoq, Cibinqo, and Cyclosporine, with no long term luck. Dupixent worked the longest. Hoping Adbry might be ok for a while? Please share your experiences! TY

just wanted to share a story that might help any of you feeling a little hopeless at the moment with eczema (i’ve shared some photos too) i had eczema as a very young child, not that bad (mostly on my elbow crease from what i can remember). i hadn’t even thought about it again until about 6 months ago when all of a sudden my whole face was red and patchy and scaly. just before this happened, i started dating the sweetest boy (who also happened to be my flatmate), and i hated that as soon as something good begun, i (in my mind) started looking like a monster i had numerous doctor’s appointments throughout the 5 months that followed, but no matter what she tried nothing would make it go away. the only time it would calm down would be when i was on prednisone, which i took twice for two separate week-long periods - after that was up, it would flare up again during this time, my self esteem was the lowest it had ever been. self-worth was always something i struggled with, but it was at an all-time low. i refused to go out, or even really talk to my flatmates for 5 months - i was even embarrassed for my boyfriend to see me during this entire time, my boyfriend was the sweetest and kindest person ever. he would call me beautiful, even when my face was scaly and red and i wanted to crawl under a blanket and never come back out. he would get me cold cloths and paracetamol when it became too itchy and unbearable. he never once made me feel undervalued or unappreciated because of my skin issue, and i fell in love with him even more because of that - in my mind, i was ugly, and i didn’t understand how he could keep loving me when i looked like that, but he proved me wrong on top of that, my workplace was also very attentive to what i needed at the time. many days i would call in sick because i was in too much pain, or too self-conscious to talk to people all day (for reference, i work as a barista at a relatively busy cafe, so would be talking to people all day, many of which would comment on my skin). every time i called in sick, my manager was very understanding. it got to a point where it was becoming very frequent, so i was pulled into a meeting where i was told that i could cut back my hours early if i wanted (i was planning on moving to part time from full time in about a month to start uni), and she said she had talked to another hr manager and they had found some dermatologists i could try to reach out to for further help. she did genuinely care, and i did appreciate all that the company did for me after about 5 months, 12 doctors appointments, many missed work shifts, various medications, and even a trip to the emergency room when my face was so swollen i could barely see, i finally had an appointment with a dermatologist. i was given a plan that consisted of azathioprine (imuran) and advantan cream, as well as doing regular vinegar washes to reduce dryness. i have been on this plan for about a month now, and have seen significant improvements in my skin. it does still get a little flaky sometimes, but what works for me is a vinegar wash and some vaseline and within a day or two is back to normal. i’ll be seeing the dermatologist again for an update in another month, but so far all is well. my skin is no longer red or painful, and i’ve gained some confidence back that i lost one of the most important things i found was to make sure you have a good set of people around you. my flatmates (and other friends too) were all very understanding, my boyfriend was a godsend, my workplace worked around my needs, and although i didn’t mention them yet, my parents were also very supportive with making sure i got the right help. eczema can be one of the most challenging things, especially when it’s that severe, so having people around who will love you despite it all is so valuable

Posting my story in the hope that others might also find some relief... I have suffered from extreme, body-wide atopic eczema for about seven years now. My dermatologist described my case as the worst he has seen in 30+ years of practice. I used topical steroids for years until they stopped working, and then I went through the horror of TSW. I've been on Imuran, Cyclosporin, Methotrexate, and a couple of other drugs I can't recall. Nothing worked except for so many short courses of Prednisone that I've now got adrenal insufficiency and cataracts to deal with. A couple of months ago, my dermatologist decided we should try [Xeljanz](https://en.wikipedia.org/wiki/Tofacitinib). I started with 10mg twice a day. By the third or fourth day, my eczema had basically vanished. I soon dropped down to 5mg twice a day, and my skin remains healthy. I feel like I have my life back. It's just amazing. I've noticed that if I miss a dose, that terrible old itching starts up, reminding me to take my pill. I do, and within 90 minutes or so, the itching is gone again. So far, I have no noticeable side effects from the Xeljanz. Only healthy skin. I honestly believe the phrase "miracle drug" applies here. Happy to answer questions if people have them. Good luck to all who suffer from this miserable condition.