When I started my TSW/PW back in 2008, the first few years were a total roller-coaster in the darkness. In recent years, I'm still on that roller-coaster, but in the light - I can see where it's going more or less.
The pattern of my symptoms has changed over the last 9 years. From oozing crusts to dry patches. From "strange" flares to herpes infections. From the unexpected to the expected. Most notable change of all is that the side effects of tacrolimus, trade name of Protopic(PT), have become more evident than ever, after the TS adverse effects have seemingly gone away.
Protopic is a powerful immunosuppressant with unknown history of long-term effects. The molecular size of PT is bigger than TS. It's invented as an alternative medication for atopic dermatitis to avoid the side effects of TS. My dermatologist prescribed me PT saying, "Unlike steroids, Protopic doesn't have any side effects". Well, he should've elaborated the information more: PT doesn't have the side effects of atrophic skin or capillary dilatation which TS can cause, but comes with other side effects you need to be aware of, and honestly, there isn't much data.
One of the problems of PW is that there isn't much information about it at all. Apparently, there aren't many PW sufferers and even TSW doctors don't often talk about it. The discourse of Red Skin Syndrome is centred around TSW, and PW feels like just a spin-off. This is fair enough. Most people going through PW have used TS at one point in their life. I did too. However, I've always considered myself going through more of PW than TSW. This is because I used TS for only 6 months as it never worked for me, but PT for 2 + years as it worked magic.
Dr. Kenji Sato says in his book that PW is often more complicated and takes longer to heal than TSW. His data shows that patients who used PT in addition to TS stay hospitalised 5 days longer than the ones with just TS. He also confirms that the PT affected skin is more oozy than TS-affected one.
My main PW symptoms include incessant herpes infections and nerve pain, severe conjunctivitis and fatigue. Basically the low immune system. The most annoying problems have been herpes and nerve pain. Pain is exhausting and often I have no energy. To battle off herpes virus, I have some advice from Dr. Sato and would like to share it in the next post.
Recent research shows the possible connections of the herpes virus to depression and fatigue (including chronic fatigue syndrome, another article). I always thought my extreme fatigue and depression during the winter was because of my laziness and weakness. But I've reached the point that it only makes sense to me if it's due to the viral infection. As one evidence, the anti-viral tablets seems to alleviate or completely get rid of my mood problems as well as my skin infection.
It is often believed that the side effects of TS cease with time. But, Protopic? I don't have the answer yet. Dr. Sato says that the adverse skin reaction to infections (such as herpes) become less as infections repeat. I hope this to be true, because my PW symptoms haven't improved since I quit.