TSW Flare Update
ฝัง
- เผยแพร่เมื่อ 18 พ.ย. 2023
- Hit the subscribe button to stay updated!
TSW content for those interested:
My website: www.brianabanos.com
Brwren.com: www.brwren.com
My instagram: @preventable_doc
Tea with Bri: • Tea with Bri
Where are they Now?: • Where Are They Now
How Do We Function: • HOW DO WE FUNCTION
Dupixent: • March Dupixent Update
TSW Facts, Part 1: • TSW Frequently Asked Q...
TSW Facts, Part 2: • TSW Frequently Asked Q...
Long Haulers: • Long Haulers in Topica...
One Tip Tuesday: • One Tip Tuesday
Preventable Sneak Peeks: • PREVENTABLE SNEAK PEEKS
Preventable Snippets: • Preventable/Still Prev...
Uplifting TSW content:
Don't Be so Hard on Yourself: • Don't Be So Hard On Yo...
Can't Stop the Feeling: • Can't Stop the Feeling...
Thank you all so much. I have been a part of this community for over eight years. I hope I have served my fellow TSW warriors well, as well as the eczema community (who I truly wish never makes it into this camp).
I've followed your story for a long time, and to see you flaring up again after so much success is heartbreaking. I really hope this is just a minor setback and you get back to your normal strong minded self soon, so that you can continue to inspire the rest of us out of our own dark places! You're the best, don't forget it 🥰
Thank you, love 🙏🏼🫂
I know you are going through a hard time, but sharing these moments really bring so much comfort relief to everyone suffering like you. Im so grateful for your willingness to share and be real about this condition. Sending love and appreciation to someone as amazing as you!
Stay strong Briana, the toughest climbs lead to the greatest views.
I love this. I think I will write this on my chalkboard.
I’m praying for you my friend. TSW is an absolute nightmare. Sending love ❤️
Sending love and hugs Bri. I'm 7 years and 8 months TSW and the sh*tshow never seems to end.
We are the strongest people I know
Sending you so much Love Briana! This too shall pass. Stay strong.
I’m so sorry that you’re struggling. You healed before and I’m sure you’ll heal again. Be kind to yourself. Sending so much love xxx
Bless you Briana, hard to know what words to put, other than hugs and love to you. I'm 6 yrs in, and have had a clear year but now in full flare after a busy (for me) summer. Have to say, I'm getting occasional sharp eye pain too - never had it before and am not taking dupixent or indeed anything. I've considered it may be due to dehydration, but like you taking it a day at a time and trying desperately not to analyse as I'm so tired of it all. Hope the consultation goes well.
Those out of the blue flares really hit you hard. I'm so sorry about the eyes =( such a conundrum this all is
briiii, i am so sorry. this broke my heart... sending lots of love and prayers. you are so strong. you give us hope. we love you.
And I feel the love
Sending you a virtual hug 💙
Sending you so much love Bri, I’ve been a silent follower for two years now since I started TSW and you’ve been such a comfort to me❤I totally empathize with everything you are feeling right now and all the existential stress that occurs when flares happen even when they’re “not supposed to”. It’s so agonizing and unfair. I am confident this is just another bump in the road for you but no matter what happens with you and dupixent try to remember that there are other options in case you do have to stop. I had to come off last year abruptly after a terrible reaction after over a year of thinking it was my saving grace. As stressful as it was I was able to do a flush out period and get on Adbry (another biological i’m sure you know, just interacts with your immune system a little less) and that’s really helped me for the time being. It’s such a fear of mine as well that one day everything will stop working and I’ll end up back at square one, and as tough as it is to let that fear go, i know you know finding a way to is pivotal to living a real life. In terms of financials, you have done so much for this community and spreading awareness I think a lot of us wouldn’t mind giving back if you made a gofundme to get you through this time. You’ve accomplished so much throughout this journey and have been such a positive force of inspiration to every soul you’ve touched going through this, please remember that. Wishing you the best and sending lots of love and healing thoughts your way🩵
Hi Bri! Sending you Love, Light and Healing your way! Praying for you!
God gives us what we can handle. You Being an inspiration to all of us TSW people…well that’s an understatement. There are no words that match your effort, your strength and your perseverance that you show us and guide us to be strong ourselves. Love you to pieces.
Thank you for such lovely words. This community knows how to prop a girl up x
Oh buddy - my heart crumbles for you. Big breaths. Even in all this turmoil, you continue to shine bright. It brings relief knowing you unraveled a bit with your prof. Calling on all the angels to find peace and heals for you asap xx
🫂🫂
God bless you Briana one day you will be cured from this stay strong
Thanks for sharing this Briana and being so transparent. Real live documentation is so important as these videos, pictures and cases will 1 day become the new true medical records. You've sacrificed yourself & your time by putting yourself out there for a community that needs more and more of this. Thank you!
Praying for your full recovery always.
Thank you dear 🫂
I’m so sorry it didn’t work out, everything will be ok Briana. Something will work, just keep trying different ways until your body heals. My son just got off dupixent as well, he had major facial flares and eye conjunctivitis with eye pain. I totally feel every emotion of yours in this video because my 18 year old is going through the same thing right now. Our life is constantly being turned upside down. He started using hydrocortisone again after the dupixent flares last week cause it was so bad. Especially after being off steroids for over 3.5 years. Tsw started for my boy when he was just 13 years old, you can imagine he is not your typical teenager, much more mature and just a different person completely now.
He just told his derm today that he is done with biologics and immunos for now and wants to try to heal his way. Ice baths, cold showers, sauna for a few minutes, salt baths and intense exercise has helped a lot. I don’t know how he does it but there is a fire inside my kid I haven’t seen in anyone. But now we have to somehow get off these creams again. It’s exhausting… we just have to keep going and do whatever we can to get through this. It’s so interesting that low cortisol symptoms are similar to tsw symptoms, like, can’t these doctors fix at least that problem? How do we get our natural cortisol to go up as quick as possible without aggressive drugs? I would think if we had that solution then we don’t need creams.
Hang in there…you will get better…
Wow. What a resilient boy you have. You should be so proud. Thank you for the lovely and kind words. I hope that one day, it may be possible to create a group for kids and teens to be able to cha online with one another so they don't feel so alone.
It’s a great idea to have a chat group for kids/teens. I am so proud of him, he literally told me when he was 15 years old that he is so glad he is going through this because he is a much better person now. I was holding back tears because as a mother I just wanted to rip my heart out and give it to him if that healed him. He still claims he was not as nice of a person and lacked empathy and compassion. It’s so profound how we reflect in times of pain and suffering, even at such a young age. The things you’ve learned through this experience have only made you stronger but I know that enough is enough now. We need healing, where there is a will there’s a way. Right now all we can do is just throw everything at this thing that we know helps us, and most importantly do whatever you feel is best for you. As for the financial cost this can have on people, it’s just insane. Every penny we saved to expand our home for the last decade is gone to doctors and treatments and me taking time off work to be with my son. But that’s ok, I would do it all again, money can be made, the most important thing is health and the knowledge we’ve all gained is priceless. Hang in there, you will figure something out and I will wait for your next few videos where you will be better again.
@@christinanatchov2088 he's extremely lucky to have you as a parent. What a gift to him. Thank you for pouring love into him during all of this.
I'm making dinner and listening. Started the ugly bawling when u said about your eye and 9yrs. Evan said "babe don't cry I'm doing good." Right then blood dripped from his arm onto the rug and instead of crying harder we both started laughing. What a twisted mental screw TSW is.
🫂🫂🫂 it's such a rollercoaster
Hello Briana, I’ve followed your story for a while now and I just want to say how beautiful you are with or without your eczema flare. You are such a strong charismatic woman. Wishing you brighter days ahead…💙 💙 💙
This really does mean a lot. Thank you, dear 🫂
Hey Briana I find adtralza is helpful for TSW but avoids the facial flares and eye issues of dupixent. It's not perfect but it's definitely less harsh on the side effect side. I've notice I still have some flares with season changes and after covid infection. Stay strong Briana you're a huge inspiration. Thank you for bringing light to this issue and being so transparent it's a huge support for others dealing with this awful condition.
Thank you for sharing your lived experience with the newer drug. And for the love xx
So sorry to see you're still suffering Briana - nobody should have to suffer for this long & to this extent.
I'm 6.5 years into TSW after 35 years using, and still struggling.
RSS / TSA / TSW has got to be one of the longest drug withdrawals out there, and one of the biggest, (in terms of the number of people), medical negligence scandals in history.
Stay strong & wishing you all the best for your time in Scotland.
I appreciate this Graham. It really is a massive negligence
❤ im so sorry. I think all the things you mention: tsw and stress walks hand i hand. 😢
But you will be okay soon! Hang in there
❤❤❤
💙❤
I hope you feel better soon. You have got this! How are you able to afford rent without job?
Bleeding money atm.
Hey Bri, you better now? Im 42 months and my fingers flared and got infected.
Hey lovely? Do you have insta? I have a highlight reel where you can see updates. I desperately need to do one here and will endeavor soon to do so. I'm doing a lot better, but my neck and arms are very much a trouble area. I have slight issues on hands too
This absolutely sucks...its the same with me 😭 i m sooo done!! Cant go anywhere cant do nothing.. always itching... I really wonder if I should have gone through the tsw route 😢
We can only speculate xx sending a hug
I wish u strength
I feel for you ❤
Did you consult Dr.Rapaport?
I know he is very experienced and expensive as well but it’s totally worth it.
My best wishes to you.
I am not a fan of his.
@@BrianaBanosPreventable you will get out of this cycle once and for all. This is your last flair I believe. I know how difficult this situation is and non can understand except you. I my self struggled to make people around me understand what I was feeling though it was not showing much outward.
I believe in the super power GOD who made our body and made it well. HE will cure you please believe in your body it can heal on its own. I am doing cold turkey for 2 years now. My love to you my dear.
My Heart breaks. I am 5 years in TSW and never had a break. My facial hair loss in patches is the most awful experience ever. I dont even know anything about life now and why I am living.
Awe love. Sending a gentle hug. Remember, if you're ever feeling too far down in the darkness, don't do it alone
Therapy or medications that can help give you that break. Don't bet yourself up if you NEED the help
@@BrianaBanosPreventable Hi Briana, Do you have any updates on the condition now.
@tpb1006 at the moment, all updates are on my instagram. I endeavor to make a video at some point in May x
How u getting on?. Hope it calmed for u.
Just these past two days it's finally been calming.
While i was taking Dupixent my neck and face where so red raw that i had to stop taking it....
So crazy how it affects us all so differently
Feels like Dupixent restarted my TSW. Was at the same level of up and down for years (I think because of diet) Then did maybe a month of Dupixent now I can see my skin go from good, transition period to bad and then back over a month maybe. I don't think I'll ever put myself on anything again. Hope any of this helps
It just isn't for everyone. I know people on it for years who love it and have zero issues, and then those one month in who see immediate side effects. Like you said, probably won't take anything else again if i do come off this. At least for a while.
Wish you a speedy recovery. It’s definitely a stress flare. I think our bodies are permanently damaged due to prolonged HPA axis suppression. Every time we get major stress our cortisol levels spike and maybe our bodies interpret that as if we’re on exogenous steroids again.
I’m 5 years into TSW, dupixent also gave me way too many side effects, which led me to trying out functional/alternative medicine treatments (coimbra protocol & low dose naltrexone + supplements + diet for leaky gut).
I’m a physician so was always very suspicious of alternative treatments but it cleared me of dupixent side effects and cleared my skin within a month… eventually got so well I stopped the dupixent and the alternative treatment and continued to be well until next stress flare. Go back on the protocol and diet and got cleared up and now having a post partum flare 😢 so will be going back to alternative treatment and possibly dupixent or a jak inhibitor.
It is so mentally taxing, hope to see you glowing again soon
its the food you eat.
Xiu-Min Li, M.D she can help
Hi. I'm the creator of Preventable, the documentary on TSW where I interview her. Very aware of who she is x