12.04.2012- Day 155 of Withdrawal
We have made so many friends through this process, and they are all enduring Topical Steroid withdrawal.
I Skype with many of them weekly, and some have also taken on some of our ideas for healing.
Below is the story of one of our friends Susan, she has kindly let me share her story with you.
Jake is feeling great today, looking great and enjoying getting up for a days work.
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Jake Love's golf... he never stops
I love him so much for his passion |
Thank-you Susan for letting me post your story xx
SUSAN’S ECZEMA & HEALING STORY:
I currently live in California, I’m 59 years old, and I’m in good health besides my skin problems.
1. My steroid & allergy history:
I never had allergies that I was aware of until I lived in Central America from 1977-1979. During that time, I developed allergic rhinitis and I often had a stuffy, runny nose, couldn’t breathe, etc., probably due to the tropical foliage and lots of dust and chemicals I was working with in a small town of weavers.
When I returned home to New York, my allergies decreased but continued somewhat.
In about 1984, I started having itchy, scaly eyelids and I went to my uncle, an ophthalmologist. He gave me a tube of cream without telling me what it was, and I used it and it magically made my eyelids improve. It was betamethasone valerate, a steroid. I used it on and off for a few years, but not that often.
In 1987, I moved to California & my allergies went wild again. When I was pregnant with my first child in 1989, I could hardly breathe because my sinuses were so clogged, and I was having some asthma-type wheezing. I went to an allergy doctor who gave me a steroid inhaler for my allergies, called Beconase. He told me it was perfectly safe and I could use it forever with no side effects. It worked miraculously well and my allergy symptoms all cleared up. My son was born in 1990, and I’ve been using similar types of steroid inhalers for allergies, daily since then.
I went through a course of allergy shots from 1995-1997, but they didn’t improve my allergies at all.
I continued to have itchy eyelids and, in about 1998, I went to my local ophthalmologist and she gave me FML - a steroid ointment made specially for the eyes. I don’t know how strong it is compared to other steroids.
She also gave me non-steroidal eyedrops called Patanol, which I’ve used continually since then.
I used the steroid cream it for a few months, then I went back to her and she told me I shouldn’t use it so long, but gave me no other recommendations other than that I should see a dermatologist. She acted as if using it for a few weeks should be enough to make it go away permanently, which of course it wasn’t.
I went to see the derm. she recommended and all she did was offer more steroid creams & ointments. I rejected her suggestions and kept using the opthalmologist’s ointment on and off, as well as the Patanol.
Also in about 1998, I started feeling itchy in other parts of my body. At that point, I avoided using steroids on my skin apart from my eyelids and the itchiness came & went. I can’t remember what I did for it, other than scratching and maybe moisturizing.
At the end of the summer in 2006, I suddenly became torturously itchy (maybe from the heat and sweat) all over my back and I scratched myself so much that it became very red and scary-looking (nothing compared to what I’m experiencing now, though).
I couldn’t take it and I went to my dermatologist (who, up until then, I had been going to only for skin cancer checks, and ignoring her steroid advice). She prescribed some strong type of steroid cream, which I used for about a week and it didn’t work.
I then went to a new allergist recommended by a friend. To make a long story short, he convinced me low-strength steroid creams were totally harmless and I started using 1% hydrocortisone ointment regularly. After a couple of weeks, my back stopped itching and I switched from steroids to Aveeno moisturizer every day. That problem didn’t come back. But I continued to have problems with my eyelids, wrists, a couple of places between my fingers, sometimes under my breasts or on my shoulders. Since my allergist assured me it was safe, I was using the hydrocortisone ointment almost every day on my eyelids, wrists or some other little area on my face or shoulders. I alternated between .5% OTC, 1% OTC & a prescription 2 ½%. I used these every 2 or 3 days for the past 5 years.
About 2 years ago, I started having more asthma symptoms & yet another allergist put me on Asmanex, a cortico-steroid inhaler for asthma, which I’ve been using regularly since then.
After that, I went through another 2-year course of allergy shots, which ended approximately last July. I didn’t see any improvement at all to my allergies, eczema or asthma, $2,000.00+ later.
This past summer, the eczema was getting worse, and I was using the 2 ½% more and more. I also occasionally used some Betamethasone Valerate that I had left over from years ago from my uncle or Betamethasone Propionate that my allergist gave me. Although my allergy doctor always recommended that I hit it hard with strong enough stuff to make it totally go away, I was always somewhat afraid of the steroids and never used it enough for it to totally go away.
My allergy symptoms were also getting worse, even after the 2 years of allergy shots. I was still on the steroid inhalers but had a lot of breakthrough symptoms such as sinus problems, sneezing, etc.
2. Getting Off Steroids
At the beginning of October, 2011, I stopped using steroid cream. It was actually accidental, not really planned. My skin had been getting worse and I decided to try using aloe and some other products, so I wasn't using the steroid creams for a few days. Suddenly my skin got much worse and it spread all over my arms. My arms became totally red. I thought it was too large an area to use steroid cream on, so I kept trying other stuff with no improvement. After about a week, I realized the worsening had coincided with the stopping of the cream. I thought maybe it was a rebound effect, so I googled steroid rebound and I found an Australian website written by a guy name Peter about his wife in Australia. I found out about steroid withdrawal and I listened to Dr. Rappaport’s teleconference and read his articles.
I was heartened to understand what was happening to me and I made an appointment to see Dr. R in Beverly Hills on October 31st, at which time he confirmed my diagnosis.
This is not to say that the skin stuff has not become an all-encompassing horror.
On October 10th, I went to consult with a homeopathic MD here in LA. He suggested I take a food-allergy blood test to see if that would help. In order to do this, I had to stay off my allergy & asthma steroid inhalers for 3 days. I didn’t think I could do it. Any time in the past that I had tried it, I immediately developed terrible allergy symptoms. I thought I’d be very sick after the 3 days, but decided to do it in order to be able to take the blood test. Shockingly, nothing happened! I was off the steroid inhalers for 3 days, 6 days, 9 days and was barely having any breathing problems! I couldn’t believe it! After 22 years! My homeopathic MD calls the skin “the lungs inside out”. He thinks the suppression of skin symptoms with topical steroids caused the problem to go inside and affect my lungs. Being off the topicals might be the cause of my improved asthma.
Towards the end of the 9 days, my allergy symptoms were bothering me again. I went back on the nasal inhaler, but not the asthma. As of today, I’ve been off the asthma steroids for almost 6 months with no asthma! I went back on the nasal but found I only need to use it once a week now, instead of every day.
3. My symptoms after 2 months of TSW (written in December, 2012):
Meanwhile, my skin is getting worse and worse, like everybody else’s. It itches A LOT, especially at night, and I can't sleep without some kind of sleeping pill. I have to fight so hard to keep from scratching my arms off, and they are terribly red, puffy & all cut up from my nails. Sometimes I feel depressed and anxious. The redness & itchiness is staring on my back and legs, areas that were not effected at first. My skin is so sensitive that I can barely wear a long-sleeve shirt even when it is quite cold. Luckily, I live in California. My husband likes to use flannel sheets in the winter (it does get somewhat cold here), but to me, soft cotton flannel feels like the roughest wool sweater. For the first few weeks, I couldn’t tolerate anything at all on my skin. At 2 months, I could use Vaseline and sometimes Aveeno Eczema Therapy. I also got a cream called Prean from Dr. Rappaport that works pretty well. My homeopathic doctor told me to mix it with 2 Essential Oils that are anti-inflammatory & I think they make it more tolerable. They are German Chamomile & Heliochrysum Italicum.
My eyes are totally puffy, red & irritated & sometimes other parts of my face are, too. I have cuts on my eyelids and around my eyes and mouth from scratching & rubbing.
My symptoms are:
Very swollen eyes
Lots of itching
Can't sleep because of the itching
Skin sometimes radiates heat/Sometimes I shiver with cold for no apparent reason
Skin is very sensitive - sometimes even cotton shirts feel like sandpaper
Skin is leathery in a lot of areas - neck & arms mainly
Skin is very dry and flakes all over the place
Face and arms are sometimes red, but not always
Lots of cuts all over wrists & arms from insane scratching
Definite line where red stops between wrists & palms
Bad spots behind knees
Red spots on legs & little bumps
Totally preoccupied with my skin lately.
So, when I showed Dr. Rapaport & told him this, he basically said "YOU HAVE STEROID WITHDRAWAL! STOP TRYING TO DIFFERENTIATE BETWEEN ONE SYMPTOM AND ANOTHER! Not everyone is exactly the same and you just have to be patient & get through it, and we're here to help you and hold your hand."
Right now I dread going to bed. It's so uncertain what will happen.
You never know what's going to happen next. For example, one day I had a pretty good day without being too itchy and then, as soon as the sun went down, I started to itch and it continued all night.
I haven't had the leaking of fluid, but many other people have written about it, so this is also common. I can't keep myself from scratching myself bloody. I try not to, but it's an uncontrollable impulse.
The steroids do so much more damage to our bodies than I ever realized.
I also noticed that my urine is darker and stronger than ever.I always drank a lot of water & my urine was usually clear. I think maybe the heat in my body is absorbing the water and so the urine is more concentrated. When I wake up in the morning, unlike in my normal past, I hardly have any pee waiting to come out.
I've been taking Ambien or Melatonin to sleep. They each have their pros & cons. I hate to use sleeping medication, but my nights are just too torturous without them. When I've taken Benadryl or Atarax, either they don't work, or I wake up feeling emotionally weird (anxious).
I've been trying a few things like Ambien & Anti-histamines, and I find that when I take them I wake up depressed. Also, just looking into the black hole of how long this will take is quite depressing. Sometimes I don't itch during the day and I start feeling almost normal, and then suddenly the itching starts again and I plunge into despair. We have to keep in mind that this WILL end eventually and we will go back to normal.
My legs and back were unaffected at first and then suddenly they got all bumpy and sandpapery, also with some red blotches.
I also agree about the intense itching. I keep myself from scratching all day sometimes, feeling happy that my skin is starting to heal, and then in 1/2 hour fit of itching I destroy it all over again and end up with new wounds and have to start all the healing from square one. (I was going to say "from scratch" but that was a painful metaphor I chose to avoid).
I've thought about itching and scratching a lot. It's really like an addiction. You tell yourself for hours that you're not going to scratch, and then suddenly you're itching and nothing in the world matters except SCRATCHING! You forget all your resolutions and even tell yourself excuses about why it's acceptable, even at the same time as you're aware of the damage you're doing to your skin. Also, if it's not inappropriate to say this, the feeling of scratching is sometimes almost orgasmically intense - as is the feeling of super hot water, I've noticed. But I stay away from the hot water because I know it's too drying to the skin. I bet if we could all refrain from scratching, our skin would heal so much faster.
The back of my right knee (along with both wrists) is my worst area. I keep tearing it apart over and over, can't help myself.
4. My Symptoms at 6 months (April, 2012):
My back, torso & most of my legs have normal skin now. The back of my knees, arms from elbow down, top of hands, eyes, chin, neck & upper chest are still red, itchy and very sensitive. My temperature and energy levels are now normal. I can exercise and do all activities except sitting still. I can't sit still because I get too itchy. I still dread bedtime, never knowing how my sleep will be. I can usually get about 6 hours if I stay in bed until noon. I usually don't go to bed until about 3 am.
