Topical Steroid Withdrawal | First Month Update

(image: Pinterest)

Hi ladies! Wow, what a bumpy ride I have been on since starting TSW! Despite knowing what to expect in general thanks to the very few resources for TSW sufferers such as ITSAN and that amazing support group on Facebook, nobody lives the cycles and flares the same way so it is hard to predict how my body will act from one day to another.

I am currently on day 45 (I am actually counting the days since my very first flare, on March 9), which means a little bit over a month. These have probably been the longest days of my life so far, although now that I reflect on this period, everything seems like a blur, so... unreal! It is truly tragic how from one day to another I did not recognize my own body...

I remember how devastated I was when the first flares occurred but now that I think about it, it really was not that bad until... the beginning of April, I would say. I forced myself to take pictures to be able to keep track of my progression, although for now, I am not comfortable sharing them here. Maybe when I will feel better overall, but for now, even taking pictures is a struggle. I haven't been able to take some since two weeks because I look and feel so ugly and disgusting.

So to sum up my first post about TSW - it all started with a swollen and oozy face, which happened about three times within two weeks, but the last facial flare was a bit different since it calmed down quite quickly, although this time, it would not stop oozing. At the time, I was using calamine to dry up the ooze which worked but I quickly gave up since calamine made my skin dry and tight, and it gets hard to remove after a few applications. The ooze eventually dried off by itself, causing dry, tight and flaky patches of skin. It was so uncomfortable, even coconut oil and natural balms would not do anything, so that is when I decided to start moisturizer withdrawal as well.

Let me clarify something before I continue - what is a flare exactly?

During a flare, your skin may experience an increase in redness, intense itchiness, hives, swelling, or oozing. When this happens, your symptoms may continue to increase in severity for a period of time. Your skin may also seem stuck in a “holding pattern” of bad skin or at a plateau without improvement for a period of time. 

Flares can last anywhere from a few days to several months. When a flare eventually subsides and you enter a break, the skin becomes dry and flakey and you may shed a lot of dead skin. During a break, your skin may also feel tight, like plastic, or very rough. The redness may decrease in some places and oozing may decrease as well. You may be somewhat less itchy during a break. 

The cycle of flares followed by breaks usually occurs many times until you are fully healed. You may notice a pattern to the flare/break cycle. For example, skin may ooze during a flare, then become flaky and dry during a break. Some people may never have a true break and experience milder, long-term symptoms until fully healed.

(sourrce: ITSAN General TSA Q & A)

I am believeing my face was stuck in said "holding pattern" for about a whole month since after the last flare started, the dry skin and flaking gradually subsided in place of more and more and more ooze - it was absolutely crazy, uncomfortable, disgusting and painful. At one point, my face was completely red and raw, as if the first layer of my facial skin has been burned. It was extremely painful since it was like an outer layer of fresh, red and raw skin was exposed - add to that constant oozing that I would let dry to a disgusting thick crust. Even my eyelids were oozing, and in the morning, I was not even able to open my eyes since they were crusted shut.

After a week of this, I am ashamed to admit that I almost gave up. This is why I will always be thankful for the support group on Facebook, full of guardian angels who would never fail to pick me up when I was feeling down. I was really scared to use anything on my face since it was so sensitive, but at the same time, the tightness caused by the crust of dry ooze was almost unbearable, at night because I had no choice but to sleep on my back since I did not want the ooze to stick to my pillow, but especially in the morning. I knew moisturizing was not the answer, but when a lady suggested zinc paste, I was sceptical at first but after a bit of research, I realized it was worth a try.

I was sceptical because zinc oxide is an astringeant like calamine, which was uncomfortable on my skin, but the zinc paste I was recommended is Atlas Ihle's Paste 25% Zinc Oxide, which also provides topical protection and treat minor irritations (such as diaper rash, chapped skin and minor cuts) thanks to ingredients such as mineral oil, lanolin and white petrolatum. I have always been against using anything like petrolatum, mineral oil and especially lanolin on my skin but in this case, I had to do something - I was so desperate. I could not find the original Atlas paste at the drugstore, but I did find a store brand version with the exact same ingredients in the exact same amount (it is important to use a zinc paste with the highest amount of zinc oxide possible).

It was a mess to apply the first few times because my face was so wet from the ooze, so the zinc paste would just melt off my face. I eventually got the hang of it and it was such a relief! Finally, I was able to move my face without it cracking or having ooze drip everywhere! Of course, the paste did not miraculously stop the oozing, but it made my life less miserable. I was not dreading the morning anymore, and since the zinc paste goes on white, it actually concealed my bright red and oozy face. Oh and the weird clay scent was amazing compared to the stinky ooze that would drive me nuts!

I have been slathering on zinc paste every morning since two weeks and it has really been a godsend.  I used to dunk my face in sea salt every morning to gently remove the paste from the day before and apply a new layer, but it was always messy because of the ooze so I eventually decided to just add another layer as needed. Yesterday morning, for the first time, I noticed that the ooze was starting to subside! Could this announce the end of this neverending flare? I hope it will not be a regular thing though, but you never know with TSW.

Meanwhile, the rest of my body has been somewhat OK - well, OK compared to my face! My whole body was always dry and itchy and I was shedding dry skin everywhere. I was practically living in the bath (with sea salt and baking soda) since it is the only thing that could ease the itch and really relax me, but a week ago, for a good four days, out of nowhere, it happened - a body flare!

I was suddenly not even able to move without crying in pain. My skin was so tight, hot and burning, sore - as if I had been hit by a truck! - and with open and oozing cuts. I could not even tolerate the bath anymore since it burned so much, even with baking soda added to it, which is a neutralizer and prevents the water from stinging. I could not touch my dog, I would not even tolerate clothes since my skin was so raw! I "wore" cotton bed sheets for those four days. Stubbornly, every day, I tried bathing again - I could not imagine my only relief being taken away from me! One morning, surprise, the water did not sting anymore, but when I came out of the bath, I was not able to pat myself dry since the burning sensation was unbearable - I eventually fell asleep, all wet and exhausted from crying so much, wrapped in a bed sheet.

The day after, I fell significantly less sore and burning, and I noticed my open wounds were healing. I was also able to bathe and get out without any pain. That was such a relief, I wanted to jump everywhere! Some areas of my body were so tight after bathing though, I could barely move them - my neck, behind my knees... so I tried using zinc paste on them and it acted as a lubricant. Everything was going for the better! The following days, I was more and more comfortable and as I am typing this, I am surprised I have not even felt the urge to jump in the bath today!

I have also been sleeping fairly well the past three days - about 4 or 5 hours of almost uniterrupted sleep! Before, some nights, I would not even get a full hour! When I started TSW, I would not be hungry and I had to force myself to eat - these days, I am always extremely hungry, it's crazy! Those are major improvements, although I have to keep in mind it will get worse before getting better.

Wish me luck!