Side effects of topical steroids vs symptoms of red skin syndrome

I'd like to start off by saying I'm feeling alot better today. After I wrote my last post, thing went downhill even further... I had the most excruciating pain ALL day long. I was literally like a crackhead in withdrawal...my whole body was shaking violently, couldn't move, was freezing & burning up at the same damn time, and the pain was indescribable. The only pain I've experience that was worse than that day was labor. Seriously. And because my doctor said I could only take 1 vicodin a day, I waited all day long until I put the baby to sleep to take it. Once it finally kicked in the relief was amazing. OMG. Why didn't I just take 2 that day?!

Anyway, I'm angry that I'm going through this because of certain doctors negligence. I don't blame or distrust ALL doctors but I'm definitely more weary of them now. I had one dermatologist tell me that I could use this one particular topical steroid (class 1 - will discuss below) every day and be fine. I was always prescribed this stuff without being warned of their side effects. I'm angry that I'm still in pain from moisturizer withdrawal. (I think? Could just be coincidence and I was going to have the biggest flare yet but I doubt it.) And I'm angry I can't live a normal life. SO...I wanted to do a comparison of the side effects of topical steroids in comparison to the symptoms of Red Skin Syndrome (also known as Topical Steroid Withdrawal) to warn anyone that is currently using topical steroids, considering using them on themselves or their children, or are going withdrawal already. There are 7 classes of topical steroids with 7 being the weakest and 1 being the strongest and most potent. Class 7 is your over the counter hydrocortisone. For reference, I have used topical steroids from every single class and had been using Class 1 for YEARS. Thinner and more sensitive areas of the body like the face, armpits, or groin are supposed to be treated with mild topical steroids. Well I used my class 1 on my face sometimes which is probably why my face is so affected right now.

SOME of the possible side effects with long term use of TS (local and systemic):
1. Stinging and burning on application which is supposed to lessen over time
2. Thinning of the skin
3. Discoloration of skin (including redness, spider veins, bruising, and stretch marks)
4. Potential allergy development
5. Fluid collection in legs
6. High blood pressure
7. Bone damage
8. Cushing's Syndroms
9. Adrenal gland suppression
10. Enlarged blood vessels
11. Higher susceptibility to infection
12. Glaucoma

Symptoms of RSS (I have personally experienced 1-9 and have read about others who have experienced 10):
1. Uncontrollable, spreading, worsening eczema
2. Discoloration of skin - redness, specifically
3. Hot, burning skin
4. Oozing
5. Shedding, flaking skin
6. Raw, painful skin
7. Uncontrollable itching
8. Inability to regulate body temperature
9. Edema (swelling)
10. Cataracts

As you can see, some of the side effects of topical steroids are equivalent to the symptoms of Red Skin Syndrome. Hmm, imagine that!

Lastly, a photo of my flare 2 days ago. I look dryer now but pretty much the same.

TSW day 225 / MW day 17

I'm 7 months in and flaring hardcore right now. After the wedding, I basically slept for 2 weeks straight. I would sleep my broken 8 hours at night, then a 2-3 hour nap around dinner time like clockwork (I missed dinner with my family every night of those 2 weeks, nevermind I was supposed to be cooking it!), and then another nap around 9pm for another hour or so. Crazy amounts of sleep. But it felt so gooooood. Slowly it turned into one nap either before, during or after dinner time. That nap has stuck around for now. I obviously need it so Im not fighting it. During that sleepy time, my skin was bad but nothing compared to what it is right now. I have to remind myself that Im not even 3 weeks into moisturizer withdrawal and unlike many others who do moisturizer withdrawal, I seem to take a longer time to heal from it. It happened the first time and is obviously happening again. But now my period is coming and as usual with that comes intense flaring. This time around it's worse because I'm oozing and itching like crazy. Oozing so much that I literally have to peel my clothes off because they are sticking to my skin. Oozing so much that I have to peel my face off the pillow every time I turn over. My white pillowcase is yellow from ooze after just 1 night on it. I have to change my sheets today even though they were just changed yesterday. Ugh....it feels so disgusting to be so raw and have ooze literally dripping down my face into my mouth. And then not to be able to stop scratching the already raw skin. I thought my skin was on the up and up but that was clearly before the hormone change that accompanies my menstrual cycle. Actually, I know it was on the up and up because Hubby just told me that I had 2-3 days of good sleep, good energy, and good morale prior to this flare. It's always hard to differentiate between flare and non-flare because my skin never clears up in between. It's kinda of like...bad and worse. But anyway...it started 4 days ago. On my birthday. The pain that had slowly been decreasing returned with a vengeance. I cried at my birthday party. Twice. Because I was in so much pain and I just couldn't hold it in anymore. It's so weird but I never have severe pain in the mornings or early afternoon. It always starts late afternoon to evening time. It's mainly my neck that is in pain and when it feels like that, even the air hurts. Literally. Air is painful. So my current regime of meds is as follows. 1200mg of Gabapentin broken into 3 doses throughout the day (300 at wake up, 300 at dinner, 600 at bedtime). Haven't noticed any difference in upping the gaba but the pain management dr I'm seeing thinks it may help with the "burning pain". So far, it hasn't. 20mg of valium an hour or so before bed (though I usually take them as I'm getting in my PM bath) and 10mg of ambien when I'm ready for bed. Vicodin as needed at night though I've only managed to NOT take them 2 nights. And I just got an increase in the Vicodin bc it was barely taking any of the pain away. I explained to the doctor that if on a scale of 1-10 my pain was a 10 then the vicodin brought it down to 7-8. Not good enough. I do realize that at the end of all this, I may very well have a problem getting off all these meds. But I have weighed the risks and obviously decided it's worth it. I just need them to get through this time because I can't handle going through this without medicine. It's fucking awful. I can't even hold my son right now because it hurts too much. I don't let my husband touch me because it hurts. Our hugs consist of me resting my forehead on his chest because his touch feels like fire to my skin. I can't stop shaking either. I'm unable to regulate my body temperature again. One minute im burning up and the next im freezing. Or better yet, my top half will be on fire while my bottom half is freezing. My entire body is currently covered in "eczema". I even have it on my feet where I NEVER had eczema before, nor have I ever used topical steroids there. This withdrawal process is such a bitch. Worst areas in order of severity are my neck, face, forearms, hands, armpits, feet, behind knees and groin. Anyway, I don't feel like uploading pics. I don't feel like doing shit. That is all.

Month 7 - Moisturizer Withdrawal Again!!!

The day I wrote my last post, I had been waiting for feedback from Dr. Rapaport. I had sent him my pictures and explained that I was reacting towards the moisturizing (didn't include the fact that I ate gluten since he doesn't believe diet plays a part in this). Some of the side effects I experienced were some that I hadn't seen since the beginning of this process; red sleeves, intense burning on my neck, oozing, increased redness all over, and severely increased itching. I heard back from him the following day saying to cease all moisturizing, that my skin is just too sensitive for ANYTHING at all to be put on it. Arrrrghhhh!!!! I wish he had not advised me to moisturize in the first place. I told him I wasn't using anything because it worsened my symptoms. With all that said, if I hadn't moisturized, there's no way I would have been able to go to my friends' wedding. So in the end it was worth it. I'm just paying for it now. The past 3-4 days have been so incredibly painful, I don't even know how I've endured it. Actually, I do. I slept through most of it. I saw a pain management doctor the other day and he is upping my gabapentin (nerve pain meds) hoping that will help with the burning pain. I was already taking it on an as needed basis but he informed me it's the type of drug that needs to build up in the system. Whoops. I also got a script for Vicodin but I took one last night and I still had pain! Wtf?! I guess it just eliminates the most excruciating pain. I was hoping it would eliminate ALL the pain. Since I'm going through moisturizer withdrawal again, I'm experiencing lots of pain. Luckily, it's not as bad as last time (see my post labeled - Moisturizer Withdrawal day 15 under popular posts) but still really hard. On the plus side, I've already notice my skin start to heal quicker and toughen up a bit (it's able to handle more itching before breaking) and redness has decreased. I've been taking 2 baths a day, as recommended by Dr. Rapaport, and this time around, I'm liking it. When I did moisturizer withdrawal last time, I wouldn't bathe every day and my neck would get so stiff, my whole upper body would be sore from not being able to turn my neck. But this time around, Ive been able to gain mobility by more bathing. Also during MW last time, I'd have crazy thick, disgusting scab build up which lead to a constant picking/oozing/re-scabbing cycle. This time, my skin doesn't have the opportunity to build up the thick scabs because I keep my skin moisturized with bathing alone. I actually look forward to baths now. After getting through the first 5 minutes of intense stinging/burning, it starts to feel quite soothing. It's the only time I feel NOTHING. Ahhhh it's so good. I've also been using Domeboro 1-2x/day. Domeboro is an astringent that helps control the oozing. I use it on my upper lip area and anywhere else that I scratched the shit out of.

Anyway, enough complaining. Here are things I am grateful for:
1. MY HUSBAND!!! He has been so amazing during this whole process. I love him so much. He works so hard yet never gets frustrated with all the slack he's picked up when I'm basically an invalid (which is pretty much all the time lately), and is always there to hug me and comfort me when I need it. Even during my darkest hours, he can make me laugh. I would say we have a really good laugh at least once a day. Those of you going through TSW know how depressing it can be and sometimes it's hard to even smile so being able to laugh feels so good. It reminds me that there are good times ahead.
2. My husband. Lol. Seriously, he is the reason I am able to get through this.
3. My health. This is a funny one because obviously I am sick. I look in the mirror and I see a sick person. But I am not dying, I don't have cancer, my son is healthy, my husband is healthy, what more could I ask for? One day I will be done with this and I will be stronger for it.
4. ITSAN. I don't participate too often in the forum but I know it's there for me if I need it. What better place to get information than from other people going through the same thing?

Picture update:

These first 2 pictures are from a couple days ago after an itch attack. See the oozey part at the bottom of my neck? That's the part that has been killing me lately. It's weird how the places that hurt the most are barely visible.

The next 3 pictures are from today. Although it doesn't look much better, it FEELS better. No oozing! And that's all I care about right now!

PS- Today marks my 7 month anniversary since quitting steroids!!!