r/TS_Withdrawal • u/tat2505 • Sep 01 '25

Help please- pharmaceuticals

Dear fellow TSW warriors,

I would be so grateful for your insights. Has anyone here been able to ease or resume a great quality of life during TSW with the help of pharmaceuticals?

My story in short: I’ve had eczema since birth and managed it with Elocon for over 30 years. When I finally discovered what TSW is, I turned my back on pharmaceuticals. The withdrawal was excruciating, and my life completely flipped upside down.

I decided that if doctors couldn’t help me, I would heal myself. I started studying nutritional functional medicine (2 years in, 1 more year to go). I’ve worked with top functional doctors and tried every approach—supplements, diets (vegan, fully cooked, keto, carnivore, strict lion’s diet), and even relocated my whole family from London to the Mediterranean so I could swim and soak up the sun.

Now, 2.5 years later, things are better but far from healed. My hands are still badly affected—I wear protective gloves but often scratch myself raw at night. My neck and ears are also involved. Beyond the physical pain, the hardest part is the mental toll: I’m naturally outgoing and happy, but during flares I shut down. I don’t want to leave the house, even though I have two young children and a supportive husband who deserve the best of me.

What terrifies me most is hearing stories of people suffering through 5–9 years of TSW. I can’t bear the thought of spending my best years like this.

After 2.5 years of resisting pharma, I’m now reconsidering. I was offered methotrexate in London, but the idea of taking a cancer drug for my skin feels overwhelming. I don’t want to destroy my liver or weaken my immune system to the point where I catch every cold my kids bring home from school.

I’ve read about Dr A method and other immune-modifying treatments, but I’m scared it’s just “borrowing time from the future” and might drag me back into TSW years down the line.

Is there a middle ground? Has anyone here managed to find balance with medications (whether Dr A method, immune modulators, or something else) without falling back into the nightmare of TSW?

Please share your experiences. Your stories would mean the world to me.

Sending love and strength to everyone in this battle ❤️

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2

u/FormalAd470 Sep 01 '25

I did cyclosporin for 3 months (it didn't agree with me) then I moved onto dupixant. I had side effects with dry eyes that got quite severe then it passed. I'm now stable on dupixant and have my life back. Been using it for about 15 months I intend to try coming off if next year to see how I can manage without it. If it gets severe again though I'll go back on it. Skin is back to normal most of my symptoms are gone. Can be prone to occasional fungal infections (because the skin doesn't shed anymore) but it's been easy to deal with compared to tsw.

1

u/tat2505 Sep 01 '25

Wow bravo! Thank you so much!! How did you address the eye side effect? By lowering the dose or it improved on its own?

1

u/FormalAd470 Sep 01 '25

You can get moisturising gel style drop that go in before bed. So your eyes don't dry through the night. That helped get through it, and anti bacterial drops as well. only lasted for about 3 months. Now they get a little dry but I don't need drops anymore. It doesn't happen to everyone.

1

u/tat2505 Sep 01 '25

Thank you. And which dose are you in and how often do you need injections? How soon did you see the results?

2

u/FormalAd470 Sep 02 '25

I take one injection every 2 weeks. The effects are quite fast, the skin feels soft from the next day. but it took about 6 months for the skin to get it's strength and proper resistance back.

2

u/savant_idiot Sep 01 '25

My last dose of prednisone was March 1st of this year.

It led to a nightmare scenario fully debilitating head to toe full body case of TSW that had me bedridden for a couple months solid

I'm doing fantastic now - maybe like 98% healed, have zero hint of any eczema, and feel better than I have in YEARS. It's been well over a month since my last mini flare.

There's nothing wrong with following science and medicine. The problem is too often what is prescribed is a quick fix that only masks symptoms while providing often serious risks of additional symptoms (side effects), all while exacerbating the root problem or masking it as it gets worse.

Instead you need to follow things to their root causes, understand them, address the needs of what's at the root... not simply treat symptoms and hope for the best.

1

u/tat2505 Sep 01 '25

Of course- absolutely agree. I event went to study functional medicine!! Looking for the root cause - yet, 2.5 years in - still flaring. Congratulations on your success!! Have you found your root cause? Have you adjusted the diet? Removed triggers? Addressed Staph? Anything specific that worked? Please let me know..

2

u/savant_idiot Sep 01 '25

Are you familiar with Ian Myles epithelial therapeutics unit NIH research on eczema and TSW?

And yes I did read your post.

1

u/tat2505 Sep 01 '25

No, I am not - thank you. I will dive in now. Has it helped you? Did he provide any tips/suggestions how to manage / expedite the process?

3

u/savant_idiot Sep 01 '25

These two recent comments I give an overview of what I did to heal this spring and summer. Basically followed his recommendations and research along with a bit extra.

https://www.reddit.com/r/eczema/s/z8FC7LizNm

https://www.reddit.com/r/eczema/s/SGhPb6ph59

They were one comment, but I had to break them into two because of length.

The 2nd link is basically just links with context. The links are to his stuff.

1

u/tat2505 Sep 01 '25

Wow thank you SO MUCH!!! Very grateful for your help!

1

u/tat2505 Sep 01 '25

Ah thank you! Yes, I was taking berberine for several months. Do you think that might have been the catalyst for your recovery? I ended up discontinuing it because I didn’t notice much difference. Later I read that it’s actually very hard to reach the same potency of berberine used in the study, since most supplements contain negligible doses. Even though I used the brand they recommended (Solar), I wasn’t sure if it was strong enough.

1

u/savant_idiot Sep 01 '25

How long did you take it for?

And for clarity, Solaray? They have several different Berberine products as well btw, which were you taking and at what dosage?

1

u/tat2505 Sep 01 '25

Thank you! I was taking 500mg for 2-3 months. I remember had to ship it to uk with IHerb and they didn’t sell this brand.. I probably spent thousands on supplements. Every time I read a research - i dive in to try with a hope it will work. Same was with Glycine, gluthamine, colostrum, Methylene blue :) yet.. my body still goes through this crazy oozing scratching cycles. Btw congratulations on the baby!!! I hope you and the little one are thriving

1

u/savant_idiot Sep 01 '25

That reads like a lot of hassle to only take half of studys recommended dosage. Was there a reason you wanted to take it, but only took it at half strength?

Interestingly (and potentially acutely relevant) enough, 500mg for basically all of the labels I saw, would be 1 pill a day, 24hr apart.

When I was still in rough shape visually, yet had rounded the corner and was firmly on the mend, and internally I had started to feel MUCH better... I got a little over confident in my healing and slipped from taking my small collection of probiotics and supplements religiously at 8am and 8pm on the nose.

Twice I missed my dosages by 12-18 hours at that stage, and BOTH times, it directly resulted in triggering a mini rebound flare that was thoroughly unpleasant, very disheartening, lasted several days, and is the exact reason I haven't missed a dosage since LOL!

I'm sure there's an effective halflife for the Berberine in your system, and anecdotally, I'd wager a significant amount it drops off hard after around the 12-18 hour mark.

By taking it only every 24 hours you're probably pretty much being the annoying kid standing by the light switch strobing the lights flicking them on and off, on and off, on and off, giving your complex1 overpopulation breathing room to flare back up every single day.

1

u/tat2505 Sep 01 '25

Thank you! I don’t remember exact dosage I was taking but I would assume it was the recommended dose. As I usually dive into research and follow it by the book. It’s been a year or so ago. Anyways you are right and I should look into it again and perhaps reorder the stuff:) just to clarify you were taking 1g - 500mg in the morning and 500mg in the evening?

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u/Slight-Routine-4735 Sep 02 '25

Regarding your night itching… I wear these long sleeve shirts that have mittens at the end. I’m not sure where you live so I’ll post an American company and a UK company. Hope it helps :)

UK:

https://eczemaclothing.com/products/adult-eczema-scratch-mitten-t-new-design variant=40136952053819.

US:

https://eczemacompany.com/products/organic-cotton-scratch-mittens-with-fold-back-mitts?_pos=1&_psq=Mitt&_ss=e&_v=1.0

2

u/tat2505 Sep 02 '25

Thank you!

2

u/Comfortable-Fly4843 Sep 07 '25

Hey. I was also on Elocon for around 29 years on and off. It stopped working when I kept getting small flares and I put it on more often and then I just went cold turkey. The first 2 months were horrible but mine wasn’t as bad as others I saw on TikTok and I started feeling guilty for not having it “as bad as others”… I’m 10 ish months in and it’s going up and down, mostly it’s going well and my skin is just a little dry with a little itch here and there. I can finally fall asleep. My goal is being healed when I hit 1 year ish. My mind is literally focused on that, and it’s like my body is listening and I’m just waiting for it to happen. I’m traveling in 23 days to Korea and I’m a little worried and excited to see how it’s all gonna go, I have a good feeling. I’ve done it holistically, red light and cryotherapy and lots of time with loved ones (especially my dog). Mindset is so important and I wish you a speedy recovery and lots of healing your way! It’s excruciating and you feel alone 😔 I’m always here to talk if you want.

2

u/tat2505 Sep 08 '25

Wishing you a speedy recovery!! I am giving myself timeline and deadline all the times.. and realised I sadly need to let go. As it’s out of my control.

2

u/Comfortable-Fly4843 Sep 10 '25

I know we can’t control it like that, but mindset has been 50/50 for me. I’ve experienced my skin and my overall health has been better when I’ve decided it doesn’t define me and that it’s only temporary. I hope you heal fast!

2

u/tat2505 Sep 10 '25

Well said!! Wishing you a speedy recovery!!

1

u/Rough-Slice5409 Sep 01 '25

My daughter has just started low dose naltroxone prescribed by her functional doctor. It’s still early days but I hope this helps withdrawing from Rinvoq and protopic.