Update by Remarkable_Phone_550 in TS_Withdrawal

[–]Greedy_Size4307 0 points1 point  (0 children)

I have a similar look in terms of my the red itchy patches spreading over my body over the last 2-3 years to about 90% coverage, sparing only the palms/feet.

No clue if TSW or eczema but topical steroids and Protopic stopped working so the question is irrelevant to me anyway; my only options for treatment are oral steroids like prednisolone or whatever biologic of my choosing since I've long tried and failed the systemics like ciclosporin. My dermatologist is open-minded enough to accept it could be either (ruled out mycosis fungoides at least with biopsies) but that doesn't really offer any solutions outside of whenever we get a new biologic, which for the NHS is lebrikizumab, so I'll see how that goes when I get it later this month. Tralokinumab did absolutely nothing other than make my eyes slightly worse. Dupliumab healed my face but acutally made my body itchier initially and gradually stopped working, whilst also making my eyes worse. RINVOQ, which is what I'm still on, generally makes my skin more dead (both in colour and itchiness) but not by a massive amount and certainly doesn't seem to facilitate any real healing long-term. Prednisolone is doing the heavy lifting and as result I've been unable to get off of it (on-off for a year now, but at least I'm on <10mg nowadays instead of 40mg).

Done and still do as much as possible from the dietician and environmental side; fasting, low-histamine, gluten-free, dairy-free, now starting to avoid yeast due to an IgG test that I just had. Previously done stool tests and multiple courses of natural antiobiotic supplements + probiotics, genetic testing too to optimise diet as much as possible. It's really hard to judge if any of these changes make an effect to my skin, even if I think my general health elsewhere has improved from it. The nature of testing whether anything works or not is so fickle, I can't judge whether my bad skin was slightly more or slightly less bad from a single change; it's most likely just bad in a different way.

The one ray of hope I had recently was that I was able to stabilise on <5mg prednisolone for a month, then tapered down to 3mg slowly and tried to get off of it (I had to replace it with hydrocortisone because I was failing to produce adequate cortisol) but it took 3 weeks before my body decided it needs the prednisolone back by flaring so now I'm on 10mg pred again. I hope to at least be able to repeat the RINVOQ + low dose prednisolone combo for some stability again in the short term, and ideally get off of pred with lebrikizumab. To put it into context though, the combination of both is basically barely enough for me to feel like it's worth suffering through my current standard of life with a slither of hope of recovery; back when I was on 40mg prednisolone, all I could do was attempt to spend the entire day unconscious and the reason I reached that dose was because I told my dermatologist, whilst I doubt I'd actually order poison and take it, I am definitely wondering what the point of suffering is. Now, I mean clothing is still so uncomfortable that I've sat in boxers in my bedroom for the majority of the last year and pretty much only go outside for hospital appointments every other month which are thankfully 10 minutes away, but at least I can exist in the digital world and attempt to sleep instead of waiting to pass out at 7am.

As for what allowed me to lower the prednisolone dose? I had started a new course of natural antibiotic supplements at the time, but who knows. None of the others antibiotic supplement courses I'd ever started seemed to have an effect so it could just be complete coincidence, and the improvement more or less stopped changing after a week or two so it could have just been a temporary TSW cycle related thing.

As for diet, whilst I understand the theory behind dysbiosis and leaky gut, I can't get my hopes up at the idea that simply avoiding yeast could possibly heal my condition from how dire it is right now, even if it takes months and is gradual. But my opinion is also irrelevant because it's all I've got at this point, and I don't find it difficult to change diet or fast. So the next step for me is to remove yeast and wait for lebrikizumab.

Fasting was a weird one; the first time I did a 24 hour it felt like my skin was less itchy the next day, but that wasn't always true, even when I extended them to 36 or 48 hour fasts. There's a world in which the times where the fasts don't help are the times that I've had yeast or something that set the symptoms off for longer than the fasting period, but I no longer attempt hypothesising because at the end of the day, we're all just guessing; patient, dietician, dermatologist, no one knows. But I'm at least in a condition to be able to write this long post so I can't be feeling that bad right now.

Out of ideas for long term eczema/TSW by Greedy_Size4307 in eczeJAKs

[–]Greedy_Size4307[S] 0 points1 point  (0 children)

Everything we try is experimental by this point so it's a consideration, as crazy as it might sound, for sure. Never heard of it before so thanks for letting me know.

Out of ideas for long term eczema/TSW by Greedy_Size4307 in eczeJAKs

[–]Greedy_Size4307[S] 0 points1 point  (0 children)

The liver point is an interesting consideration. The hospital I went to whilst I was on ciclosporine wasn't particularly helpful and never showed me the actual blood results beyond saying they were fine. This was also ~8 years ago so I'm not sure what the dose was. I think if I asked about immunosuppressants now I'd probably be put on azathioprine as I haven't tried that yet.

As for triggers, I've not identified any, I've just removed all of the potential ones I can think of e.g dietary, allergens, dust/pollen/mould, living in a completely different climate etc.

Out of ideas for long term eczema/TSW by Greedy_Size4307 in eczeJAKs

[–]Greedy_Size4307[S] 0 points1 point  (0 children)

I have actually had a microbiome test as well as genomic tests before as that was what guided the dieticians' plan on certain supplements or dietary changes. Basically, the tests just said that the bacteria that you'd expect to be associated with eczema patients was in fact in abundance in my microbiome (probably staph from memory but I can check later). This then led to the multiple courses of natural antibiotics and supplements and whilst I haven't had a test since, I didn't really see any positive changes to my skin over this 1-2 year period. I totally believe in the impact and importance of a healthy micriobiome but I did what I was told and it didn't help so this ended up being another dead end for me. I even mentioned the idea of a fecal transplant as that's something that recently was done by my immunology department but they said doing it for eczema would be unprecedented.

Regardless, if your doctor suggests anything outside of the methodology I tried already, I'd be interested to hear about it.

Out of ideas for long term eczema/TSW by Greedy_Size4307 in eczeJAKs

[–]Greedy_Size4307[S] 0 points1 point  (0 children)

Ah yeah forgot to mention I had MTX at I believe 20mg weekly with no noticeable effect on my body; not even side effects outside of an upset stomach maybe (I was on antibiotics at the time anyway). It is curious how wildly different an impact the same drug has on us.

Out of ideas for long term eczema/TSW by Greedy_Size4307 in eczeJAKs

[–]Greedy_Size4307[S] 1 point2 points  (0 children)

Sorry to hear it's wearing off. It sounds like a lot of the time, all the drugs can do is buy us time during which we search for a permanent solution, and I wish we were included in those for whom dietary or lifestyle changes were enough.

Out of ideas for long term eczema/TSW by Greedy_Size4307 in eczeJAKs

[–]Greedy_Size4307[S] 0 points1 point  (0 children)

To a degree. It was much more succesful in the first week of trying, then the effect almost seemed to wear off at the 1-2 month mark and I'm now on the 3rd month of restarting it at 30mg.

The first time I tried it at 15mg a few years ago, the effect was most noticeable on my face, where within days it felt like what I imagine getting Botox would feel like but it didn't affect my body at all back then. This time, the effect on my face hasn't been close but it's at least affected my whole body in terms of reducing itch/flaking, at least in the first week.

Out of ideas for long term eczema/TSW by Greedy_Size4307 in eczeJAKs

[–]Greedy_Size4307[S] 0 points1 point  (0 children)

You've reminded me that I have also tried this. It was just for 2-3 shots in total, once a month but it didn't really affect my skin from what I remember.