December 12 - Hands

December 8 – Slow Improvement!

Entering month 6 and slowly recovering from a flare that hit about a month ago. Mostly good news this time, so we’ll get the bad stuff over first.

The BAD:

- My hands are bad, and are the worst part of my body. Cracked, dry, and itchy. My palms are extremely sensitive and will act up if I do anything with my hands. The flare caused the skin flaking everywhere to return. Not as bad as before, but I find a trail of skin flakes wherever I go.

- I do not feel up to travelling. I will be missing a Christmas family reunion that will very likely be my Mom’s last Christmas. I never made it to Lubbock this season to watch my daughter march.

- I read about this and was expecting it sooner: I am losing my hair. It has thinned considerably and what was just thinned before is nearly bald. I hope the hair returns, but at my age I am not expecting it.

The GOOD:

- In general, I am better in all regards. Primary issue remains the itching everywhere. The hot/cold/sweat thing is better, and the electrical/nerve twitches are essentially gone. I am not taking baths all the time, in fact it has been several days since I took one (thanks to a bathtub leak that encouraged me to skip it). When I get home from work I take a very long hot shower.

- I did make it to Cowboy Stadium mid-November to see my daughter march during the TT vs. Baylor game!

- I am hoping to fly to Seattle to see my mom and rest of the family in January.

- I am off Ambien! I have been taking it for several months and after reading some horror stories about getting off of it, I decided to try stopping. For a few days I took half of a pill, then went to nothing last weekend, and I still slept! This is a biggie. I am still back to sleeping on the lounge chair and the next step is to see how it goes actually sleeping with my wife.

- I continue to rely perhaps too much on hydroxyzine, but it seems to be my best option for controlling the itching and has fewer side effects than ibuprofen. I hardly take any ibuprofen now, and the buzz in my head and ringing in my ears has improved.

November 19 - More of the Same

I have tried to update my blog a couple times lately, but I find I am writing the exact same thing I did before. Right now I am not making progress. The following is from a post I made on the ITSAN forum in response to the use of hydroxyzine:

My itching is relentless and is only manageable with a hydroxyzine every few hours. What really gets me upset is my lack of self-control when I start a bout of itching. I know damn well that if I start to scratch anywhere I will go into a spiral that can only be brought back under control by talking a long bath (and more hydroxyzine). My body seems to have different types of itching. My arms and legs and torso are the type of itch that when I scratch it is nearly orgasmic. When I start scratching it feels amazing, but the crazy itch spreads like waves to everywhere else. Once I manage to stop, usually in a fit of rage and disappointment in my lack of self-control, my skin has become very wet, irritated, and red. The itching on my stomach/chest is different and has an electrical/nerve feel to it, and if I scratch it, will not spread. My neck and back are different yet with a normal response to scratching, that is it feels good and does not cause an out-of-control spiral. My hands and fingers itch too, and I will sometimes without really thinking about grab a finger and basically squeeze and twist it. It feels amazing, but the next day the skin will be all torn up.

The fact that I do not use moisturizer on my back and face and they are my least affected areas has me thinking about the moisturizer withdrawal thing, but that is another subject. I need to try something else though, as I feel like my progress is in a hopeless holding pattern.

November 3 - A Relapse?

Well, I have been steadily improving until a few days ago, but I am going through what I am hoping is my first and last relapse. It's not that bad, I think it has set me back about a month, but work is again difficult and the hopes of making it to a Texas Tech home game is not looking good. The itching... OMG the itching... I think only fellow TSW warriors know what it is like. It is impossible for me to resist and sometimes find myself doing it my sleep. This time it is my legs and forearms and the result from scratching is a return of the irritation and redness. A few weeks ago I was so happy to return to my real bed, sleeping with a real wife, but last night I was back on the downstairs couch watching The Science Channel. Sigh.

I was taking a lot of ibuprofen to control itching, but when I told my GP that he told me to stop and had my blood tested. So, I tried hydroxyzine to control the itching and it was really helping. It is not effective anymore for more than an hour or two, and the doc has said I cannot take more than one 25 mg pill every four hours. Since my blood tests were normal, hopefully a combination of hydroxyzine and ibuprofen combined will help control the itching without OD'ing on either. As I type this, however, I have taken both and I am a mess.

One drug that works and has continued to do so is Ambien (zolpidem) for sleep. I can personally attest that it's reputation for sleep-walking is well deserved, but that seems to have calmed down. From what I understand, it's not really sleep-walking, but rather its amnesia. For example, when my wife's sister came to visit, she arrived after I had taken an Ambien and gone to bed. Apparently I came down to greet her, made myself some hot chocolate, then went to bed and I don't remember any of it. My wife tells me though that I was acting perfectly normal.

I am trying to maintain a positive attitude. Knowing that relapses are certain, having one is a milestone and simply a pothole on the road to recovery.

October 9 - 3 Months Off Topical Steroids!

THE GOOD:

- Three months have passed since I last used topical steroids!  One month closer to being cured!

- My skin continues to improve, as does my body's ability to regulate temperature.

- I have managed to productively work full time this week.

THE BAD:

- The itching remains out of control.  It's a tremendous psychological battle that I cannot conquer.  When the itching starts, I know that if I succumb and scratch that it will become much worse very quickly.  Yet I scratch anyway. This really pisses me off... I am simply incapable of not starting this insidious cycle.  Once I start, the intense itching races around and as I chase it my body starts sweating, everywhere.  The only way to calm it down is to hop in the bathtub.  I don't know why this works, but immersing myself in not-quite-hot water normally stops the itching.  If I am at work, however, a bath is not an option.  I will pop 3 or 4 ibuprofen and hope they will kick in before I go insane.  I try distraction techniques, such as walking around, making a phone call, or like I am doing now, write a blog entry.   If the itch is localized, the Allegra cream helps too.

- Although my rash is better, little skin-tag-bump-pimple-things are popping up everywhere, especially on my neck.  There’s, like, hundreds of them.  I really hope that these will go away.

- The edema in my feet comes back at the end of the day, although nowhere near as bad as it was.

- I have been getting a strange feeling inside my head, a sort of anxiousness, that  is hard to describe.  My head feels like there's some kind of electrical storm going on inside, almost like my brain itches,  It feels good to rub my forehead and area around my eyes and ears, but that doesn't make the feeling go away.  I wonder if it is from taking too much ibuprofen?

September 28, Week 12 - Back to Work

I went back to work last week, and it went about as well as I suspected.  I drive a computer mouse for a living, and was able to put my feet up while doing so, and happily my edema in my feet has not returned.  My problem is that I am in about a 5 hour cycle where itching will return in force and the only way to calm it down it to take a bath.  Sure enough, about at lunch time my body would go crazy and I'd have to hightail it home for a bath.  So, I was able to get in less than half my usual hours.  I am a bit encouraged that I was able to even do that, and am really hopeful that the itching will ease a bit before Monday.

My skin, feeling hot/cold, foot pain, and nerve tingling continue to slowly improve and my primary challenge is the insane itching.  It is simply not getting any better and sometimes is almost unbearable. 

I am really happy that the rash that started to appear on my face did not materialize!

September 26, 2013 - 4 Hours Per Day...

in the bathtub.

September 22, 2013 - Back to Work?

Well, I have been off work for 5 weeks now.  I am at a strange position with my doctors in that I am not going to take their advice anymore.  I refuse to take steroids.  I can't really ask my doctors to extend my medical leave if I am not doing what I am being told, can I?  So, I have decided to go back to work and see how it goes.  

Since last post, the good:

- My skin is better on my legs and neck.  My neck was thick and leathery and is much more normal.  My eczema on arms and legs is not nearly as red and angry as it was.

- Temperature control is better.  I am no longer freezing and sweating and the same time.  Hot and cold at the same time, yes, but not to the point where I huddle inside a quilt while sweating with heat pouring out of my clothing.

The bad:

- The itching has not let up, and in some areas is worse.  My chest and stomach are a powder keg.  If I even brush my hand across that area there will be an urge to itch that is almost beyond comprehension.  If I give in to the urge, the itching explodes and travels around my entire body as I chase it.  The only way to suppress this is to take a warm bath.  My wife found "Allegra Intensive Relief Topical Analgesic/Skin Protectant" and it usually works, sometimes really well.  If I can catch that urge to itch at its very beginning with this cream, I can delay the cycle.

- The edema and pain in my feet returns if I do anything for more than an hour or so.

- It is starting to affect my face.  My eyes have been swollen for a while now, but now my whole face is starting to itch and get rashy.  I really hope this doesn't get worse.  The only reason I have felt my case has been better than most other steroid withdrawal folks is that it hasn't been on my face.

- Emotionally I am struggling.  I've never dealt with depression before, but this may be it.  I dread every day.  I am wishing time away.  I haven't slept in my bed with my wife for about 2 months.  I can hardly stand it that I am not attending Texas Tech games to see my daughter march.  My stepdaughter's wedding is in 5 weeks,  what am I going to be like?  This nightmare could take months, if not years. 

- I still can't sleep unless I take Ambien, and that stuff is kind of scary.  I was reluctant to try it based on reports of people sleep walking or worse.  It has some of that effect on me in that I will catch myself talking out loud to myself before I nod off, or I will have lucid dreams wherein I am supposed to be scratching myself for some bizarre reason.  One morning I woke up on the floor scratching myself raw while having some bizarre dream where the itching was part of a process to activate some kind of sic-fi body mesh matrix thing.  Weird.

- I really don't know how I can go to work.  Not only can I barely function, I am in a cycle right now that lasts 4 or 5 hours:  The urge to itch will become unbearable, so I will take yet another bath.  This gives me relief, but only for a few hours.  How am I supposed to handle that at work?  

September 17, 2013 - A Setback

Today was a follow-up appointment at UT Southwestern with Dr. Vasquez, a resident dermatologist  and Dr. Yancey, the Department Chair.  I was rather excited about this appointment because I have been improving and I was expecting to be cleared to return to work next Monday.

It figures that for some reason (nerves perhaps?) I had a little flare this morning.  My skin looked angrier that it has in some time.  My body was having trouble again controlling temperature and my legs were a bit swollen.  Great.  I looked better than I did a week ago but I forgot that the last time I saw the doctors was 2 weeks ago.

I explained all this to the doctors but it didn't matter.  They saw me as not improving.  Here's the bottom line from the doctors:

1.  My next appointment should be made for 3 MONTHS FROM NOW.
2.  In the meantime, if I improve, call and come in earlier.
3.  If worse, I am to go to an emergency room.
4.  My skin is too severe to receive UV-B light therapy (my insurance has rejected it anyway).
5.  If I have not improved in 3 months, they will PUT ME BACK ON GOD-DAMNED STEROIDS.  

I refuse to go back on steroids and I became upset.  Bless her heart, my wife got upset too.  Things became a bit uncomfortable.  Dr. Yancey headed out the door and Dr. Vasquez told me that she needed to get to her next appointment.

I asked about my medical leave.  I cannot go back to work until I get a doctors approval.  She told me that she would consult with Dr. Yancey and call me before the end of the week.

We left very frustrated and I have that same feeling of rejection I had from my last dermatologist.  I really don't know what to do next.

In the meantime I have gotten an ear infection, so right after the appointment at UT Southwestern I called my GP, Dr. Harder.  He saw me right away and put me on non-steroidal anti-biotic drops.  We had a good talk about my experience today.  One thing I really like about Dr. Harder is that he doesn't fake it.  Most doctors will never admit ignorance.  I told Dr. Harder I am seriously considering traveling to California to see Dr. Rapaport and asked if he would be willing to work with him.  His answer was yes and that Dr. Rapaport would have to tell him what to do because this was "way over my head".  I realized just now typing this that this is the first doctor I have ever seen with such humility. 

September 15, 2013 - Grumpy Old Man

I am about to start my 5th week of medical leave and 11th week off steroids.  Last weekend was a low point for me because I was scheduled to drive to Lubbock to watch the Texas Tech vs. TCU game.  I have two daughters that go to Texas Tech and one marches in the Goin' Band from Raiderland.   Going to the games with my wife and visiting our daughters is one of my very favorite things to do.  It was seriously depressing missing the game, but I was glad it was televised on ESPN and Texas Tech is now 3-0.  I found a good video of the halftime show (remember when they actually showed the halftime show on TV?) on YouTube, and the marching band was awesome!

The edema in my legs is nearly gone, but I am keeping my feet up almost continuously.  I spend essentially the entire day either in a recliner with my feet up, sleeping on the couch, or in the tub.  I take 3 to 4 baths a day.  Usually, the bath will calm down the itching for a few hours.

I will occasionally attempt to actually do something, such as work on the pool, but the pain in my feet will quickly return.  Also, it has been pretty hot outside and I am still really struggling with temperature control.  If I get over-heated I'll get into the itch/scratch hot/cold cycle and head again to the bath.  I've gone to Lowe's a couple times for pool supplies and a new issue has arisen:  being self-conscious.  Up until a week or so ago, my symptoms could be covered up more or less by wearing long pants and a long sleeved shirt.  Looks a little weird in 100 degree heat, but nobody seems to care.  Now, my hands and eyes have become affected.  Here's a couple photos:

I have a doc appointment this Tuesday.  I'm not sure what to expect, as I am not better.  It will be interesting to see if they pressure me to use steroids again.  I won't do it.  

September 11, 2013 - My Eyes

One thing I have been thankful for is that my face has been relatively unaffected.  Well, so much for that.  I have got poofy eyes.  It may just be due to continued use of ibuprofen to help the itching, I'll have to wait and see.  They do not itch.  In the meantime, the hot/cold issue has worsened.  In discussing that part of this with my wife, it seems I am experiencing the exact same hot flash symptoms of menopause.

Sept 9, 2013 - It Heads North

After 3 weeks of doc ordered bed rest, edema is much much better and rash on legs is better.  It only looks bad if I scratch it, which I swear I won't do every night then wake up finding myself scratching.  Even using the scalp massager damages the skin on my feet.

Bad news is that the rash and insane itching has moved up and out.  The back of my hands are now inflamed and cracking.  My stomach, chest, and underarms are going through the shiny plasticy thing.  The itching there continues to be indescribable and I succumb to it, much to my dismay.  The itching is so bad that I will break down.

I am taking at least 3 baths per day, but I find they are not helping as much as they were.  If the water is too warm it will trigger the insane itching on my chest.

The doc wants we off my feet for at least 30 days.  I am so fortunate that I have the ability at my job to take time off.  I feel awkward about it, because I feel I should be in working, but the doc knows best I guess.  She is concerned that if I go off bedrest the edema will return.  I have made a couple attempts to do something physical, such as going to visit my new grandson, and my feet start to hurt almost immediately.

I just got out of a bath, and my pulse is 113.  I do not sleep at all at night any more.  The last few days I'll sleep from about 7:00 to 11:00, then nap during the day.

There is no moisturizer on here... this is dry skin.  

Edema is nearly gone.  Yay!

It's creeping up the back of my hand.  Crispy.

Sept 4, 2013 - How Long Will it Take?

Okay, I'm caught up with the blog so post dates should match content.  I went to UT Southwestern yesterday for a follow-up.  The docs were pretty pleased with the progress of my edema and skin barrier, but are afraid that if I return to work it will immediately worsen.  They want me to stay home, but are going to consult with each other and and let me know.  I have not heard back yet.  I think I caught them a bit off guard...  the docs are so convinced that the only solution to anything related to skin conditions is to use steroids that they expected me to be worse.  The fact that I have improved without any use of steroids whatsoever is a bit hard for them to accept.  And it gives me hope.

My days are falling into a bit of a routine.  Around late evening, about the time I should be going to bed, the insidious itching begins.  There is no way I can get any sleep in this condition.  It doesn't seem to matter at all what I take to supposedly help the itching, nothing works except a bath.  I have tried virtually every pain reliever and anti-histamine, but nothing does anything.  So, after a yet another bath I snuggle up on the couch and promise to myself I will not scratch.  It doesn't work.  The level of itching I swear is beyond any humans ability to resist.  I have bought a baby scalp massager after reading a recommendation form another TSW sufferers blog, and it helps a lot in that I can use it to scratch but it minimizes the damage to my skin.

I watch TV until bout 5:00 a.m.  My favorite is The Science Channel, History Channel, Velocity HD, etc.  How It's Made, Through the Wormhole, The Universe, Myth Busters, Survivorman, American Pickers, Pawn Stars, etc.  Ask me anything about astronomy and I can probably tell you.  I love Morgan Freeman's voice.  The vastness of the universe fascinates me.  Everything sold "As seen on TV" is total crap.

Eventually I will fall asleep for a few hours.  The itching wakes me up and I head for another bath.  The day consists of snoozing between baths.  Monday, even with family visiting for Labor Day, I took 5 baths.  Even though I eat as a distraction, I have lost about 5 pounds, but then I am not exercising at all.

The progress is promising on the one hand, but the rate of improvement is depressing.  At this rate, it will take forever to get well.  I can't not go to work much longer.  What happens when I do?

August 20, 2013 - I Meet the Chair

At this follow up, the resident doctor brings in the department chair.  (I will provide names if asked)  I like him.  He shows respect for my desire to avoid steroids and acknowledges that topical steroid withdrawal is a valid phenomenon.  He explains that if it were up to him he would utilize some topical steroids to reduce my symptoms, but respects my desires.  He explains that he will have to resort to medical practices of 40 years ago.  He said if that doesn't work, then we may have to part ways as his solution at that point would include steroids.  I agree.  The plan is to immediately put me on strict bed rest with my feet elevated as much as possible, as my symptoms have not improved and the edema in my feet has not improved.  Several times per day I am to coat my body with vaseline and wrap myself in warm damp towels.  Either that or take a very long bath to hydrate my skin then slather on tons of vaseline.   I am to follow up in a week.  Fortunately, my job allows flexible hours and my manager is very understanding.  Short term medical leave has been asked for and granted.

I follow the instructions and the edema immediately eases.  After about 4 days it is minimal.  This helps my temperature control issues as well.  My skin is not as flakey, but still oozes when scratched.  The itching did not improve.  Rather than a couple, I find myself taking up to 4 baths a day.

The day before the one week follow up I have a set back and scratch off quite a bit of skin on my lower legs so I look pretty bad even though I have improved.  The docs order another week off work.

As I write this, I am a couple days away from the next follow up on September 3rd, and I am not much improved.  My primary problem at this point is the itching.  I succumb to the urge to itch and damage my skin.  The baths do not help the itching as much as they did.  Tonight, for example, my chest was itching at level I never thought was possible.  If my fingernails were not filed down to nothing I would have likely scratched down to my ribs.

I keep trying various combinations of anti-histamines and  pain relievers to try to get a handle on the itching, but absolutely nothing seems to work.  It is almost 4:00 in the morning and I sit here wide awake, my chest on fire from the scratching.  I have Kleenex under my arms and legs to absorb the ooze.  I dread going to bed (or rather going to the couch) as I know I will simply toss and turn with prickly itch coursing over my body.

I am fighting depression, but I am encouraged by the success of others and by the support from my wife.  She has been awesome.

August 3, 2013 - No More Protopic

I went to ITSAN and read what I could about Protopic.  I learned that even though it is not a steroid, it is an immunosuppressant and can have rebound effects just like steroids.  I stop using it.  In the following days my symptoms become worse, especially the temperature control.

At this point it becomes very difficult to function.  With fatigue from so little sleep, the constant itching, and being hot and cold, I am not being productive at work and am missing time.  My first grandchild is born and its all I can do to go to the hospital.  I can no longer sleep with my wife as the bed is too soft and causes prickly sweating, beside keeping her up all night.  I move onto the living room couch.  It is leather so it is easier to vacuum up the constant supply of skin flakes.  The only way I can sleep at all is to leave the TV on for a distraction.  I usually watch the Science Channel and have become an expert at astronomy.  I take 2, 3, sometimes 4 baths a day.  That is the only time I feel comfortable.  For some reason being submerged in warm water causes the itching to disappear for an hour or so.  Every evening the insane itching begins.  It starts usually in my arms.  I know I should not succumb to the pressure to scratch, but it is beyond my ability to do so.  Once I start, it spreads over my entire body.  I keep my fingernails filed completely down, but I still manage to break the skin which immediately erupts into a weeping mess.

July 24, 2013 - Visit to the University

My GP is lost and decides to send me to a UT Southwestern University in Dallas.  The resident dermatolgist at first thinks I am having a new allergic reaction, then thinks I am allergic to NSAID pain killers.  I emotionally explain TSW and what I have been through and she consults with another doctor.  They reluctantly concede that I may be having a withdrawal and respect my desire to avoid steroids.  I am not comfortable with what they want me to, but I agree to apply Protopic.

July 14, 2013 - The Big Flare Begins

This is about when the classical signs of TSW show up.  The sharp definition at the wrist, flaking, cracking, weeping, elephant skin and edema.  One of the worst things at this point is the temperature control.  I am freezing and over-heated at the same time.  I can feel the sweaty heat pouring out of my shirt, yet my feet are freezing.  Sleeping is almost impossible.  And the itching.  Oh. My. God.  I think only fellow TSW sufferers can relate to the almost unbelievable level of itch.  If I yield to the urge to itch, my body explodes with waves of itching everywhere.

July 9, 2013 - DAY ZERO

After determining that my thyroid was not part of the problem (I have had a partial thyroidectomy and take thyroid medication daily) this is the day I vow to never use steroids again.

May to June, 2013 - Getting Worse

About this time my GP is getting concerned and refers me to another new dermatologist, a national expert on steroids.  Unlike previous dermatologists I have seen, he seems to actually give a damn.  He does not acknowledge topical steroid withdrawal, but doesn't deny it either.  He tells me that I am about one day from going to the hospital because my skin barrier is seriously compromised. He convinces me that I cannot simply go cold turkey.  His plan is to give me a steroid shot and use a strong steroid ointment (Topicort) for a couple weeks, then a weaker ointment, and eventually weaning me off steroids altogether.  I reluctantly agree.

The steroid shot and Topicort make a significant improvement, but at a follow-up appointment 2 weeks later he tells me I need to continue on the Topicort, as I have not improved enough.  He asks me if I have ever had a biopsy, which I have not, as he is concerned I may have mycosis fungoides, a form of lymphoma.  Yikes, the C word.  He takes a plug from my right arm.

Test results thankfully show no cancer and no fungus, but is analyzed as "drug reaction".  He tells me that since it is not pure eczema I should go see an allergist or endroconologist and shows me the door.  He tells me I can come see him again if I need steroids.  I leave in disbelief, and the more I think about this the more pissed off I get.  This doctor not only abandoned me, he set my recovery back by months if not longer.

April 23, 2013 - I learn about TSW

Itching becoming unbearable.  I find ITSAN and pour over TSW sufferers testimonies.  I becomes obvious that Zyrtec had little or nothing to do with my symptoms and that I am addicted to topical steroids.  I break down with mixed emotions.  I am give hope that there is a cure, but I am horrified to learn that once I stop steroids my symptoms could not only get worse, but that my recovery could take years.  I am determined to give this a shot and I stop all steroids.

These pics are taken a few days after this decision:

August 22, 2012 - Allergist to the Rescue! Not.

Upon referral from GP, went to see an allergist.  I went through another round of allergy tests which turned up a couple odd things.  I have always been allergic to grasses, weeds, and trees, but this test also showed reactions to beef and wheat.  (I have since learned that TSW can really mess with allergy testing).  I try eliminating both from my diet with no effect.

Over the next months I cope with various degrees of symptoms.  If I flare up I slap on the steroids and things calm down, but come back again.  Itching, especially at night, grows progressively worse.

July 24, 2012 - Steroids to the Rescue! Not.

I went to see my GP because in addition to the itching and rashes my ankles were swelling.  He was unaware of "Zyrtec withdrawal" but was sympathetic.  Prescribed the infamous oral round of methylprednisolone.  I had immediate relief of symptoms and on second day of pills I felt unnaturally euphoric.  As soon as pills were gone, however, the itching returned.

July 1, 2012 - The First Sign

After several months of unusual itching and eczema flares, this was the first sign that something was wrong.  I run across "Zyrtec Withdrawal" on the internet and am convinced this is what I am going through.

Introduction

July 9, 2013.  The last day I will EVER put steroids on or in my body.  I am writing this 7 weeks later and I am going through the worst experience of my entire life.  

Background:  I am a 58 year old married male with life-long history of moderate, but manageable eczema.  It was worst when I was very very young, putting me in the hospital once at age 5.  At about age 10 in the 60's I had radiation treatment on my hands and feet.  About this time I started using topical steroids.  The stuff that you can now buy in a 4-pack at Costco was back then a prescription.  Once the topical steroids started, my eczema was manageable and not that big of a deal.  I had tubes of hydrocortisone everywhere and whenever it got worse, I slapped it on, sometimes everyday for long periods of time.

About 10 years ago I moved from Seattle to Texas, and my eczema got worse.  A new set of allergens to be exposed to and a hotter and dryer climate had made things worse.  My new dermatologist prescribed Protopic (a non-steroid immunosuppressent) and Clobex, a strong steroid to try to keep things under control.  It worked and for the next few years I successfully controlled my eczema.

Early last year things took a turn for the worse.  I was breaking out in areas I had never before and itching became a real nuisance.  At first I thought it was allergies or too much coffee (I am a Seattleite after all) but nothing I did seemed to help.  I was taking Zyrtec and when it wasn't helping any more and I stopped.  That's when I got my first serious flare.  My internet searching brought up "Zyrtec Withdrawal" and I was totally convinced this is what was happening to me.  In the meantime, my steroid use was not a concern to me and I continued to slather it on.  My symptoms continued to worsen.

Last April while searching for causes of unbelievable itching I was experiencing on my legs I stumbled across ITSAN.  As I read the list of symptoms I was like OMG.  I had every single one.  When I looked at all the pictures that could be pictures of me I broke down.  My elation of learning that there is a cure soon turned to despair when I learned not only how bad it can be, but how long it could take.  I am 58 and have been on steroids almost my whole life.  I could be in a living hell literally for years. 

So, one may wonder why if I found ITSAN last April why my last date of steroid use is July 9.  To make a long story short, I have been to many doctors and one of them (considered to be one of the world's leading experts on steroids) convinced me that he was about to put me in the hospital because my skin barrier was compromised so badly and that I could not go cold turkey.  He promised me that if I took a cortisone shot he would wean me off of topical steroids.  I agreed.  If I can calm myself down enough to write a publishable post about this experience, I will.  

Since then I am now going to UT Southwestern and am being seen by a couple dermatologists there, including the department chair.  They do acknowledge steroid withdrawal is real.  They do not agree with my complete insistence that I go cold turkey, but respect my decision to do so and are working with me.  I will post more about this.

I decided rather late in this process to document this experience via this blog, but I think it is important.  I have been so helped and inspired by reading others, and maybe I can help someone else.  Also, this a more appropriate forum than, say, my FaceBook page, where I try to keep things light.