Monday, November 12, 2012

Doing Great! But probably not for long.

So in mid Sept. I went on cyclosporine and ever since then I have totally got my normal life back.  I can drink coffee and alcohol, i can exercise, and my skin has been close to perfect. However I know that the redness is just waiting to come through if I stop cyclo. I don't know if this med just prolongs my tsw but I hope my skin is getting used to not having steroids and that it will help me deal with the side effects of tsw when I do get off cyclo. So while i've been totally enjoying this part of the withdrawal, I know that a storm is a brewing ahead. I'll update this blog as major changes happen.

Wednesday, September 5, 2012

Really bad day

Today started off ok, then I decided to play tennis in the heat... Worst decision of my week. I got home without itching then took a cold shower and put vasoline on once I got out. My body would not cool down and it started freaking out and it felt like a crazy rash was growing on the rest of the parts of my body that were previously rash free. I had insane itching, then I hoped back into the shower with horrible stinging due to my scratching. Now I'll spend weeks recovering from the deep scratch marks. I'm at 2 months steroid free and after today's horrible experience I feel like I'm probably going to keep getting wore. I can handle the rash on my legs and arms, and it sucks to have it on my torso, but I can still manage it. But now that it's moving to my neck I fear it will be on my face shortly. Having the rash on my neck really sucks. I am unable to sleep at night. Last night I finally got a nap at 8am, and I even took Benadryl and ambien at 10pm. Wtf? I can handle this for a few nights, but at some point I'm going to break down and have to take off work for a while. Tonight's itching has really put me in a sad mood. Luckily my wife was home tonight and helped me through it and then ordered Chinese take out. My skin hurts so bad I don't want to leave bed. 

On another note, I've been trying to take less showers because of how bad they are for my skin. So far I still need to take 2 a day to help lower itching. This doesn't help my skin. But is morning I tried putting a hand towel on the shower head so the water wouldn't hit my skin so hard. This worked great. The water gently rolls over my skin, and I can tolerate a little cooler shower (both positive). I got out of the shower and my skin was less irritated, success! I will definitely try this method again.

I hope I feel better tomorrow :(

Sunday, August 26, 2012

New Anti-Inflammation Tactics

So today started off awesome and ended horribly. I didn't even need to take a shower this morning (my skin was very happy about that) and I spent the day with friends at the shooting range and then lunch. The weather was good so I decided to play a tennis match this evening. I definitely regret that. Even though I though my skin was ok, after I started to sweat in the humidity I could feel my skin burning. When the match was over and I was in my car, I went on an itching rampage which continued into the shower after I got home. I'm really bummed about that. I didn't tear up my face (which was nice) but I itched all over my body. I had a rash start on the back of my neck a few weeks ago, and it has spread to my upper arms, and torso. Not fun. Oh well, at least half my day was awesome.

I started an "anti inflammation" diet last week along with "anti inflammation" supplements (purchased at Earth Fare). I appears that this combination is helping with facial redness and blemishes (yea!!!!!). Plus I noticed an increase in energy from eating healthy. Basically the diet (like a lot of other ones) has you increase veggies and cut back on sugar and processed foods, as well as red meat. There are multiple websites you can find on it if you do a google search.

Thursday, August 16, 2012

6 weeks into TSW

So I've been steroid free for 6 weeks, and overall I would have to summarize this experience by saying that......  "it's complicated". So what I've done for myself is make a google spreadsheet that I update daily. I've made a bunch of categories like "sleep", "medication", "moisturizer", "showers" etc. The most important categories are the first 5: Itching, Redness, Flaking, Lesions (body), Lesions (head). All of these categories I will rate as low, medium, or high depending on how I am doing for the day. This spreadsheet is going to tell me how long my flares are, my overall irritation level, how long my good days typically last, and if I'm improving overall. I think this spreadsheet will prove to be pretty useful, and with google docs it's easy for me to access while on the road (which is important for me because I travel a lot). I think I'll typically update this blog every couple of weeks and for any major breakthroughs.

Out of the past 6 weeks I've only had 7 days of good skin which started about 2 weeks into steroid withdrawal. Amazingly enough, during those days I also quit all moisturizers, and only took 1 shower a day!!!!!!!!!!! (the more showers I take, the worse my skin gets). It was an amazing week, I was even able to drink alcohol without going into an itch fest! After that week my skin turned flaky and itchy, and I needed to start using my aveeno baby eczema relief cream on my face, with coconut oil on my body again. Since then, it just kept getting worse. The last 12 days I would classify as a bad flare (rash) mostly on my upper body, my head, neck, and ears with a medium level of irritation on my face. I was oozing, flaking, itching, and waking myself up (an hour after falling asleep) to crazy itching. One night I took a shower at 3 am after a real bad itch. Yikes, not good. Last night I was lucky enough to sleep mostly through the night and not itch. I used an icepack on the back of my neck for about 20 min. before I fell asleep. I'm not sure if that helped, but I'll try it again tonight.

I did visit my new dermatologist last month. I explained the situation with my long term hydrocortisone use on my face and I could tell she was a little shocked. I actually made a one page medical summary  of  my history, and prescriptions (over the past 4 years) and gave it to her right off the bat. I did this because it is much more effective than giving them 50 pages of medical history that their never going to read. She definitely realized that I wasn't the typical patient and after she realized that I was not going to accept any more steroids, we had a discussion on my alternatives. First I wanted to rule out that the flaking was not fungus related (which she didn't think it was), and now I agree. Secondly I wanted to know what was available to try and reduce itching and she went through the typical antihistamines. I also just needed a dermatologist in general, and I think I got a good one (which is, one that is willing to listen to me!). If things were to get really bad, I could go down the immunosuppressant route. Fortunately, I don't need that at this point. My tsw is bad, but at least it's tolerable.

On a side note, my wife and I got to go on a quick 4 day trip out to Park City, Utah last week which was a nice break from all the humidity here in NC. We hiked and mountain biked up in the mountains which was a lot of fun!

Wednesday, July 4, 2012

Day 1 (Intro)

If you think your skin problems might be related to long term topical steroid use, read below. Let me direct you to a website that may help you answer some questions about your skin problems:

Well, here is my story:

I'm a 32 y/o white male and I've had eczema since I was a child. I've used hydrocortisone creams on my body and face since I was young (probably 10 y/o). I've also been prescribed many different steroids to help with my skin problems throughout my life, and I've probably had 4 or cortisone shots in the last couple years. When I tried to stop using cortisone cream on my face in 2009 I was in for a real shocker. My face turned red while I was on antibiotics for a skin rash, so I decided while I looked so bad anyways, I'd stop using the cream on my face. I was off the cream for about 2 years and I was VERY ITCHY and VERY RED. After 2 years of little to no steroid use on my face I decided to give up and get back on locoid (a nice feeling, but stronger steroid cream) because I couldn't bare it anymore, and I thought my skin would go back to normal. After using the cream again for a little while the itching and redness persisted and my condition did not improve, so I said enough is enough, I was not going to use any steroids anymore, period. Since then the redness, itching, and flaking has been persistent and some days are better than others. This condition has definitely affected my life in a negative way. I'd say that I'm somewhat anxious and my social status sucks.

After visiting the above website, I've decided to quit all steroid creams. So as of today (July 4th 2012), I am steroid free. I am excited to see my new dermatologist next week and get her opinion. I'll post an update after my appointment.

Things that have helped me:
-shaving daily
-ice packs when needed and before bed
-Aveeno baby Eczema therapy cream (this is the only moisturizer that my face can tolerate, although I just read another article where people were stopping using any moisturizers which I may try):
-avoid coffee :(
-avoid caffeine :(
-avoid alcohol :(
-basically avoid flare up triggers
-try to only take 1 shower a day (skipping a day is hard for me, but my skin always does better if I do)
-the candida diet helped me reduce inflammation and itching , but I could only keep it up for 2 weeks because it was so strict, now I just try and avoid foods that spike blood sugar levels (sugars, bad carbs, etc.).

I'll keep you posted!