Hi everyone :) Here's me adding my voice to others who are also raising awareness for Topical Steroid Withdrawal, though for me, it's from the caretaker's perspective. If you're wanting to read more about TSW, here are some helpful links to get your started: ITSAN: www.itsan.org/ National Eczema Association on TSW: nationaleczema.org/tsw-need-to-know/ Hugs ♥
TSW partners deserve all the love and appreciation when they're as helpful and supportive as you have been. I'm going though TSW now and i don't know how I would do this without my husband. You guys are the unsung heroes and I appreciate you
Your poor husband! I cringed when I heard how he went on prednisone, antibiotics, and the biologic! That was the worst thing he could have done now that I know better. I have been going through this myself and empathize with his misery. So nice that he had you as support and the appreciation I'm sure he has for you is more than you could ever know. Especially during those sleepless nights. Thank you!😊❤
As someone currently going through it for two + years, I completely emphasise with your husband. I just want to thank you for spreading awareness and say you are a wonderful wife to stick with him during the traumatic experience that is TSW. I hope you guys hang in there and heal well, all the best.
I wondered what happened to you, Joanna. I am so sorry to hear about your troubles.....I certainly hope that 2022 is much better for you and your husband....I have missed seeing you and I am happy to see you back in the saddle again...I hope that you will continue to make your great videos and your husband's health continues to get better.......Please have a very healthy year 2022!..........:)
I was prescribed Tacrolimus ointment by a dermatologist for psoriasis. It was very effective at first, but after years of use, it became less effective. I decided I was going to stop using it, and after 2 weeks being off, I had the worst break out of my entire life. Even though tacrolimus isn't a steroid, it can still cause TSW (Topical Steroid Withdrawal). For the next month, my skin kept getting worse. My skin turned into zombie skin on the area I used it, that's the best description for what happened. It turned into a big open wound, my skin was falling off, and fusing onto itself in skin folds. I didn't know what was happening, and it takes me months to see a dermatologist. It has left me with permanent damage, but not too bad, luckily. I was so depressed during this time, but I stuck it out, and got better. I'm never going back to using those medications, I'm trying lifestyle changes now, and I'm noticing some improvements.
My daughter has been going thru this since Nov 2019. It is hell for her! It is real. I feel so bad for TSW parents who do not have a support system. Alot of TSW patients go through a very debilitating time period. It is very depressing. Many cannot function and lose their job etc. Having a strong support system is basically essential for them to heal. Some TSW patients it takes years!! 😥 God Bless You! I am very thankful for my daughters boyfriend who has done the same thing as you held her talked to her through the anxiety or panic attacks etc. 🙏. I appreciate him for that especially. You are a hero and awareness is key. Thanks for your video.
Great to see you back. I'm so sorry to hear about the TSW problem for your husband. As a person with lifelong skin eczema issues (close not never as bad as your husband's case), I can empathize. I'm so glad he's recovering now and your life is slowly getting back to normal. Looking forward to your videos again soon!
Thank you for your update. I can't even begin to imagine what the two of you are going through. You are a courageous couple and will remain in my prayers. God bless you.
You are a gem of a human being. Step by step you helped your man throughout this process and supported his recovery. He will NEVER forget this. EVER. People like you make the world a beautiful place. Watching your video felt like walking back in time through my own TSW journey. Thank you for bringing awareness to this terrible avoidable condition. -Farhan
after taking accutane, i was prescribed triamcinolone acetonide and fluocinonide to combat my eczema. i was not directed on how to use it, and as a result my skin was very addicted to primarily the fluocinonide since it’s much stronger than the triamcinolone. my TSW lasted about 2 years. my heart goes out to you and your husband.
You're an angel. You may have lost your church but your God was with you. My church's theme this year is "Stay faithful and true. All things new in 2022. Your actually living it. Stay blessed.
Hi Joanna, thank you so much for making this video. I've been on a 1% hydrocortisone cream for my face and forearms for almost a year, and recently read about TSW. I'm now on week 2 of gradually stopping the usage and thankfully my skin is not reacting too badly yet - hopefully I'll be lucky enough to escape TSW. However I got a recent diagnosis of eczema (the reason I got prescribed the steroids in the first place, although it was misdiagnosed then as spring allergies), so I'll be dealing with that flaring up more and more now that it's not being suppressed as often. I completely relate to how hard it was for you guys to even find out what TSW is. I never heard about it from my doctor, but I found it while doing my own research online. I'm so relieved that I found out about it now and not when it was too late. There was a period of time where I thought I had it, and I was so panicked and worried about how the recovery might take over my life for a long time - I'm in my freshman year of music school and I felt like I was just getting started! I talked to my boyfriend about it and I would hope that he would care for me like you did for John. I am so happy that now you know what it is, and I wish you and him the best of luck on everything! 💙
same here, 1% hydrocortisone for years for 2 weeks at the time, but the flare ups kept coming and the doctor told me to use twice a day, six months later: a flare up that covers 75% of my body, liquid retention that swell my left arm and chest. So the last treatment is: 5 days of 30 mg of Prednisolone and an emollient cream. I'm flaking all over heavily and itchy. I'm detoxing, only fruit, fresh vegetables and chicken broth. I'm originally from Colombia, have lived in the UK for the past 20 years, eczema only appeared in my life about 10 years and I can say that the lack of cleansing your gut periodically (naturally or prescribed drugs) it's the cause of these skin ailments. Hopefully I will get off those steroids and never again. Health starts with eating fresh fruit and avoid process foods, as tasty as they are.
My overall TSW journey has been since Jan 19, 2021 and I've struggled having a strong support group behind me. I'm glad John has had God, Jesus, and your support through it all.
Wow !!! Wow !!! Thank you for the update. I just had a lesson with you during the week and had no idea what you have been going thru. Oh my. I bet you cant wait for the new normal. Sending healing prayers.
My god as I am watching this video ahead everything from my time is coming back i literally slept sitting on my bed for 11 months because my facial skin couldn’t bear the blood pressure while I lay down straight ur husband is lucky to have someone like u with him because this thing breaks u internally then the smell of oozing skin. Man I m not healed yet it’s gonna take this year too next year maybe will be like normal being. I wanna workout at gym so bad
If u are still struggling I recommend a few things: -Baking soda baths -UVA UVB solarium sessions -Avoid all foods that have a high Glycemic index, meaning don't let his blood sugar go up as thst increases inflammation -magnesium glycinate, vitamin c, biotin and collagen supplementation and preferably all the other vitamin and mineral supplements that are involved in skin healing -Spirulina and chlorella tablets - deep breathing exercises
That’s what real love is. Through sickness and health, we promised each other at our wedding vows. And I believe that your faith has carried you through these trials. Also the TSW is a topic of great importance. I have been always afraid of steroids overuse. And now the medical profession has recognize it. Good luck with the healing of your husband.🙏
Wow Joanna, I’m so sorry for your husband. Having skin issues is no joke, I had to get laser hair removal shortly after my 20th birthday because the facial hair I had was giving me severe acne. Luckily, I’ve never been on accutane or anything like that but as a kid, I was prescribed Benza Clin (which dried up my face) and Differin (which you can now get at your local CVS). I also find that it’s very hard for me to play Flute when you have severe on your chin or lower lip area.
I know about this because of Joanna Ceddia. My favorite Joanna TH-camrs are getting this I feel so bad it seems so painful. I hope and your husband start feeling better soon.
this is a testement to your character and your understanding of morals/ ethics. im a man who is in a mild version of what you and your partner have experienced and i beleive i was lucky enough that i figured it out before it became out of control (although im not healed i have improved and used topical steroids on my face for around 1 year and a half) i beleive mine is some form of rosacea combined with sebhoric dermatitis and having had a very very poor diet full of sugar, fats and salt i ruined myself for almost 30 years. i give myself and anyone looking to recover from their ailments (be it tsw or simply poor gut/immune health) up to 2 years to fully recover from these conditions. the worst part is when the person afflicted, judges and hates themselves for it and the effect this has on the people who love them and just want them to get better......well done on enduring this....and bst of luck to both of your futures
Wow. I use topical steroids but only on occasion. I did have a situation when things were very uncomfortable, where my palms were red, oozy, followed by flaky. I know you said this shouldn’t affect palms but in my case it was affecting only my palms. And the problem didn’t start on my palms, I only had dermatitis on my fingers which was where I was using the steroids. And I could not figure out why it “spread”. Things make so much more sense now. Thanks for discussing and posting resources! I’m glad John is on the mend. Don’t forget to take care of yourself too, OK?
Much love and support to you both from my lil corner of Canuckdia! True courage and heart for the win! it's so great to hear someone talking about a skin issue, which surprisingly many have but are to shy to talk about. Sharing your journey will help many many people I am sure!
Wow! It must've been such a relief finally knowing what it was. Wishing your husband all the best for his continuing recovery, and you on your journey back to "normal" brain function!
Very sorry to hear about your trials. To see someone you love suffer and to feel helpless in the face of this is so hard. I know what it is to loose your church family. My wife and I went through that close to 10 years ago. We thought we would spend the rest of our lives together and loved many of them. That loss left a huge hole and we still grieve this loss while simultaneously knowing we could not go back. I wish you strength, love and wisdom on your journey.
I'm happy to hear your voice again, Joanna, and I am so sad to hear about yours and Jon's struggles with TSW. Being a caretaker is an incredible responsibility, and I think I speak for a lot of if not all of your subscribers when I say GURRRLLLL get some rest we love you and we will happily walk with you on this journey as much as you're comfortable allowing us to do so.
Wow thank you for sharing your story. I have eczema my mother has it too. It didn't start with it until I gave birth to my son. I have stopped using topical steroids about 6 months ago and Im called I did!! My excema hurts and itches however it is manageable most days. I feel like people don't think it is serious however it surely is. I appreciate you sharing your story and you are an amazing human for all the help you gave to your husband. Im glad you all are better.. Take care xo
You have to be very careful with these skin conditions as they get diagnosed as ezecma for which topical steroids are used.I was diagnosed with ezecma in about 2009 and it just got worse and worse so I ended up getting a patch test at a hospital and they decide it was actually psoriasis but unfortunately it was neither of the two.As tumours developed on my hand about a year after the psoriasis diagnosis leading to an amputation.The real cause finally came out,a rare cancer called Mycosis Fungoides which is a form of non Hodgkin's Lymphoma and it it was at stage 2b the beginning of the advanced malignancy by the time it was discovered.
Extremely informative. Thank you for sharing. I’m sorry you lost your church home. I hope you continue to extend grace to yourself because you deserve it.
You are so sweet and generous with your intense experiences and of your husband. It makes me want to cry when he said “broken man” I grew up with my Mom judging my dad’s eczema “it is so gross oozing all over the bed” and I was diagnosed with it (more on my hands and face around mouth) and I get my Mom being married to someone who wasn’t taking care of himself aka my Dad who has also taken off cast a a few days to a week after breaking his arm. So yes in my Dad’s case he does what he wants with his health concerns and lead to hernia surgery that would of not been as bad if he went earlier but now he takes care of his eczema more. I recently for Father’s Day got him skinfix eczema+ body wash and hand cream for him to start trying because the steroids are so bad. And recently I developed some patches on my hands and a dental appt I put off for as long as possible (guess I’m like my dad in that way too) causes anxiety. I allowed the anxiety to interfere with my presence in the moment before the appt (not a bad extraction at all but I did NOT want to go) and I ended up touching just two of my fingers with some blisters that are so tiny but kept bothering me every time I felt my hands and I was out of steroid cream of course. And Tuesday as I expected it was 100% worse. Got my steroid cream yesterday now I have two and I can’t figure out which one is for my face and which is for my hands. Seeing my PCP tomo. Also there’s this short I have seen as of 6/27/22-now of someone posting “dyshidrotic eczema day 5” “dyshidrotic eczema day 6” and so on. Idk why it’s sooo bad. Worse than I ever could imagine. I thought mine was out of control…I keep commenting like are you seeing a doctor? Are you seeing a doctor who is helping you?!?! It looks like better as the blisters go into each other and form one bigger one and then less of the hand had the blisters on it but no comment about if they’re using steroid creams/steroid withdrawal or seeing a doctor idk.
Hi Joanna I have suffered with Eczema since I was a baby I am now 61 years old like you and your husband it is very depressing not knowing what to do I also would scratch all the time I would be so tired there was no rest I tried many remedies it would bring me to tears. A few years ago I was sent to an Immunologist and has made an improvement in my life everybody is different but after so many years my skin has become very sensitive and maybe your husband has similar problem . I know it is easy to say but keep trying and I hope things get better in the future.
This is the literally what true love is. I don’t know what your channel is about but I’m going to subscribe for this video. Also I’m assuming he would do the same for you if needed and in future challenges you both face together as a married couple. Wow that’s beautiful. Just hearing your care like the first date?! You were already so empathetic it seems and helpful. I hope you do GIVE yourself that grace and truly accept it. Maybe see it as a gift from yourself to you or from the universe and higher beings to you for your compassion and overall humanity. You need yourself for yourself and then the love you pour into your husband and others. Thank you.
My god same as mine I am still going through this I stopped allopathy creams nd meds on 1 jan 2021 nd my skin is till not normal it bleeds oozes it’s my 3rd year staying at home i go out of my house only once a month for homeopathic meds
I m suffering from TSW it's 2 month. Now! I will say ( I was using a steroid cream for pimples I don't Kew it's a steroid cream and use it for like 2/3 years) N I have seen bad days in last 14 moths I can say But after going to m doctor. Now it's a lot better. And the big big pimples also has stop comg and no itch but sometimes once in 2/3 days it feels little itchy. M doctor has given me. Another steroid cream With some antibiotics n a sunscreen. She told me to mix the cream with sunscreen and use it during night for 5 days After that slowly stop using it and use only the sunscreen. 1 day gap, 3 day gap, 4 day gap like this. And I will say I m recovering
You've described exactly.. EXACTLY what i have been going through the past 17 months. Im on my 2nd dermatologist and waiting for her decision on a course of action. I've used clobetasol for most of that time .
Oh no, I believe that's one of the strongest steroids and you shouldn't be on it. It's terrible from my understanding. Dermatologistscdon't want you off of the stuff ~ they make money by making life long patients. Try speaking to your primary doctor because you need to be weaned off of the stuff.
Hey thx for this "update". I know some one who has this syndrome (TSW) and to tell u the truth; it sounds really traumatic. I've watched your entire story but unfortunately didn't hear of any solution to TSW that I could suggest to my friend. So - was the video simply abt your ordeal? You need to do a "solutions to TSW" too madame. Thx
Thank you for this video. It's how I discovered TSW. I was shocked as i have had these symptoms for 7 yrs and had no idea that it was the steroids (topical and oral) that were the cause. ❤
May I ask how many years has he been on steroid before his TSW? Was it on and off or continuous? I’m currently doing non moisture treatment on my body just to reset my skin on how to moisturise itself without any creams at the moment I can’t fully do it on my face and neck because I have to run errands and it makes me really conscious otherwise. I try to only moisturise my face once every 24 hours or if I’m going out sometimes I’d go 2 days without it if I’m just planning on staying in my room.
Just started having eczema in the last 3 weeks, it is so itchy and am using 1% hydrocortisone over the counter, thin layer once in the morning and again before bedtime and it helps a lot with the itchiness. Your video just made me aware of TSW so I will be careful since my doctor just prescribed a stronger steroids. Thank you.
No, don't do it. Take an antihistamine for the itch, take vitamin D, and use Vaseline. Wash it with Eurecine body wssh and use the lotion or Aquaphor. DO NOT go on anything stronger. Also change your diet to lean meat, veggies and fruit. It's easier to deal with excezma tham TSW.
What a year for the two of you! Your health and that of Johns comes first! At all time. So just do what you want and can do. We will see you when we see you 🙂
Pretty sure I'm going through it right now too, I can understand the pain he has been through and relate so much, we are just sitting ducks and can't do anything without the support, nights are so annoying for me... literally sleepless. I just keep my mind off it and watch stuff, tried sleeping pills too and they didn't work which says alot. I am trying homeopathic treatment /completely natural currently but of course takes its time and all that time is just suffering and pain.
Thank you for raising awareness about this horrible condition! Even though it’s not something I’d wish on anyone, I’m so happy you and your husband found answers.
Thanks for your video. This is really helpful. Can you talk about how you cared for him. What did you do to cure him? He is so lucky to have you as a partner. ❤
Did he try Dupixent injections yet? Dupixent isnt just for psoriasis, it is also for atopic dermatitis and eczema and other skin inflammation use-cases, even including for asthma now. From some of my own research I found there's a lot of links between lung and skin issues...not relevant here, I just found that interesting. Also gut bacteria playing a big role too and cutting out all carbs and sugar.
After dealing with an intense few weeks with the worst eczema breakout I've ever had, I am now following the Eczema Detox diet by Karen Fischer. It's not perfect but it's better than suffering with a miserable condition that prevents you from being able to even function.
hello! thank you so much for sharing your story. I am currently experiencing the same TSW where i have been oozing and flaking on a weekly basis for 4 weeks now:( I was wondering if you could share the recipes that you guys made for gut health? thank you!!
Baby doll, take your time and realign yourself. I don't want to see you back here until you want to be here and can do it in a relaxed, serene, enthusiastic way that doesn't cause you any stress, got that? Give the hubs a hug and take one for yourself as well. 🙂
Hi could someone help me pls I have had excema since I was 18 I’m 20 now I started using steroid cream for about a year and used it across my entire body as I have bad excema and I found out how bad it is to use so I’ve been doing tsw for about 10 months how long does it take for it to heal because I need some hope as I’m losing it really quickly
My four year old is going through this. FOUR YEAR OLD! We waste so much money on lotions and creams. He’s so uncomfortable. I’ve cancelled appointments with dermatologists because I am tired of getting steroids and antibiotics and told to layer the same creams over and over. This month alone, meaning 11 days, we have spent $300 on creams, ointments, and wrapsZ
Hey just another flutes is it Michael here sorry about your husband you know we are all here for you and I like always and can’t wait for your other videos I love you so much you’re the queen
My grand baby is allergic to formula! Born 10/19/21 and she has head to toe rash red and we have her waiting on a PurAmino formula. But they want me to soak in a bath tub probly 10 to 20 gallons water and 1 cap full of Clorox.. then rinse and slather moisture cream.
You are an absolute saint for caring for John. Please search for "eczema and carnivore diet" on TH-cam, or "Paul Saladino" and the "Carnivore Code". I believe his skin issues may be fundamentally due to his diet. Good luck.
I wonder if ocean noises or white noise would help stop u from listening to his snoring. Also I really hope that u can get some therapy sessions because it would probably be really good for you after this trauma ❤️
Thanks so much for the candid post! Health issues are so debilitating, especially the mysterious ones! Just as I was thinking "what about tea tree oil," that part of the video came up. With the TSW diagnostic, it sounds like tea tree oil went off the radar. I learned about it while searching for a homeopathic shampoo that also contains caffeine. The immune system is so personalized and complicated that one remedy might not be appropriate for another. Anyway, here is the skinny on what I've settled with for inflammation (ingrown hairs under beard) and healthy skin. I make my own shampoo and body soap, with a mild homeopathic base, Renpure Plant-Based Beauty Biotin & Collagen. I've marked 100mg and 200mg on a bottle. When it reaches 100mg I fill to 200mg and add 2 drops tea tree oil (antiseptic, inflammation control, stimulant), 1 drop of helichrysum oil (antiseptic, stimulant, fragrance), 3-4 drops Awaken Organic Energy Supplement by Khroma Herbs (stimulant, fragrance), and 3 drops of 30% salicylic acid (exfoliation, skin softener). As it happens, I am mildly allergic to tea tree and helichrysum oils. With much higher concentrations, I will develop skin reddening, even welts. This concentration doesn't cause me any side effects though. I've been happy with Majestic Pure brand of oils and disappointed with Lagunamoon quality. The salicylic acid works by dissolving bonds holding dead skin cells together. Good for removing dry skin, but probably bad for John's condition. The tea tree oil has amazing properties as a solvent and lubricant too. I use it (every 2 to 4 weeks) on my flute lip plate, interior, and mechanism! It is hydrophobic (repels water) and gives my silver plated instrument a significant tone improvement (I also use very small amounts on a wooden headjoint and wooden clarinet). Tea tree oil will also very effectively remove adhesive from car paint, glass or metal. Occasional use this way does not bother my skin. I've grown affinity to the aroma but I wouldn't oil then use my flute in a small closed room. The helichrysum oil has similar properties but it is less like a solvent (it can make pads sticky!) and has a more floral aroma. I pay very careful attention to the lost my church comment, too. I know how debilitating that can be. Please remember, as the Lord wills, we must also surrender. When we are forced to change aspects of our lives, it also creates an opportunity for new life to begin. If you feel confused with circumstances beyond your control, consider that the needs of heaven are not always apparent. When we pray for guidance, and peace, and find thanksgiving in all things, his grace permeates our lives. When we ask the Father for help, he does not bring us harm. When we find the will of the Lord, we rejoice because we are his people, and His will prevails! An individual from my church family experienced remarkably similar symptoms as you described with John. Much effort was taken to identify an allergen, ultimately sugar was the cause. Although he already had a low sugar diet, a sharp reduction in the consumption of fruits resolved his symptoms. Ultimately, all healing comes from Jesus Christ. Bless you and John. May your perseverance in faith continue to grow that you continue to find the grace which brings joy, prosperity, and good health! Amen.
Hi everyone :) Here's me adding my voice to others who are also raising awareness for Topical Steroid Withdrawal, though for me, it's from the caretaker's perspective.
If you're wanting to read more about TSW, here are some helpful links to get your started:
ITSAN: www.itsan.org/
National Eczema Association on TSW: nationaleczema.org/tsw-need-to-know/
Hugs ♥
TSW partners deserve all the love and appreciation when they're as helpful and supportive as you have been. I'm going though TSW now and i don't know how I would do this without my husband. You guys are the unsung heroes and I appreciate you
Your poor husband! I cringed when I heard how he went on prednisone, antibiotics, and the biologic! That was the worst thing he could have done now that I know better. I have been going through this myself and empathize with his misery. So nice that he had you as support and the appreciation I'm sure he has for you is more than you could ever know. Especially during those sleepless nights. Thank you!😊❤
As someone currently going through it for two + years, I completely emphasise with your husband. I just want to thank you for spreading awareness and say you are a wonderful wife to stick with him during the traumatic experience that is TSW. I hope you guys hang in there and heal well, all the best.
I wondered what happened to you, Joanna. I am so sorry to hear about your troubles.....I certainly hope that 2022 is much better for you and your husband....I have missed seeing you and I am happy to see you back in the saddle again...I hope that you will continue to make your great videos and your husband's health continues to get better.......Please have a very healthy year 2022!..........:)
I was prescribed Tacrolimus ointment by a dermatologist for psoriasis. It was very effective at first, but after years of use, it became less effective. I decided I was going to stop using it, and after 2 weeks being off, I had the worst break out of my entire life. Even though tacrolimus isn't a steroid, it can still cause TSW (Topical Steroid Withdrawal). For the next month, my skin kept getting worse. My skin turned into zombie skin on the area I used it, that's the best description for what happened. It turned into a big open wound, my skin was falling off, and fusing onto itself in skin folds. I didn't know what was happening, and it takes me months to see a dermatologist. It has left me with permanent damage, but not too bad, luckily. I was so depressed during this time, but I stuck it out, and got better. I'm never going back to using those medications, I'm trying lifestyle changes now, and I'm noticing some improvements.
My daughter has been going thru this since Nov 2019. It is hell for her! It is real. I feel so bad for TSW parents who do not have a support system. Alot of TSW patients go through a very debilitating time period. It is very depressing. Many cannot function and lose their job etc. Having a strong support system is basically essential for them to heal. Some TSW patients it takes years!! 😥 God Bless You! I am very thankful for my daughters boyfriend who has done the same thing as you held her talked to her through the anxiety or panic attacks etc. 🙏. I appreciate him for that especially. You are a hero and awareness is key. Thanks for your video.
I went through this with my dad. It's hell, but there is lots of hope on the other side.
Great to see you back. I'm so sorry to hear about the TSW problem for your husband. As a person with lifelong skin eczema issues (close not never as bad as your husband's case), I can empathize. I'm so glad he's recovering now and your life is slowly getting back to normal. Looking forward to your videos again soon!
Thank you for your update. I can't even begin to imagine what the two of you are going through. You are a courageous couple and will remain in my prayers. God bless you.
You are a gem of a human being. Step by step you helped your man throughout this process and supported his recovery. He will NEVER forget this. EVER. People like you make the world a beautiful place. Watching your video felt like walking back in time through my own TSW journey. Thank you for bringing awareness to this terrible avoidable condition. -Farhan
after taking accutane, i was prescribed triamcinolone acetonide and fluocinonide to combat my eczema. i was not directed on how to use it, and as a result my skin was very addicted to primarily the fluocinonide since it’s much stronger than the triamcinolone. my TSW lasted about 2 years. my heart goes out to you and your husband.
You're an angel. You may have lost your church but your God was with you. My church's theme this year is "Stay faithful and true. All things new in 2022. Your actually living it. Stay blessed.
Hi Joanna, thank you so much for making this video. I've been on a 1% hydrocortisone cream for my face and forearms for almost a year, and recently read about TSW. I'm now on week 2 of gradually stopping the usage and thankfully my skin is not reacting too badly yet - hopefully I'll be lucky enough to escape TSW. However I got a recent diagnosis of eczema (the reason I got prescribed the steroids in the first place, although it was misdiagnosed then as spring allergies), so I'll be dealing with that flaring up more and more now that it's not being suppressed as often.
I completely relate to how hard it was for you guys to even find out what TSW is. I never heard about it from my doctor, but I found it while doing my own research online. I'm so relieved that I found out about it now and not when it was too late. There was a period of time where I thought I had it, and I was so panicked and worried about how the recovery might take over my life for a long time - I'm in my freshman year of music school and I felt like I was just getting started! I talked to my boyfriend about it and I would hope that he would care for me like you did for John. I am so happy that now you know what it is, and I wish you and him the best of luck on everything! 💙
same here, 1% hydrocortisone for years for 2 weeks at the time, but the flare ups kept coming and the doctor told me to use twice a day, six months later: a flare up that covers 75% of my body, liquid retention that swell my left arm and chest. So the last treatment is: 5 days of 30 mg of Prednisolone and an emollient cream. I'm flaking all over heavily and itchy. I'm detoxing, only fruit, fresh vegetables and chicken broth.
I'm originally from Colombia, have lived in the UK for the past 20 years, eczema only appeared in my life about 10 years and I can say that the lack of cleansing your gut periodically (naturally or prescribed drugs) it's the cause of these skin ailments. Hopefully I will get off those steroids and never again. Health starts with eating fresh fruit and avoid process foods, as tasty as they are.
Did you later prevent the topical steroid withdrawal?
My overall TSW journey has been since Jan 19, 2021 and I've struggled having a strong support group behind me. I'm glad John has had God, Jesus, and your support through it all.
Wow !!! Wow !!! Thank you for the update. I just had a lesson with you during the week and had no idea what you have been going thru. Oh my. I bet you cant wait for the new normal. Sending healing prayers.
My god as I am watching this video ahead everything from my time is coming back i literally slept sitting on my bed for 11 months because my facial skin couldn’t bear the blood pressure while I lay down straight ur husband is lucky to have someone like u with him because this thing breaks u internally then the smell of oozing skin. Man I m not healed yet it’s gonna take this year too next year maybe will be like normal being. I wanna workout at gym so bad
If u are still struggling I recommend a few things:
-Baking soda baths
-UVA UVB solarium sessions
-Avoid all foods that have a high Glycemic index, meaning don't let his blood sugar go up as thst increases inflammation
-magnesium glycinate, vitamin c, biotin and collagen supplementation and preferably all the other vitamin and mineral supplements that are involved in skin healing
-Spirulina and chlorella tablets
- deep breathing exercises
❤️❤️❤️🎶🎶🎶 this warms my heart. So glad things are coming together. So much strength!
Glad to see you're still OK and haven't been a victim of the panerabread. I hope things get better for both you and John
That’s what real love is. Through sickness and health, we promised each other at our wedding vows. And I believe that your faith has carried you through these trials. Also the TSW is a topic of great importance. I have been always afraid of steroids overuse. And now the medical profession has recognize it. Good luck with the healing of your husband.🙏
Wow Joanna, I’m so sorry for your husband. Having skin issues is no joke, I had to get laser hair removal shortly after my 20th birthday because the facial hair I had was giving me severe acne. Luckily, I’ve never been on accutane or anything like that but as a kid, I was prescribed Benza Clin (which dried up my face) and Differin (which you can now get at your local CVS). I also find that it’s very hard for me to play Flute when you have severe on your chin or lower lip area.
I know about this because of Joanna Ceddia. My favorite Joanna TH-camrs are getting this I feel so bad it seems so painful. I hope and your husband start feeling better soon.
this is a testement to your character and your understanding of morals/ ethics. im a man who is in a mild version of what you and your partner have experienced and i beleive i was lucky enough that i figured it out before it became out of control (although im not healed i have improved and used topical steroids on my face for around 1 year and a half) i beleive mine is some form of rosacea combined with sebhoric dermatitis and having had a very very poor diet full of sugar, fats and salt i ruined myself for almost 30 years. i give myself and anyone looking to recover from their ailments (be it tsw or simply poor gut/immune health) up to 2 years to fully recover from these conditions. the worst part is when the person afflicted, judges and hates themselves for it and the effect this has on the people who love them and just want them to get better......well done on enduring this....and bst of luck to both of your futures
Wow. I use topical steroids but only on occasion. I did have a situation when things were very uncomfortable, where my palms were red, oozy, followed by flaky. I know you said this shouldn’t affect palms but in my case it was affecting only my palms. And the problem didn’t start on my palms, I only had dermatitis on my fingers which was where I was using the steroids. And I could not figure out why it “spread”. Things make so much more sense now. Thanks for discussing and posting resources! I’m glad John is on the mend. Don’t forget to take care of yourself too, OK?
Much love and support to you both from my lil corner of Canuckdia! True courage and heart for the win! it's so great to hear someone talking about a skin issue, which surprisingly many have but are to shy to talk about. Sharing your journey will help many many people I am sure!
Omg I lost episodes… I am so sorry to hear these things that happened though 2021
Wow! It must've been such a relief finally knowing what it was. Wishing your husband all the best for his continuing recovery, and you on your journey back to "normal" brain function!
So glad to hear from you! Praying for you guys! You're still one of my favorite TH-camrs!
Very sorry to hear about your trials. To see someone you love suffer and to feel helpless in the face of this is so hard. I know what it is to loose your church family. My wife and I went through that close to 10 years ago. We thought we would spend the rest of our lives together and loved many of them. That loss left a huge hole and we still grieve this loss while simultaneously knowing we could not go back. I wish you strength, love and wisdom on your journey.
I'm happy to hear your voice again, Joanna, and I am so sad to hear about yours and Jon's struggles with TSW. Being a caretaker is an incredible responsibility, and I think I speak for a lot of if not all of your subscribers when I say GURRRLLLL get some rest we love you and we will happily walk with you on this journey as much as you're comfortable allowing us to do so.
how devoted you have been to help him, he is very like to have someone like you. very few would do it.
Wow thank you for sharing your story. I have eczema my mother has it too. It didn't start with it until I gave birth to my son. I have stopped using topical steroids about 6 months ago and Im called I did!! My excema hurts and itches however it is manageable most days. I feel like people don't think it is serious however it surely is. I appreciate you sharing your story and you are an amazing human for all the help you gave to your husband. Im glad you all are better.. Take care xo
How many weeks or months did you use the steroid with how many times did you apply it.Did it give you a topical steroid withdrawal?
sending many well wishes and hope for continued recovery
You are such a kind and loving person, Joanna! I hope that your hubby keeps getting better and better! Please take good care of yourself too! 💖💖
You have to be very careful with these skin conditions as they get diagnosed as ezecma for which topical steroids are used.I was diagnosed with ezecma in about 2009 and it just got worse and worse so I ended up getting a patch test at a hospital and they decide it was actually psoriasis but unfortunately it was neither of the two.As tumours developed on my hand about a year after the psoriasis diagnosis leading to an amputation.The real cause finally came out,a rare cancer called Mycosis Fungoides which is a form of non Hodgkin's Lymphoma and it it was at stage 2b the beginning of the advanced malignancy by the time it was discovered.
Wonderful to have you back! Sorry or your problems, but it is a new year and hopefully a better year! I always look forward to your reviews.
Prayers to the both of you.
Extremely informative. Thank you for sharing. I’m sorry you lost your church home. I hope you continue to extend grace to yourself because you deserve it.
You are so sweet and generous with your intense experiences and of your husband. It makes me want to cry when he said “broken man” I grew up with my Mom judging my dad’s eczema “it is so gross oozing all over the bed” and I was diagnosed with it (more on my hands and face around mouth) and I get my Mom being married to someone who wasn’t taking care of himself aka my Dad who has also taken off cast a a few days to a week after breaking his arm. So yes in my Dad’s case he does what he wants with his health concerns and lead to hernia surgery that would of not been as bad if he went earlier but now he takes care of his eczema more. I recently for Father’s Day got him skinfix eczema+ body wash and hand cream for him to start trying because the steroids are so bad. And recently I developed some patches on my hands and a dental appt I put off for as long as possible (guess I’m like my dad in that way too) causes anxiety. I allowed the anxiety to interfere with my presence in the moment before the appt (not a bad extraction at all but I did NOT want to go) and I ended up touching just two of my fingers with some blisters that are so tiny but kept bothering me every time I felt my hands and I was out of steroid cream of course. And Tuesday as I expected it was 100% worse. Got my steroid cream yesterday now I have two and I can’t figure out which one is for my face and which is for my hands. Seeing my PCP tomo. Also there’s this short I have seen as of 6/27/22-now of someone posting “dyshidrotic eczema day 5” “dyshidrotic eczema day 6” and so on. Idk why it’s sooo bad. Worse than I ever could imagine. I thought mine was out of control…I keep commenting like are you seeing a doctor? Are you seeing a doctor who is helping you?!?! It looks like better as the blisters go into each other and form one bigger one and then less of the hand had the blisters on it but no comment about if they’re using steroid creams/steroid withdrawal or seeing a doctor idk.
Hi Joanna I have suffered with Eczema since I was a baby I am now 61 years old like you and your husband it is very depressing not knowing what to do I also would scratch all the time
I would be so tired there was no rest I tried many remedies it would bring me to tears. A few years ago I was sent to an Immunologist and has made an improvement in my life everybody
is different but after so many years my skin has become very sensitive and maybe your husband has similar problem . I know it is easy to say but keep trying and I hope things get better
in the future.
This is the literally what true love is. I don’t know what your channel is about but I’m going to subscribe for this video. Also I’m assuming he would do the same for you if needed and in future challenges you both face together as a married couple. Wow that’s beautiful. Just hearing your care like the first date?! You were already so empathetic it seems and helpful.
I hope you do GIVE yourself that grace and truly accept it. Maybe see it as a gift from yourself to you or from the universe and higher beings to you for your compassion and overall humanity.
You need yourself for yourself and then the love you pour into your husband and others. Thank you.
My god same as mine I am still going through this I stopped allopathy creams nd meds on 1 jan 2021 nd my skin is till not normal it bleeds oozes it’s my 3rd year staying at home i go out of my house only once a month for homeopathic meds
Im dealing with TSW and healing faster with NMT (No Moisture Therapy) its been 4 Month and the progress is approx 85% recovered!
Dr Rappaport. The guru of tsw. Dont waste your time on anything else..he isnthe first doctor to bring tsw to light.
Hope you and your husband have a great day👍
Hi. Thanks for sharing. Just wondering if any update.
I m suffering from TSW it's 2 month. Now!
I will say
( I was using a steroid cream for pimples I don't Kew it's a steroid cream and use it for like 2/3 years)
N I have seen bad days in last 14 moths I can say
But after going to m doctor.
Now it's a lot better.
And the big big pimples also has stop comg and no itch but sometimes once in 2/3 days it feels little itchy.
M doctor has given me.
Another steroid cream
With some antibiotics n a sunscreen.
She told me to mix the cream with sunscreen and use it during night for 5 days
After that slowly stop using it and use only the sunscreen.
1 day gap, 3 day gap, 4 day gap like this.
And I will say I m recovering
Wow, I'm really glad things got better!
Sending you and Ninjahubs lots of love and hugs!
You've described exactly.. EXACTLY what i have been going through the past 17 months. Im on my 2nd dermatologist and waiting for her decision on a course of action. I've used clobetasol for most of that time
.
Oh no, I believe that's one of the strongest steroids and you shouldn't be on it. It's terrible from my understanding. Dermatologistscdon't want you off of the stuff ~ they make money by making life long patients. Try speaking to your primary doctor because you need to be weaned off of the stuff.
Hey thx for this "update". I know some one who has this syndrome (TSW) and to tell u the truth; it sounds really traumatic. I've watched your entire story but unfortunately didn't hear of any solution to TSW that I could suggest to my friend. So - was the video simply abt your ordeal? You need to do a "solutions to TSW" too madame. Thx
You have been through so much! This is a beautiful example of what love looks like. ❤
My thoughts exactly. He's a lucky man. I've pretty much given up hope of finding someone like that.
Thank you for this video. It's how I discovered TSW. I was shocked as i have had these symptoms for 7 yrs and had no idea that it was the steroids (topical and oral) that were the cause. ❤
You're a living Angel. God Bless. 😇
May I ask how many years has he been on steroid before his TSW? Was it on and off or continuous? I’m currently doing non moisture treatment on my body just to reset my skin on how to moisturise itself without any creams at the moment I can’t fully do it on my face and neck because I have to run errands and it makes me really conscious otherwise. I try to only moisturise my face once every 24 hours or if I’m going out sometimes I’d go 2 days without it if I’m just planning on staying in my room.
omg so sorry glad your back much love
Just started having eczema in the last 3 weeks, it is so itchy and am using 1% hydrocortisone over the counter, thin layer once in the morning and again before bedtime and it helps a lot with the itchiness. Your video just made me aware of TSW so I will be careful since my doctor just prescribed a stronger steroids. Thank you.
No, don't do it. Take an antihistamine for the itch, take vitamin D, and use Vaseline. Wash it with Eurecine body wssh and use the lotion or Aquaphor. DO NOT go on anything stronger. Also change your diet to lean meat, veggies and fruit. It's easier to deal with excezma tham TSW.
Thank you, thank you, thank you for sharing your story. Greatly appreciated.
What a year for the two of you! Your health and that of Johns comes first! At all time. So just do what you want and can do. We will see you when we see you 🙂
Pretty sure I'm going through it right now too, I can understand the pain he has been through and relate so much, we are just sitting ducks and can't do anything without the support, nights are so annoying for me... literally sleepless. I just keep my mind off it and watch stuff, tried sleeping pills too and they didn't work which says alot. I am trying homeopathic treatment /completely natural currently but of course takes its time and all that time is just suffering and pain.
Amaizing how women and also love are quite strong. It looks like you can make light also in the darkest places! I wish you the best!
I’m going through the same thing now. I’m so sorry this happened!!!
I’m battling this now I’m still searching for a solution
Thank you for raising awareness about this horrible condition! Even though it’s not something I’d wish on anyone, I’m so happy you and your husband found answers.
Thanks for your video. This is really helpful. Can you talk about how you cared for him. What did you do to cure him? He is so lucky to have you as a partner. ❤
U are an absolute angel
I hope u and your husband are well now
Good to see you. Hang in there
Did he try Dupixent injections yet? Dupixent isnt just for psoriasis, it is also for atopic dermatitis and eczema and other skin inflammation use-cases, even including for asthma now. From some of my own research I found there's a lot of links between lung and skin issues...not relevant here, I just found that interesting. Also gut bacteria playing a big role too and cutting out all carbs and sugar.
After dealing with an intense few weeks with the worst eczema breakout I've ever had, I am now following the Eczema Detox diet by Karen Fischer. It's not perfect but it's better than suffering with a miserable condition that prevents you from being able to even function.
My face was completely damaged I start used dermaroller 0.5 and nothing
during TSW i could only sleep from 7am to 12pm~~ luckily i took medical leave from work
I never connected my nightly body spasms to TSW, thanks for the information :)
hello! thank you so much for sharing your story. I am currently experiencing the same TSW where i have been oozing and flaking on a weekly basis for 4 weeks now:( I was wondering if you could share the recipes that you guys made for gut health? thank you!!
Hang in there! It gets better! ❤️
Thank you for sharing your story!
I was in this situation right now, idk what to do anymore, i just want to disappear
You got this!!
what a courage, very impressing...please try to find back music and your smile
Hello. What is the update with John's condition?
Baby doll, take your time and realign yourself. I don't want to see you back here until you want to be here and can do it in a relaxed, serene, enthusiastic way that doesn't cause you any stress, got that?
Give the hubs a hug and take one for yourself as well. 🙂
Was he able to work at all during this period?? I want to work but I don’t think I can when I get off steroids
Please also consider trying the red light therapy it is very helpful with TSW using Joov or Mito
U are a great person respect and god bless u
Hi could someone help me pls I have had excema since I was 18 I’m 20 now I started using steroid cream for about a year and used it across my entire body as I have bad excema and I found out how bad it is to use so I’ve been doing tsw for about 10 months how long does it take for it to heal because I need some hope as I’m losing it really quickly
My four year old is going through this. FOUR YEAR OLD! We waste so much money on lotions and creams. He’s so uncomfortable. I’ve cancelled appointments with dermatologists because I am tired of getting steroids and antibiotics and told to layer the same creams over and over. This month alone, meaning 11 days, we have spent $300 on creams, ointments, and wrapsZ
Hey just another flutes is it Michael here sorry about your husband you know we are all here for you and I like always and can’t wait for your other videos I love you so much you’re the queen
Thankcyou for the information
Ur the real mvp
My grand baby is allergic to formula! Born 10/19/21 and she has head to toe rash red and we have her waiting on a PurAmino formula. But they want me to soak in a bath tub probly 10 to 20 gallons water and 1 cap full of Clorox.. then rinse and slather moisture cream.
Never put it on your your face neck and groin
I am glad your ok but I hope your Husband will become better.
You are an absolute saint for caring for John. Please search for "eczema and carnivore diet" on TH-cam, or "Paul Saladino" and the "Carnivore Code". I believe his skin issues may be fundamentally due to his diet. Good luck.
I wonder if ocean noises or white noise would help stop u from listening to his snoring. Also I really hope that u can get some therapy sessions because it would probably be really good for you after this trauma ❤️
I wish they warned the people they prescribed topical steroids to for long periods of time what could eventually happen
Thanks!
Wow, thank you so very much!!
Thank you,
♥️♥️♥️♥️♥️♥️♥️
Thanks so much for the candid post! Health issues are so debilitating, especially the mysterious ones! Just as I was thinking "what about tea tree oil," that part of the video came up. With the TSW diagnostic, it sounds like tea tree oil went off the radar. I learned about it while searching for a homeopathic shampoo that also contains caffeine. The immune system is so personalized and complicated that one remedy might not be appropriate for another. Anyway, here is the skinny on what I've settled with for inflammation (ingrown hairs under beard) and healthy skin.
I make my own shampoo and body soap, with a mild homeopathic base, Renpure Plant-Based Beauty Biotin & Collagen. I've marked 100mg and 200mg on a bottle. When it reaches 100mg I fill to 200mg and add 2 drops tea tree oil (antiseptic, inflammation control, stimulant), 1 drop of helichrysum oil (antiseptic, stimulant, fragrance), 3-4 drops Awaken Organic Energy Supplement by Khroma Herbs (stimulant, fragrance), and 3 drops of 30% salicylic acid (exfoliation, skin softener).
As it happens, I am mildly allergic to tea tree and helichrysum oils. With much higher concentrations, I will develop skin reddening, even welts. This concentration doesn't cause me any side effects though. I've been happy with Majestic Pure brand of oils and disappointed with Lagunamoon quality. The salicylic acid works by dissolving bonds holding dead skin cells together. Good for removing dry skin, but probably bad for John's condition.
The tea tree oil has amazing properties as a solvent and lubricant too. I use it (every 2 to 4 weeks) on my flute lip plate, interior, and mechanism! It is hydrophobic (repels water) and gives my silver plated instrument a significant tone improvement (I also use very small amounts on a wooden headjoint and wooden clarinet). Tea tree oil will also very effectively remove adhesive from car paint, glass or metal. Occasional use this way does not bother my skin. I've grown affinity to the aroma but I wouldn't oil then use my flute in a small closed room. The helichrysum oil has similar properties but it is less like a solvent (it can make pads sticky!) and has a more floral aroma.
I pay very careful attention to the lost my church comment, too. I know how debilitating that can be. Please remember, as the Lord wills, we must also surrender. When we are forced to change aspects of our lives, it also creates an opportunity for new life to begin. If you feel confused with circumstances beyond your control, consider that the needs of heaven are not always apparent. When we pray for guidance, and peace, and find thanksgiving in all things, his grace permeates our lives. When we ask the Father for help, he does not bring us harm. When we find the will of the Lord, we rejoice because we are his people, and His will prevails!
An individual from my church family experienced remarkably similar symptoms as you described with John. Much effort was taken to identify an allergen, ultimately sugar was the cause. Although he already had a low sugar diet, a sharp reduction in the consumption of fruits resolved his symptoms.
Ultimately, all healing comes from Jesus Christ. Bless you and John. May your perseverance in faith continue to grow that you continue to find the grace which brings joy, prosperity, and good health! Amen.
Thanks!
Just saw this, apologies for the late thank you!! It is so appreciated!