For Your Doctor
Most of us suffering with TSW have experienced a doctor who refuses to acknowledge our condition. I came to my doctor prepared on our first visit with printed research articles about TSW. That visit was a bit contentious, and we were not seeing eye to eye. My second visit, however, showed great improvement. My skin looked worse, haha, as I am at my worst, I think, but he and I got along quite well. I came to him this time with ideas of what he could do for me. I was interested in certain lab values as I was following most aspects of NMT, and he gladly ordered them. This time he asked for more information about TSW. I was ecstatic. Here is the email that I put together for him for educational purposes. If you feel that your doctor would benefit from this information, feel free to copy and paste it. Let me know if you have any suggestions for things to add. Keep in mind that a doctor might prefer things in a professional format.
Also, I have the UK TSW Position Statement that helped me to get an official diagnosis of TSW.
Follow @sashibot on instagram for updates.
UK Position Statement on Topical Steroid Withdrawal. Click to download the pdf.
UPDATE April 9, 2021. My doctor has officially given me a diagnosis of Topical Steroid Withdrawal! Woohoo! I convinced him over many visits. I brought him some of the research articles on our first visit. Then I sent him the email below after our 2nd or 3rd visit, when he asked for more information. And on my last visit (maybe my 5th or 6th) I printed out and handed him the UK Position Statement on TSW. I print things out and hand them to him on our visits and it seems to have more of an impact. I will make this page better looking soon so the materials are easier to digest so other people can use them to maybe sway their doctor. :)
Dear Dr. Thio,
Thanks for the appointment yesterday. As requested, I am sending you more info on Topical Steroid Withdrawal. I am really hoping we can make some progress together in getting me through my current nightmare.
Here is an excellent video that goes over the symptoms of TSW, in detail. There are, of course, eczema overlaps. And sometimes the condition is called Steroid Induced Eczema or Red Skin Syndrome (people of color do not get red, but sometimes a darker color of their skin tone, so TSW is the most commonly used). This video was made by Dr. Heba Khaled. She is a dentist and also has a degree in Biomedical Science.
The information for Dr. Kenji Sato is a little harder to come by, as much of it is in Japanese. But this is a breakdown of the NMT (No Moisture Treatment) protocol used in an in-patient hospital setting at Hannan Chuo Hospital in Osaka, Japan. I follow some of it, but not all of the protocol as I cannot tolerate exercise, yet. His patients are in the hospital for around 3 months. I posted the protocol below online as translated by one of Dr. Sato's patients, Tokuko Kameda for the TSW community.
Here is a section for doctors on the ITSAN (International Topical Steroid Awareness Network) website. There is a lot of information about the condition there. And this organization is recognized widely as a great resource and advocacy group for those who suffer from TSW.
https://www.itsan.org/tsw-for-doctors/
Here is the link to all of the research articles I have gathered on the subject.
https://www.sashibot.com/research
I think the connection with nitric oxide is important. Dr. Rapaport at UCLA in Los Angeles talks about this.
http://www.red-skin-syndrome.com/
http://www.red-skin-syndrome.com/nitric-oxide/
And I have gathered research articles specifically on this connection, as well.
https://www.sashibot.com/nitric-oxide
Here is a food list that I cobbled together from online sources to help keep my nitric oxide levels low. I believe this is why I have been able to avoid the oozing that so many TSW sufferers experience. I have only had it a few times, when I have “cheated,” on my diet for a whole day, as opposed to a treat here or there.
https://www.sashibot.com/no-food-list
And finally, I did have an online consultation with the Singapore Skin Health Centre. Their website is under construction, but here is an article from a patient, Louise King, who went to get treatment there for 3 months. They use High Pulse Blue Laser there.
https://balmonds.co.uk/blogs/blog/how-to-get-through-tsw-going-to-singapore
Thanks again for your interest. I’d love to hear your thoughts. See you again in a few weeks!
Best,
Sasha
Other great resources: