Wednesday, June 25, 2014

6 month anniversary

Last night marked my 6 month anniversary of being off topical steroids! And I still look like shit! Lol. No but seriously...I wonder how long this is going to take. I've been in communication with Dr. Rapaport for the past few days. I went ahead and paid up for a consult, which is actually more affordable than one might think, but you can get all the information free from me! The consult was $500 for 2 hours of his time and we've only emailed so far (I sent him a detailed history of my eczema along with loads of pics) so I can't imagine I've made too much of a dent into those 2 hours. But considering most psychiatrists charge around 200-250 per session, this is pretty much the same cost. So this is what he's told me so far:

1. First of all, he does not believe in any alternative methods such as diet (gluten-free, dairy-free, like me), dead sea salt baths, tea tree oil, bleach baths, etc to treat TSW. This I disagree with, obviously, as I believe diet plays a major part in our skin condition. It may not affect TSW directly but it definitely affects MY eczema, which leads me to believe I may still have eczema once this is all over. I also believe the dead sea salts are super beneficial, so while I appreciate his advice, I'm taking it with a grain of salt. No pun intended.
2. He recommended 3 tepid baths a day at 30-40 minutes each "without fail"!!! There is no way in hell. I start getting itchy after 15 minutes. I have been bathing every other day and the days I do take baths on, it takes me hours to recuperate. His reason for this is that since the steroids have caused major opening and dilation of our blood vessels, the only way to counteract this is to get the skin blood vessels to constrict with cold water and ice packs. But then he said that baths are also a means of relief from the burning and itch. I no longer suffer from the burning and the itch is actually not that bad since doing moisturizer withdrawal so I'm on the fence about whether or not I should increase my bathing. Hubby recommended trying to up it to once a day and see how I feel. Lastly, when I expressed my concern to Dr. Rapaport regarding all this bathing, he said he believes I may still be in the BEGINNING of withdrawal since my skin hates water so much. If this is true, I will die. He gave me an estimate of 1-3 years to be healed based on my total usage, with functionality occurring much before I am fully healed .
3. Speaking of moisturizer withdrawal, he did recommend moisturizing but said it was not necessary.
4. He recommended getting prescriptions for drugs I already had (gabapentin for nerve pain and atarax for itch)
5. Lastly, sun will be super beneficial but he believes my skin is not yet ready for sun exposure.

This does not encompass everything we discussed but covers the major points. I will update more as I get more information. At the moment, I am to check in with him in 7-10 days with updated pictures as he cannot tell if I am getting better or worse. I feel my skin has been stagnant, with some flares in between and very little healing but am told by family that I look better. I certainly don't feel it but will keep on keeping on in the meantime.


  1. Sigh... The frustrating thing is everyone is so different! I will not, will never EVER take 3 tepid baths a day for 30-40 minutes!! Hahaha. And the fact that it's on my face makes a bath nearly pointless. The baths give me horrid anxiety! I start to get burny and itchy and nearly shoot up to the ceiling with angst. And I disagree with the diet as well. Most of us started out with atopic dermatitis or eczema and I believe both stem from either leaky gut or allergies. This is off my 20 years of experience with it. I really hope the consults are worth it!! Look at me sounding so negative... I hope you don't take it that way! I think Dr. rap is brilliant and saved my life, so I'm sure your consulates will be worth it over time. I'm at 4 months next week and I still look pretty rough.

  2. I think we're all a bit negative going through this :) but i totally agree, I took ONE tepid bath and it was brutal. I'll go back to warm, thank you very much! I do hope the consult is worth it but already I'm skeptical of doctors, especially ones that say diet has no effect on us. I'm also of the thought process that our skin issues stem from the gut. So we shall see! Will keep you posted :)

  3. When I very first started TSW itching from the evil deep skin itch gave me hives. That burnt and stung like hell in the shower
    When I applied Ice to the hive things they went away. They haven't appeared again but now I can take baths and showers without pain. It's amazing!
    I wouldn't take 3 baths a day simply because of the water bill lol but i have found heat helps just as well as Ice for me. Dr Rap did acknowledge in a teleconference that heat is worth trying if cold doesn't work
    I also agree that diet is important for the patches of "true eczema" but not necessarily for TSW
    Anyway I enjoyed your post and will add your blog to my blog roll

    1. Thanks Wynter! What's your blog so I can add you as well? For me, heat feels awful but I'm attached to my ice pack like nobody's business!