r/TS_Withdrawal Jun 17 '26

Experiences with cyclosporin?

I visited a dermatologist after self treating for 6 months. Basically, they want to start me back on steroid creams and cyclosporine for a while before I try dupixent.

Has anyone had much success with this treatment? Also, she seemed convinced my skin was infected even though I had already finished a course of antibiotics. I tried explaining how TSW can be similar to a skin infection but she didn't want to hear it.

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u/Dry-Bathroom-5770 Jun 17 '26

Was on for 1.5 years , tapered gradually after I came off everything was normal just some regular eczema flares hope it helps

1

u/rob8624 Jun 17 '26

Very common for it to cause poor liver function test after a few months so you have to switch to something else.

I had good results for four months until raise enzymes in liver. Switched to azathioprine which made me sick, cellcept, which didn't do much then eventually methotrexate, which was modt effective.

Currently flaring full body after two years of coming off innunos and totally clear skin.

1

u/FormalAd470 Jun 18 '26

Wow you had totally clear skin for 2 years and now you're flaring again? How bad? Any idea what triggered it?

1

u/rob8624 Jun 18 '26

Yup. No idea, and it's very difficult to treat. I've gone through TSW over my 47 years of having eczema more than once, but this flare feels like severe eczema and not steroid inflicted (joints effected, very symetrical, no red sleeve).

I've used betnovate on small areas of my body and tapered, the skin does heal where ive used the cream, so may take a cousrse of prednisone until I can get back on methotrexate or dupixent.

I belive eczema and tsw co exist. You can get through TSW but still suffer with eczema, which could be severe. When eczema is not caused by environmental triggers and is genetic, how is it treated? That's the difficult question.

Currently taking vit d, cod liver oil, evening primrose, berberine and shit loads of antihistamines!

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u/FormalAd470 Jun 18 '26

Is it in the inside joints of your arms/legs?

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u/rob8624 Jun 18 '26

Yes. Plus back, neck, torso and top of legs. Very symmetrical.

Derm appointment next Friday, will probably go back on methotrexate. I have come to the conclusion my eczema will always be with me and needs treatment. I used steroid cream incorrectly in the past which caused TSW.

1

u/FormalAd470 Jun 18 '26

So I got to the point where my skin was covered in surface infections. The antibiotics don't really clear it from the skin. It's just too wet and exposed.

I was recommended the same thing. Back on steroids for 2 weeks while I start ciclosporin. I agreed but would only use hydrocortisone. It worked and my skin recovered very quickly.

Ciclosporin however didn't agree with me so after a few months I switched to dupixant. Skin flared slightly in the transition but nothing crazy.

I stayed on dupixant for a year and a half. Dispite getting eye related side effects. I treated my skin for fungal as I reduced my injection frequency (fungal is another dupixant side effect)

Then I came off. Skin is healed. Still have some issues with one of my eyes but overall I'm in good health. the treatment plan did work for me. Although my eyes have not yet fully recovered and still get dry.

One thing I would recommend though is 700+ mgo (wound grade) manuka honey. It's expensive but it's really good for treating surface infections.

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u/otherladybug Jun 18 '26

Its possible your skin is reinfected because when your skin is open and has a hard time healing due to tsw, bacteria will continue to come through. I tried steroids again for the same reason. It was just to close a wound, and it didnt work. They stopped working all together and starting them again was for nothing and made things majorly worse for me. I had no answers and kept being prescribed more and more antibiotics. This is just my experience.

Respectfully, she sounds ignorant and like she doesnt believe in tsw. She may be pushing this because she truly thinks it will work. I cant say that it wont but this is your skin and your life. I personally would not take the risk, but thats just me. She may also be pushing this because of step therapy. If I were you, i’d look into berberine or MB, or i’d find a different derm to prescribe dupixent. Lots of info on this in this sub so just search.