I am going to be honest with you, the first few months of topical steroid withdrawal are rough – really rough. No matter how prepared you think you are it just beats the hell out of you. You don’t know what to expect day-to-day. I was constantly asking questions to the itsan.org support groups. They probably wanted to block me so I would stop asking the same stupid questions, but they patiently answered me and were my lifeline. I don’t know what I would have done without them.
The side effects come at you fast and unexpectedly.
EXTREME COLD – On day 5 my daughter went to her ice skating lesson. She normally skates for hours after her lesson is done. She wanted to leave right away because she was cold. Her fingers felt like ice even with heavy mittens on. They did not warm up for hours. She was wrapped in a heavy blanket and just could not warm up. I didn’t realize this had anything to do with tsw at first. Well, she didn’t warm up for months. She was under a heavy blanket from February until June. She went to school with an undershirt, thermal underwear, a long sleeve shirt, heavy sweat pants or jeans and a heavy hooded sweatshirt. The hood stayed up all day and she was still cold. This is actually her under the blanket.
RED SKIN – On the 10th day her skin started to get red. It got much brighter as time went on but it began on the 10th day off the steroids. Her whole face was red except for her cute little nose which was extremely pale. Her skin was also warm to the touch. As she got redder it looked like she was on fire.
SWELLING – On day 10 her face also swelled up. She was fortunate because I have seen some severe swelling. Hers wasn’t that bad. The bridge of her nose seemed to be wider and her eyes and cheeks were swollen. Her feet and ankles were also a little swollen. This only lasted for a week for her but the poor kid was so sad because she thought she looked terrible. Little did she know that things would get worse. We used cold wash cloths and those cold facial masks.
EXTREME EXHAUSTION – Somewhere in the 2nd week exhaustion hit. I am not talking about laying around and feeling tired. She could easily sleep 15 – 20 hours in a day and wake up tired. She slept for 10 hours, got up ate something and went right back to sleep. This scared me more than anything else because my daughter is a ball of energy. She is always on the move and she just couldn’t do anything. She went from the bed to the couch and back to the bed. She was going to school but as soon as she would come home she would do her homework and fall asleep until the following morning. In the morning, she would sleep while I got her lubed up and dressed. She even slept through me doing her hair. She has a big head of curly hair, so that is really impressive! She was such a trooper – she did not want to leave school so we let her go and kept her home on the days that she literally couldn’t keep her eyes open – and there were a lot of those!
DRY AS THE DESERT SKIN – Day 17 her skin started to flake. This was not your normal flaking. There were huge pieces of skin flaking off of her. Her entire body was dry (except for the oozy patches, which I will get to) and the skin flakes were everywhere. Her face looked like it had a crackle finish every morning. She would wake up laying in what looked like sand. I have always been one to vacuum a few times a week but I was using it several times a day in her room and in the living room around the couch. We used cold pressed extra virgin organic coconut oil and extra virgin organic olive oil on her skin but it just soaked right in. Even vaseline wouldn’t keep the skin moist.
OOZING – Day 17 she also started to ooze in a few places but she did not have severe oozing like so many others. Her neck started out oozing pretty bad but it didn’t last that long. Domeboro is what we used and it seemed to help. It is one of those things that just has to run it’s course.
ODOR – You will notice an odor that sticks to the clothes and sheets even after you wash them. It gets better over time but at the beginning it is horrific and shocking. I now wash all her clothes with vinegar first. Then I rewash them with free and clear detergent and a cup of baking soda. That seems to help but I learned that too late and the odor is really set in some of the clothes from the beginning. We plan on ditching everything once this is over.
SEVERE ITCH – I am not sure when this started but it is unreal. She could not stop scratching for a second once it kicked it. Ice seems to help a little and antihistamines (if you choose to use them). Nothing can really get rid of the itch, which completely sucks! If you do use antihistamines I highly recommend alternating. So far that has really seemed to work for us. We use Benadryl one day, Zyrtec the next and Hydroxyzine the day after that.
CRACKED SKIN – There were (and still are) areas of her skin that cracked open. It looks horrific, just absolutely awful. You just can’t be prepared for this. It looks as though the skin is too tight and is tearing open. It is horrible to see. We used coconut oil, olive oil and vaseline.
PUSTULES My daughter started getting bumps all over her body after about a month and a half of being off all topical steroids. We used coconut oil on them and they seemed to go away after 2 or 3 days. Then a couple more would show up – some small, some large. They never seem to hang around very long but some can be painful. It isn’t easy to see with all the flaking, but you can see a side view of one on the right and 2 other smaller ones in the middle of the picture.
SWOLLEN LYMPH NODES The swollen lymph nodes started when my daughter went through tsw the first time and got worse when we started round 2. Her lymph nodes in the groin area got extremely large. They never seemed to bother her though. This looks scary but from what I understand it means that your body is working properly to get rid of infection. None of her doctors seemed to be concerned about it. They said when her skin clears the swelling will slowly go down.
HAIR LOSS After about 2 1/2 months my daughters eyebrows started to thin. By the 4th month they were completely gone. I think her hair thinned also but she had such a thick head of hair that I couldn’t really be sure. This is a really disturbing look and it made her so upset. She was rarely looking in the mirror but once the eyebrows fell out she started avoiding the mirrors at all costs.
So, that is it. I am sure I forgot something, or many things but considering the little sleep I get I am lucky I remember to put pants on in the morning.