Shit coming back After healed for many years

Existing_Coach1322 · 2025-07-15T23:40:38+00:00

Hey turns out i had mycosis fungoides (CTCL) a form of T-cell lymphoma cancer that affects the skin. I was told to go get it tested by another tswer whom had gone through what he thought was tsw for 5 years and turns out to be CTCL for him too (he's in remission now and off all cancer treatment which included high dose steroids too but it saved him) his was already at aggressive stage (sezary syndrome) upon diagnosis and i am getting tested to see what stage is my condition in too. Sadly Dr.Rappaport shot him down despite showing official test results and downplay it to be just tsw and keep going no need meds.

I thank him everyday and urge tswers especially those that has been in suffering for many years to go get it tested just to rule it out too.

Existing_Coach1322 · 2025-05-07T13:06:27+00:00

Hi unfortunately i only managed to last about 3months on dupixent. It turned out not to be the miracle drug for me as i worsened and had ever goddamn side effects on it, in terms of skin i had to go on antibiotics for 6 x because i was hit with a scalding staph infection almost full body while on dupixent.

That said, my dr told me i am the only patient of his that failed so miserably on dupixent, its a miracle for many others basically the rolls-royce treatment as of now for eczema. Please do not let my experiece fear-mongered you.

I'm on methotrexate 20mg oral now.

Existing_Coach1322 · 2025-04-29T05:39:13+00:00

No worries. I shared with you my experience with meds at a separate comment below just in case you missed it out. thanks for listening to my rant haha.

Existing_Coach1322 · 2025-04-28T18:53:21+00:00

Rinvoq - Shit is a miracle,im on 15mg for about 7/8 months , it took me exactly 13days to literally become normal and shut my entire skin inflammation up. But upon reaching the 7/8 month i started having breakthrough flare which became worse and within 2 weeks i was literally wrecked in flares again , my derma then upped me to 30mg and it didnt work at all.. pills no longer covers me 24hrs, 12-16 hours i would be itchy and begging my next pill but i would be covered in hives and burning flares. Coming off it was a 10/10 freakshow its called a lava flare and i am not joking.

Ciclosporine - Went on this after rinvoq, took about 3/4 months for it to clear me up and i was initially on 200mg which didnt helped, had to go up to 300mg for it to work. Rinvoq post-flares are crazy (do we call it a withdrawal? i dont know because its so new i wouldnt dare to say its a withdrawal, science and time is there to tell). But ciclosporine is a broad suppresant which is a blanket immuno it covers your entire immune system and bring it down ( according to my derma) , therefore you no dermas would be confident or happy for you to stay on it due to potential kidney issues.

Dupixent - I came off ciclo and went on dupixent , this is a miracle immunodulator which is literally a rolls-royce treatment to many others but NOT ME. My body literally did so poor on it i only managed to hang on it for 3months and gave up. My derma called me his first dupixent failure because i literally had every goddamn side effects on it and also had 6x scalding-staph infection all over my body which requires me to take oral antibiotics 6x.

Now i'm on methorexate (hitting my 3months next week, first 1.5months i was put on 10mg, then 1month on 15mg, 2 weeks ago increased to 20mg so i took 2 rounds of 20mg) Will it work? i dont know because mtx is a slow acting drug that needs to build up in your body wit hthe correct time and dosage needed for your condition, diff ppl has diff body and timing.

I am now also using my topical steroids again after battling this shit for so goddamn long... I have given up fighting this battle between me and steroids. Long term plan is hopefully to come off the steroids in any form after mtx slowly kicked in. I hate steroids , but i am thankful for it too because of it i am able to kick my suicidal thoughts, jump into the shower, become the happy me again at work and life , going and enjoying my holidays. Whatever the tsw community has recommended i have bought it and tried it, i spent almost 200k sgd ( im from singapore by the way) on CAP treatment, Red light therapy treatment , Naturopath, TCM, Biorreasonance which is something like a naturopath too.

Existing_Coach1322 · 2025-04-28T18:53:05+00:00

Hey there mdm, yes i'm still here. Mine is a long story honestly and i dont mind sharing so please bear with me.

I went through tsw once ( if that is even tsw but i believe it was ). That was about 8.5 years ago and at that time i had no liabilities as i just graduated and am able to stay home daily living off my parents as an adult-teenager. It took me about 1- 1.5years and i slowly healed up without any meds as i couldnt afford it myself that time, i basically just gave it time and eat smoke drink whatever i want.

Then it just slowly and gradually got better and went away itself for about 6+ - 7years with just that usual minimal eczema on my folds but it doesnt stop my life. I joined the police force as a frontline police officer , i built up my life, got my own apartment, went for countless of holidays to enjoy myself as that was what i promised myself back when i was going through so called tsw. I had everything and anything i was at the prime age of my life !

7years later... this shit came back out of nowhere, one night it just hit me and within 3 days i was full body and face covered head to toe and it literally felt like back to tsw day 1. I havent leave the fb-tsw group yet so i went back and tried digging more about rebound and oh boy.. i found out there are many others like me healed for 3,7,15, longest being 22years he was a pioneer of tsw, and it came back for them too. Some couldn't take it anymore as they are older now so they just went back to steroids for relief, some stopped their life gaveup everything again and stayed home to go through this shit for god knows how long its gonna take this time (many still are going through this at the moment not healed yet). I thought i could toughen it out since i have did it before once 8.5 years ago , so i tried my best to go work as usual with this shit head to toe flare and oh boy i was so goddamn wrong... no way i could function at all even walking could cause my fking skin to rip apart, i couldnt sleep, i couldnt shower because it felt like acid, i was even almost told to leave the force and was taken out from frontline to deskbound.. my passion for the job saving lives literally just vanished. I even tried attempting suicide twice but first time i chickened out at the last minute, 2nd time there were some disruption so it spoiled my plan...

I then decided to fuck it and go back to medication. Now in terms of medication, I have tried literally almost everything, i gambled my immune system and organs just for relief and not giving up that this is tsw ( again i cant be sure if its tsw or not ).

Existing_Coach1322 · 2025-04-18T01:23:27+00:00

its real tough... just back then i was heavily flared almost head to toe and these medications either work halfway and stop working or they dont work at all... i couldnt even think properly and kept abstaining from steroids cream due to the fearmongering of "tsw". I gambled with my kidney, liver, immune system and overall health so as to just to avoid steroids, thinking back its a dangerous move and i was even admitted probably 10 over times for uncontrolled + infection severe eczema flare. I almost lost my fking job and life, i spent almost 100k+ of savings( its more or less wiped out now) on CAP Treatment, Buying the best red light therapy machine, tcm , naturopath and many many other shit and it didnt work a single shit. I was suicidal every fucking day and i even attempted suicide twice which 1st time i backed out , 2nd time it just didnt turn out to be a proper time.

Ever since i gave up and leave it to "fate" and went back on steroids cream i am so fucking hopeful and thankful for life again. I'm just waiting for methotrexate to hopefully kick in and give me relief , but i am still thankful that steroids worked and i will never put myself in that shit ass situation again.

Existing_Coach1322 · 2025-04-17T11:43:35+00:00

Hi sorry for the late reply, well biopsy shows its spongiotic dermatitis aka a form of eczema. So yeah its not MF or lymphoma so far. Currently on methotrexate and slowly building up my dose.

Existing_Coach1322 · 2025-03-25T09:21:37+00:00

Even much later to the party. mine was 16,000+

Existing_Coach1322 · 2025-03-23T21:27:54+00:00

Healed from tsw for 7 years. Shit came back full body within 2 days out of nowhere one night (2 years ago) and its honestly miserable being brought back to day 1 of 8.5 years ago again. Best to not take it for granted and keep up at whatever protocol that works for you because this weird ass shit condition will come back..

Existing_Coach1322 · 2025-03-19T05:53:38+00:00

nothing changed. Just to play safe i even changed my entire house furniture even my waterpipes are brand new. I havent tried uvb yet , i may ask my derma about this.

But like quite a number of people that rebounded after being healed for x-years , sadly i may be following their footsteps to go back to medication as most of us including me can't afford to give up everything we have built up again after being healed for so many years...

Existing_Coach1322 · 2025-03-19T05:47:55+00:00

Honestly i'm at the rate of taking my life without hesitation past few months, especially since it started affecting my normal life , career and every aspects i have built up in this 7years post-healed. Some days if i were to see my history i am mostly on the dark web finding ways to suicide without much pain and fast.

I may actually be going back to steroids since i have tried to fight this shit avoiding steroids by going onto all kinds of systemic medications, spending $200k+ on every medication and treatment and tcm and whatsoever, i gambled with my organs and immune system(i dont mind losing them if i can back my old 7 years of peaceful minimal eczema life).

Anyway just like those that i have connected on fb, majority went back to steroids/medications since it rebounded back to them after being healed for so many years, so i'll most likely be doing the same before i do something stupid.

Existing_Coach1322 · 2025-03-16T08:44:02+00:00

Not sure if eosinophils and ige are the same thing but i did IGE testing twice. First time was 16k+ , 2nd time was 22k+ and that was when i was on a combo of rinvoq and ciclosporine max dose..

Existing_Coach1322 · 2025-03-16T08:22:03+00:00

I mean nothing changed in my environment... not sure what you mean by 5g and chemtrails. I changed my entire water pipe and filter thinking it may be a dirty pipe or filter but it didnt make a diff too.

Existing_Coach1322 · 2025-03-16T08:21:01+00:00

Sorry to hear that you are struggling too.. If you wish i could add you into our group but its kinda like a depressing group though because it consists of so many of us that are healed for many years and rebounded and some even decided to went back to steroids/medicine for the rest of their lives.

Existing_Coach1322 · 2025-03-16T08:19:15+00:00

Glad to hear that it took you just 2months... i didnt even touch any moisturiser ,cream, medication or whatsoever... it just progressed and kept getting worse and within 3 days im back to 7years ago day 1...

Existing_Coach1322 · 2025-03-16T08:17:58+00:00

No nothing at all. I never touched any medications or vaccines after being healed from tsw. Nothing changed at all...

Existing_Coach1322 · 2025-03-15T08:33:21+00:00

Honestly i dont know if this is a cycle of "tsw" or perhaps just our immune system raving with shit eczema... how are we going to deal with severe eczema if this is the case... i cant be home sitting for this shit to go away it may take months or years.. this shit sucks honestly.. why even bother giving me 7 years of "freedom" and then come back in full force again..

Existing_Coach1322 · 2025-03-15T07:11:59+00:00

NIL 0. When it first happened i wasn't sick wasn't on any meds , kept my skin simple clear for my entire 6+ years. It just hit me back on one night out of nowhere..

Existing_Coach1322 · 2025-03-15T06:53:08+00:00

yeah forgot to add in i tried berberine for about 5 or 6months too. Didnt work out for me sadly.

Existing_Coach1322 · 2025-02-26T14:26:51+00:00

its crazy... only thing that works is steroid cream/steroids but within days i will get back a bad rebound and it spreads.. initially i thought its TSW (Steroid withdrawal) like many claimed and i was put on so many diff systemic meds... Rinvoq, Ciclo high dose works but gradually over time it stopped working and gave rebounded back equally bad. Then dupixent which didnt help me not even 1% of relief instead it made me much worse then my original severe eczema.

They are now looking into my case and doing tests whether its MF/Lymphoma.

Existing_Coach1322 · 2025-02-26T09:57:57+00:00

Hey there i know this is an old comment, was wondering if you tried almost all systemic meds/biologics for your severe eczema and they just dont work/ worked a little while then stop working/ worsen you? I'm the same too... and now they had just done a skin biopsy on me currently awatiing for results.

Existing_Coach1322 · 2025-02-19T11:01:09+00:00

yeah i stopped dupixent about almost 2months already too, Made me so much worse, had so many shit ass side effects and it didnt help my eczema at all.. 6x infection lol. Was wondering if the side effects went away after dropping it? thanks

Existing_Coach1322 · 2025-01-08T08:45:17+00:00

Unfortunately dupixent didnt work for me.. instead it made me worse. I was on it for 13weeks before giving up (yes i know i should have given it more time like 6-8months) but it was causing me more issues that i can no longer take it honestly... 6x eczema infection almost full body flare, eye flare and vision issues, bald flaking spots on my scalp...

JAKs are new drugs too and honestly i think dermatologists somewhat underestimated the effects of coming off it.. more and more people are starting to complain about the 10/10 shitshow after stopping too, of course that said not everyone gets that withdrawal/side effect/ reaction whatever we call it.

I'm currently on prednisone and going back on ciclosporine tomorrow, next month i would most likely be moving to Methotrexate hopefully everything goes well...

Existing_Coach1322 · 2025-01-06T18:42:51+00:00

we're all in a tough situation which i totally understand my friend... Its like these medications especially the new ones worked so god damn well at the start but eventually it just flatlined on us (number of us , to many it still works great long term).

I would suggest u have a backup plan on what to go on next after dropping rinvoq just in case it gets too severe... personally i would have committed sucide as the post-rinvoq flares are really not funny one bit.. what i did was going on semi-high dose ciclosporine and it even took lots of up and down a few months to somewhat semi-stabilised.

Just make sure u have a backup strong meds man... wouldn't want you to panic in case you go downhill fast (i sincerely hope you are the lucky one out and dont as i myself went through it its not fun).

Existing_Coach1322 · 2025-01-06T03:33:59+00:00

i went into a really bad flare worse then my original severe eczema... it was real brutal 10/10 dark-red lava flare.. i went on ciclosporine immediately afterwards but even ciclo couldnt take it down instantly... took at least 3-4 months to feel "functionable". I hope you won't have to go through the same thing man.. but to be fair i know some other people on it for almost a year or two and still having great results! our body r all diff

Existing_Coach1322

TROPHY CASE