Topical Steroid Withdrawal- Taking it one day at a time

Monthly Archives: April 2013

Hi all,

So my trip to Texas was great! Unfortunately, on the plane, I started to flare a bit. I just snapped some quick picture of what a flare looks like at 7.5 months. They suck and they interrupt progress, but it’s what the blood vessels gotta do to heal.

I will have C take a pic of my back tonight.

So with a flare, itching is usually worse, I get splotchy pink, might ooze a little bit from a few spots, and things might get a little swollen. I’m about to start my period which without fail causes me to flare.

Anyways, here are a few quick shots.

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I decided that I was going to take some time off from obsessing over topical steroid withdrawal and what the future holds. I took a vacation from work, from home, from my dogs, from life, really. Topical steroid withdrawal was really starting to take a toll on my mental state. In the beginning, things were so bad, I was in survival mode. I was always in a hyper-state, trying to just make it through the day, through the excruciating pain, through the bone itching, through all of it. But once things turned around, I had to change my point of view. Things were bearable at about 5 months. I started working more, making court appearances, going out to dinner with friends, exercising and doing yoga, and getting a little sun.

I don’t think my skin got any worse between 5 and 7 months. It was manageable, but still bad. I still had flares, albeit much more minor. I was still terribly itchy with nerve pain. I still had to have two baths a day. Waking up in the morning, my skin was so dry it ripped open and cracked off. I decided to work on being positive and focusing on the positive changes this has brought in me. C started having some minor but painful health problems. Because I was doing better, I decided to work harder to take care of myself, our place, and our dogs. I told myself, I’m better than before, so I can do this no problem. All of that pretending that I wasn’t still miserable started to wear me down. At 7 months I was just worn down. It hit me like a ton of bricks. I realized, I’m not OK. I still feel like shit, I’m still sick, and this is going to take a long time. I was so tired and thinking, I might have to go through another year of this??? The thought of that was just totally overwhelming.

Anyways, I’ve been thinking about TSW and the various aspects of suffering we must endure. The ITSAN group is inundated with newbies and is growing rapidly today. So, I want to take this time to write about what I think people can expect in TSW. At 7 1/2 months, I’m approaching becoming a veteran, and I’ve had a moderate, full body withdrawal (in severity).

1. TSW becomes bearable once you realize what it entails and how long it will take.

Almost every single person who finds the ITSAN group believes and hopes that they will be one of the lucky ones who will be healed in 6 months. The truth is that almost no one heals that fast. Since I have been in the ITSAN group, I can think of only one person who has healed in 6 months and she was a very very short term OTC hydrocortisone user.

I think for the vast majority of people going through topical steroid withdrawal, the minimum time to healing is 1 year. I would even venture to say 18 months.

Withdrawal is terrible for every single person. Sure, some people have a less severe withdrawal than others, but every single person goes through absolute hell. If you used mid-strength or potent steroids, took pills, got shots, or used steroids on your eyelids for years, you are going to have a really tough time.

Accepting this process and what it entails doesn’t usually come until you reach your peak (or rock bottom, whichever you prefer :)) The beginning is so scary, you read all of these terrible things on the forums and blogs and just hold on to hope that you have already gotten as bad as you are going to get. And it takes a long time for it to get worse, often months. You hold onto hope that at least you only used for 5 years rather than 30, or that you never took prednisone, or that you never got an injection, or you never used it on your face, etc. Of course those things are factors in the process, but like I said, no matter what, it is going to be absolute hell.

2. It has to get worse before it gets better.

I hit my rock bottom at 3 1/2 months, which is fairly common. The first three months of TSW were terrible for me. I was so sick, beet red, oozing, shedding, the works. I remember cups of skin falling off of me in my office.. going into the bathroom and scratching for 45 minutes, tearing up my skin, crying, and flipping out. I thought it was absolutely terrible. And then one day, I think a few days after my three monthiversary, I couldn’t get up. I couldn’t wear clothes. All I could do was sit in the bath and cry. I flew to Texas in a terrible flare. My face was oozing, I hadn’t worn clothes in a week and I was really afraid of having to wear a shirt. I completely drugged myself, and tried to sleep. Things got worse for a few days in Texas. I went to my family’s Christmas totally drugged and in horrific pain. It took everything for me to not just start sobbing.

After this period, I have never gotten that bad. I’ve been progressively getting better. I’ve had flares but never even close to that period. What I didn’t understand until I got to that point, was that it had to get absolutely horrible before I could get better.

3. Having an altered physical appearance is the least difficult part of TSW.

It was really hard to look so bad in the beginning. I had to go to court, see clients, and see friends. I was embarrassed and humiliated about the crust on my face, the flakes falling off of my scalp and getting stuck in my hair, the swelling, hair loss, ooze soaking through my shirts on my back, the list goes on and on. But once I was so sick, I stopped caring. Being in excruciating physical pain for weeks or months on end will really teach you about what’s important. I truly realized and fully understand that beauty and appearance are fleeting.

I think accepting a temporary altered appearance is another thing that takes time. I think it only comes once you reach your peak.

After going through TSW for 7 1/2 months, I really think that looking ugly is the easiest part of this. Yeah, people stare, and it pisses me off, but in a few months, I’m going to have beautiful, perfect skin. Having struggled with my skin a lot the last few years, that is huge! I will be able to wear tank tops, backless things, etc. These are things I had to worry about before TSW.

At this point, I’d trade looking bad with feeling better in a minute. I’d rather look as bad as I did in the beginning, but not have to wake up first thing in the morning and do a frankenstein walk to the bath because my skin is so dry it is tearing open. I’d trade my clearing up face to not have stabbing pains in my back and itchy bones. Being ugly or unattractive is a hell of a lot easier to deal with this than the terrible symptoms.

4. There are positives to TSW

Going through TSW will show you how strong of a person you are. To get through the physical and emotional pain for such a long period requires that we gather every ounce of strength we have. It also forces us to be vulnerable and just break down sometimes. It will teach you what is important – health, family, and living life to its fullest. It makes you appreciate the small things in life, like going out to a restaurant with friends, walking your dog, sitting outside on a beautiful day, being able to wake up feeling good. It will teach you who is a good friend, and which friends can’t be relied on. You will value your partner, parents, kids, and anyone who has supported you through this. You will learn to SLOW DOWN.

Most importantly, you will learn to appreciate and love everyday of your healthy life.

I think everyone is on their own TSW journey, both physically and mentally. I don’t think you can accept all of these things until you experience them. So maybe someone in the early period will read this and later on in the process, think back to this and realize they have come full circle and accepted the reality of the journey.


First picture is two weeks ago, second is from this mprning

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More pictures.. I haven’t flared since I’ve been here. My back is a little bit irritated but overall it is fine. I’ve been exercising and sweating a lot. I think this mini vacay is just what I needed.

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I have been sweating for a few months now, but it seems the sweating has really picked up. The slightest increase in heat causes a sweat storm.

Just snapped some pics of it here

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Anyways, I’m in Texas visiting my parents for a few days. I needed a little break from life and work to just recuperate. I went swimming in my aunt’s salt water pool. It felt really nice but I think it irritated my skin a bit.

This morning my skin was white and smooth with some eczema like patches. Now I have quite a few cuts, as you can see. The itching has been terrible the past few weeks, which is probably what is getting me down. Being back in Texas is good because I’m remembering how bad I was and how far I’ve come. It’s just hard to see it because I’m deep in shit and can’t see out to it. Last night my mom asked if I needed to take a bath right before bed and I laughed. I forgot that I had to take a bath right before bed. I would get in bed smothered in Vaseline. Ugh.

Hope everyone is having a tolerable, if not great day. Hang in there everyone! We will get through. I leave you some pictures from this afternoon.

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And of course, I know some of you are here for the dogs. Here is a picture of me with my canine cousin!

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Hi all,

My skin is starting to come out of the last flare and has been shedding all over. Yesterday the tight layer of skin on top cracked and shed off, leaving the top layer very very sore.

I’m getting away for a few days to stay with my parents and hope getting away from stress will help push me out of this stagnation.

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The thing about this is that things can change so fast. Looking at the progress is so important to staying sane in this marathon.

Here are some bad pictures from around 4 months through 6 months.

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Here is my back this morning. This is the best I have looked in MONTHS!

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