Saturday, May 3, 2014

I'm posting again so that must be bad. Cellcept in my future?

Yea, April was good while I was on minocycline. The right side of my face was giving me problems, and an overall dryness was bothersome. I went back to my old Derm last week and he was explaining the whole eczema thing and why I need moisturizers, and how I need to stop the antibiotics. So I said, what the heck, let's give it a try. Now I knew I was going to eventually have to get off antibiotics, but I didn't know how bad I was going to get, and how fast it would happen. The first half of the week was surprisingly good. The cereve moisturizer felt good, although the facial redness got worse (as expected). By day 9 I think My face is the worst it's been yet. Sores that I can't even explain are all around my mouth/chin (they don't look like herpes), just big sores that weep along with the rest of my face and neck. I'm itching and flaking (as usual). So now what? Just try and dry my face out again, hopefully it doesn't take as long as last time. I'll use some hibiclense tomorrow and that should help dry me out. But my face looks pretty beat up, and I have to be careful not to get it too dry or it will become counterproductive. Now I'm starting to think about going back to immunosuppressants, specifically cellcept, because it is by far the safest, even though it doesn't work the best, and it takes longer to star working. But I'm fine with that. I just want to be at a manageable level, and I'm certainly not there tonight. Ugh, gross.

Nighty night,
JT

Monday, March 24, 2014

Eczema, apple cider vinegar, and some tough realizations.

I cannot overcome this eczema/folliculitis combo with my skin!! Having one of these conditions is bad enough, but both of them is just ridiculous! The tsw symptoms are really crimping my lifestyle at the moment. My face is getting back to its bad levels it was prior to MW. Insane flaking, more redness, and the old sores are coming back. This is really disappointing. When I stopped using moisturizers my skin dried out and the sores healed up very quickly. The oozing stopped within 3 days! Someone on ITSAN recommended apple cider vinegar (acv) applied topically to help me with my bacteria problem with my skin. I don't want to use antibiotics forever to help with my eczema yet if I don't I just get really red, bumpy and itchy all over my body. So I started using acv, and you know what? It actually worked! I can tell within a day of using acv it helps my wrists, hands, arms, and legs look better. It stings, but it seems to work. However................ despite the initial acv success, the last few weeks my skin kept getting worse and worse. UGH!!!!! (I'm mentally screaming right now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!). Fine, I'll go back on some antibiotics (minocycline) to help get me under control while I've got some important stuff coming up. Well guess what my skin had to say about that? A big "screw you". Yea, the bumps got better (folliculitis), and the eczema is slowly getting better (it seems slower than before, and this is not good, i hope i'm not becoming resistant to this antibiotic), but i'm still really shitty and I don't know what to do. I just called in sick from work because I look like a skin graph patient on my face. Maybe the acv is ok for my body, but not on my face. For some reason my face just hates anything on it. Anything. Even before I started tsw the steroids quit working on my face. Maybe it wanted more potent ones. Maybe it has to due with me using hydrocortisone cream on my face for 25 years. Yea, maybe that has something to do with that. 21 months into TSW and nothing to show except that I realize that I'm f'd, and I don't know if I will ever be normal. I don't want to be perfect, I just want to be normal. I don't need perfect skin, just somewhat normal skin. That last doc said my eczema was the worst he's ever seen. I don't want to be that guy anymore. I've always been that guy and it has cost me a lot, even though I've been able to overcome it in some respects. I can't imagine how bad my life would be if I lived in another country where this kind of stuff would exclude you from the job market. I'm lucky and I'm unlucky. I've over it. Please end soon!

Tuesday, February 11, 2014

3 months MW, 19 months steroid free (mid Feb. 2014)

Not a whole lot to report at this time. Itchy? yes. Red? yes. Miserable? yes. However, at least I'm better than I was in early November. When I was on my vacation I looked horrid with a red, red face and sores that would not heal. Stopping the use of moisturizers really helped in that respect. Also I find that the skin on my entire body is dry, but it seems less bumpy, and less irritated now that I stopped moisturizing. I'm sure that it being winter is not helping the dryness either. I do have a humidifier in the shed. Maybe if I get some courage tonight I'll run outside through the snow to get it and try it out. Sometimes I sleep through the night, sometimes I don't (which is a whole lot better than never sleeping through the night!). Somedays I'm really itchy, and somedays i'm ok. I keep getting this reoccurring folliculitis which is super annoying. Minocycline helps with that. Other than that, just keep on trucking and hope things get better. This summer will be 2 years steroid free and I'm hoping I'll have something to celebrate. I know that some of the itching is mental. If I can stay busy throughout the day I certainly will itch less. But if I get stressed, or bored (which happens a lot), I definitely itch more. I probably need to start forcing myself to be more active and socialize more (without alcohol!). One more thing to add. My neck is still giving me problems due to dryness/flaking/itching. Taking minocycline immediately helps my skin. My hands look better, my neck clears up, my normal eczema trouble areas do better. This definitely shows there is a bacterial problem associated with my skin condition. And other than taking an antibiotic, I'm not sure what I can do to try and mitigate this problem. I change sheets 2-3 times a week. Totally dry off after shower prior to putting on clothes. Use hibiclens when needed. Wear loose fitting clothes. I don't know. Maybe the tsw is just making this worse. I'd be happy to hear any suggestions.

Here's a quick timeline of my Moisturizer Withdrawal:
0-3 days - oozing stopped
1st week- really bad skin, uncomfortably dry, not fun! However sores on face healing!
2nd week- really starting to see improvements. Sores healed, redness reduced, still really dry
1-2 months- uncomfortably dry, need to splash cold water on legs, face for pain
3 months- back in the game. feeling better, skin still dry but manageable. No sores on face, redness reduced.

Still waiting for a magic pill,
JT

Wednesday, November 27, 2013

Moisturizer withdrawal (2 weeks in)

2 weeks ago I was in a bad place. I had areas on my face that would not heal (for months). It was red, itchy, flaky, oozing, and I could not sleep. I decided to quit using moisturizers. Turns out, it was the best decision I've made so far. Within 3 days all the oozing completely stopped. The places that would not heal are healed! I am still red, itchy and flaking, but nothing like before. I'm not lying on the couch all day and I'm sleeping at night. I hope this progression continues, but you never know with tsw. The first week sucked. I looked horrible and felt worse. I had to keep splashing cold water on my face and legs to help with the dryness and pain. I was shedding like crazy. It was like stopping steroids all over again. But, it was totally worth it. to see such a big improvement in 2 weeks is a welcomed change, The challenge is in taking showers. The warm water really helps to sooth, yet it does dry out your skin. Some days I don't care and I just take a hot shower and deal with the dryness afterwards. Other days I can talk cooler showers and feel better throughout the day. Either way, it really helps just to stay busy. Don't look in the mirror. Don't itch that itch if you can help it, and just live your life. Oh yea, and keep your head up (literally). If people look at you funny, just look at them and smile, and say hello. Try not to feel bad for yourself. Feel bad for all those poor people that have to look at you. Seriously, that must suck to be them and have to look my face. I feel sorry for them.

Friday, November 1, 2013

Skin addicted to lotion

So I'm 16 months into tsw and I'm.... managing, I guess. It's 7am and i haven't got to sleep yet so I thought id post something. I keep reading other peoples posts about their skin being addicted to moisturizers as well as steroids and it got me thinking. My skin has never liked moisturizers, never. I've always gotten into trouble when I tried to use them. However during the steroid withdrawal, it's been essential for me to use something on my face, because it gets ridiculously dry and flakey. I alternate between aveeno baby eczema and an ointment that's around 40% petroleum jelly. However, I can put lotion on, just out of the shower, and be flaking not 5 min later, and also be itching my face. Then I have to re wet my face and re apply the moisturizer, which always makes my face more red. I guess the flaking is somewhat related to using hot water. However using luke warm water just really isn't usually an option because it stings so bad when I get into the shower. The hot water is much more soothing and burns less. However, I can turn the temp down prior to getting out and try and cool off. This doesn't necessarily mean I'm not going to peal like crazy when I get out, but sometimes I do, and sometimes I don't (noting that hot showers are worse). So I thought, hey, maybe I should try the no moisturizer approach and maybe it will speed up my healing. I was at a point where I was pretty bad and decided, what the heck. If it's going to be this bad, I might as well go "all in". Well, I'm 2 days into it and it sucks. My face is just gross to look at. All around my mouth, chin and neck I've got the ooze going on and it's pretty depressing. I finally decided to take some time off work and I'm hoping I can stay with this program and hopefully it will speed the healing process. Interestingly enough, when I was on cyclo, I didn't need any moisturizers at all, and I felt great. That's where I want to get back to. It's like when you start using chap lip, it seems like you just got to keep putting more and more of that stuff on because your lips keep getting dryer and dryer. My derm says I have to moisturize several times a day! I asked him, "do you moisturize?", and he said "no, but I don't have eczema". Eczema or not, there's something not quite right about having to put on moisturizer every day of your life. We weren't born needing moisturizers, people lived for thousands of years without them. I just don't think it's natural (and I'm NOT one of those naturalists!), I'm just saying I don't think it's necessary, and it's probably counter productive to our bodies natural responses anyways. If my skin is dry, my body should fix the problem on its own. Me putting moisturizers on is interfering with the process. (That's my Non-medical opinion anyway). We'll see how it goes. Keep your fingers crossed for me, I'll be laying on the couch in misery for a while now.

Wednesday, October 9, 2013

16 months steroid free, 2 months off cyclo

Well, it's been a while since my last post. I guess i've been superstitious about posting. I have been doing fairly ok after my cyclo taper dose ended 2 months ago and didn't want to write about the subject, I was just hoping that I didn't get any worse. Well, I've gotten worse. They say first in, last out with steroid usage, and I hope it's true. I used steroid creams on my face for over 20 years, and my face is now the worst part of my symptoms. I still have slight rashes on my torso, and hands, but my face just sucks right now. I am red, flaking, and oozing almost 24/7. For some reason the oozing is keeping me up at night a lot. I toss and turn all night, then I wake up exhausted. I take 1-2 showers a day, and usually feel better for a few hours after the shower. I'm using advanced healing ointment which is 41% petrolatum. It's not as thick as regular petroleum jelly, and I can tolerate more on my face. I've also been using aveeno eczema relief on my face to help. Coconut oil on my body. Not sure why, but folliculitis seems to be another symptom of tsw for me if I decide to drink alcohol. It just makes the tsw and itching worse. Minocycline periodically has done a real good job of helping me with that.  I haven't been reading other people's tsw blogs in a while, but I probably will soon, just to see how long this oozing thing is supposed to last. I've been dealing with some pretty bad skin problems since 2009 (off and on depending on the immunosuppressant I was on), and I'm just tired. Im in my early 30's and am starting to get some white hairs. I may decide to take off work soon even though I don't want to. Ugh.

Monday, June 10, 2013

Taper Dose, Folliculitis, and Sateen Sheets

So I went off Cyclosporine for a about a month and my skin got so bad I decided to get back on it. I'll post a picture when I get a chance, but basically my entire body was covered in open cuts from scratching. I was not sleeping and had all I had all the other typical TSW symptoms. It was definitely a low point for me. Now I'm on a taper dose of cyclo and I expect to stay on it for about 2 months (until around the end of July). At that point I will go off cyclo for good. I am prepared to take some time off work because every time I get off it I get really bad. I decided to stay on the taper dose because I can still function while on it, and I have a lot of important stuff that I need to do during June and July. It's also better for me to push back taking time off work as long as I can. I'm still Itchy, Red, and Miserable on the taper dose, but at least it's manageable.

During my low point I noticed that I kept getting more and more pimple like bumps all over my body (chest, belly, back, arms, legs, butt, head) and I could not get rid of them using shampoos and cleansers (silicic acid, selenium sulfide, benzoyl peroxide, hibiclense). I finally realized it was folliculitis and went to my Dr. and got an oral antibiotic Rx which helped calm that down.

I had a miserable experience with sateen sheets that I though might be helpful for others to know... I bought these fancy calvin klein sheets not knowing they were sateen. They felt really good, but when I slept on them I would wake up in a pool of sweat! Yuck! I figured that it was just me and my tsw, and it couldn't be my nice new soft sheets, but when my wife finally got home a few days later, she had the same reaction. We did a google search and realized that a lot of people have this same reaction when sleeping in sateen sheets! Who'd a thought? I pretty much NEED to have just plain old cotton clothes and sheets or else my body freaks out.

Well, that's it for now. Next month will be a year without steroids and it sucks that I'm still just as bad as day 1 of withdrawal. Hopefully things will get better for me and I'll keep you posted as things progress.