Trusting my doctor's advice is what got me into this steroid-induced nightmare, so today I am going all "conspiracy theory" and highlighting a report that was published back in 2006 about the dangers of prescribed medicines.
The report was compiled by a group of researchers, who entitled their work "Death by Medicine". The report claims that the number of deaths caused by conventional medicine in the U.S is a staggering 800,000 a year. This is more than the number of deaths by cancer or heart disease. This makes death by medicine the leading cause of death in the U.S.
You can read the report here
I am not anti-doctors or conventional medicine by any means, but my experience with steroid cream addiction has led me to be more circumspect when it comes to prescribed medicine. We cannot blindly accept prescribed medication without questioning its safety and researching possible side effects before we use it. The onus is on us as patients to inform and educate ourselves about the medicines we take into our bodies every day. That goes for so-called "natural remedies" too.
Thursday 31 January 2013
Wednesday 30 January 2013
Can a Cream Cure Eczema?
Type "cure eczema" into Google and you will no doubt be presented with an impressive looking list of magical potions and lotions claiming to do just that. Companies are more than happy to take the money of desperate punters in search of a cure.
The sad truth is that there is no cream that can cure eczema. But in our desperate attempts to cure ourselves, we turn to anything promising a cure with hope and enthusiasm, hoping it will be the "next big thing". Desperate parents spend a fortune on creams promising to cure their baby or young child who is suffering. The long lists of positive testimonials seem to add weight to the impressive claims that the creams make.
Of course, many of these creams contain steroids, whether they be hidden or boldly declared on the packaging. Once on the skin, the steroids do their work, constricting blood vessels under the skin and reducing redness, resulting in a pleasing appearance to the skin. Impressive? Yes. A cure? No.
In fact, as my experience shows, reliance on creams for a cure has proved very disappointing in the long term, leading to my addiction to steroid creams and a very uncomfortable rebound and withdrawal period thus far.
Well meaning friends offer advice about creams that will "cure" you. One such friend offered me a tiny pot of balm as a gift yesterday, out of pity for my suffering, promising me that it would cure me. I checked the ingredients and luckily there was nothing harmful in the cream, it mainly consisted of paraffin, olive oil and beeswax, which I knew would moisturise the skin, but not cure it. I thanked her for the cream and added it to the pile of bottles and tubes that I have already accumulated in my bathroom.
Don't get me wrong; creams have their place when managing eczema, TSW or any other skin condition. In fact, I always tell those going through withdrawals that one of the most important things is to find a good moisturiser early on. The goal of moisturising the skin is to make it comfortable, not cure it. I liken the use moisturisers to the use of sedatives like morphine is a sick patient. The morphine is not intended to be a cure, but it keeps the patient comfortable and able to tolerate the pain. Moisturisers do the same for damaged skin; they make the skin comfortable and less tight. They will not cure it.
I hope that this message goes out to people considering spending a lot of money on creams that they think will cure their eczema or speed up their TSW. Don't bother. Many have found benefit from simple ointments such as white soft paraffin, coconut oil or palm shortening.
The natural pathology of eczema is that it runs its natural course when left alone. My daughter gets the odd patch on her neck; I leave it alone and it goes away after a few weeks or months BY ITSELF. No quick solutions, but given time, eczema will go away and in most people, by the time they reach adulthood, it is gone for good. For the few unfortunate adults that have persistent patches remaining, identifying triggers and avoiding allergens is a good way to manage the skin.
The trouble is, we live in an I WANT IT NOW, Verruca Salt kind of world. The saying is true: Buy now, pay later. By insisting on instant "cures" such as steroid creams, we pay the price long term with addicted, rashy skin that persists for years after the original disease should have gone away on its own.
The sad truth is that there is no cream that can cure eczema. But in our desperate attempts to cure ourselves, we turn to anything promising a cure with hope and enthusiasm, hoping it will be the "next big thing". Desperate parents spend a fortune on creams promising to cure their baby or young child who is suffering. The long lists of positive testimonials seem to add weight to the impressive claims that the creams make.
Of course, many of these creams contain steroids, whether they be hidden or boldly declared on the packaging. Once on the skin, the steroids do their work, constricting blood vessels under the skin and reducing redness, resulting in a pleasing appearance to the skin. Impressive? Yes. A cure? No.
In fact, as my experience shows, reliance on creams for a cure has proved very disappointing in the long term, leading to my addiction to steroid creams and a very uncomfortable rebound and withdrawal period thus far.
Well meaning friends offer advice about creams that will "cure" you. One such friend offered me a tiny pot of balm as a gift yesterday, out of pity for my suffering, promising me that it would cure me. I checked the ingredients and luckily there was nothing harmful in the cream, it mainly consisted of paraffin, olive oil and beeswax, which I knew would moisturise the skin, but not cure it. I thanked her for the cream and added it to the pile of bottles and tubes that I have already accumulated in my bathroom.
Don't get me wrong; creams have their place when managing eczema, TSW or any other skin condition. In fact, I always tell those going through withdrawals that one of the most important things is to find a good moisturiser early on. The goal of moisturising the skin is to make it comfortable, not cure it. I liken the use moisturisers to the use of sedatives like morphine is a sick patient. The morphine is not intended to be a cure, but it keeps the patient comfortable and able to tolerate the pain. Moisturisers do the same for damaged skin; they make the skin comfortable and less tight. They will not cure it.
I hope that this message goes out to people considering spending a lot of money on creams that they think will cure their eczema or speed up their TSW. Don't bother. Many have found benefit from simple ointments such as white soft paraffin, coconut oil or palm shortening.
The natural pathology of eczema is that it runs its natural course when left alone. My daughter gets the odd patch on her neck; I leave it alone and it goes away after a few weeks or months BY ITSELF. No quick solutions, but given time, eczema will go away and in most people, by the time they reach adulthood, it is gone for good. For the few unfortunate adults that have persistent patches remaining, identifying triggers and avoiding allergens is a good way to manage the skin.
The trouble is, we live in an I WANT IT NOW, Verruca Salt kind of world. The saying is true: Buy now, pay later. By insisting on instant "cures" such as steroid creams, we pay the price long term with addicted, rashy skin that persists for years after the original disease should have gone away on its own.
Monday 28 January 2013
The Big Asthma Plan
I am still not sure whether my asthma is steroid induced or not. I am on the fence. On the one hand it could be, because I had a period of several asthma-free years in my late teens and my asthma came back when I started using steroid creams regularly. On the other hand, I have not had to increase the steroids to get an effect, like I did with my topicals.
After my scare a couple of days ago, I am putting the following regime in place:
1. Monitoring when I use my seretide by marking it on the calendar. At the moment, I am going to try dropping every third puff, as it was too much dropping every second puff.
2. Rinsing my mouth after puffs to prevent absorption of excess steroid.
3. Monitoring peak flow. If it drops to 250, reconsider increasing steroid dose (maybe drop every fourth puff instead). My average PF is 300. I would like this to increase if possible.
4. Try to do aerobic exercise to the point of breathlessness once a day.
5. Use my powerbreathe device twice a day to strengthen inspiratory muscles.
6.Research foods that are anti-inflammatory. So far, I have read that broccoli is good...
7. Try and lose some of this excess weight. I gained quite a bit after stopping steroid creams. This could be due to the changes in cortisol levels, as cortisol has an effect on body fat. It could also be that I have been much more sedentary since quitting the topicals, as sweating makes me itchy!
8. Do deep breathing exercises at least once a day. Aim to fill my lungs to max capacity to keep the airways clear and open.
If my lungs feel comfortable on this regime, I will continue for a month and then review my seretide dose, with the aim of stopping altogether eventually. This may take many months. On the other hand, it may not be achievable at all, I will wait and see. I am not going to be stupid about this.
After my scare a couple of days ago, I am putting the following regime in place:
1. Monitoring when I use my seretide by marking it on the calendar. At the moment, I am going to try dropping every third puff, as it was too much dropping every second puff.
2. Rinsing my mouth after puffs to prevent absorption of excess steroid.
3. Monitoring peak flow. If it drops to 250, reconsider increasing steroid dose (maybe drop every fourth puff instead). My average PF is 300. I would like this to increase if possible.
4. Try to do aerobic exercise to the point of breathlessness once a day.
5. Use my powerbreathe device twice a day to strengthen inspiratory muscles.
6.Research foods that are anti-inflammatory. So far, I have read that broccoli is good...
7. Try and lose some of this excess weight. I gained quite a bit after stopping steroid creams. This could be due to the changes in cortisol levels, as cortisol has an effect on body fat. It could also be that I have been much more sedentary since quitting the topicals, as sweating makes me itchy!
8. Do deep breathing exercises at least once a day. Aim to fill my lungs to max capacity to keep the airways clear and open.
If my lungs feel comfortable on this regime, I will continue for a month and then review my seretide dose, with the aim of stopping altogether eventually. This may take many months. On the other hand, it may not be achievable at all, I will wait and see. I am not going to be stupid about this.
Sunday 27 January 2013
In-Between Land
Today I want to talk about that boring stage when you are past the worst of the flaring and you are just waiting to heal.
That's where I am now. I call it limbo-land.
It is lovely that I am over the horrible initial flaring stage; I am less red and have lost a lot of the bad initial symptoms such as tiredness, swelling burning skin and wet wounds. For this I am grateful. I know a lot of people going through this hell would be happy to be where I am right now.
But to be honest, this whole process feels like sitting in a waiting room.
I am well enough to go about my daily business, but my skin is still pink and it still oozes at night. I think a lot of my friends think I am mad when I keep insisting that "I will heal", despite still looking pretty lousy after 14 months off steroids.
I really do believe I will heal, but haven't a clue when. Nothing seems to be happening. So I can't go back to steroids and I just have to sit it out until things get better, which could still be a couple of years from now. In other words, just knuckle down and get on with life.
Great.
That's where I am now. I call it limbo-land.
It is lovely that I am over the horrible initial flaring stage; I am less red and have lost a lot of the bad initial symptoms such as tiredness, swelling burning skin and wet wounds. For this I am grateful. I know a lot of people going through this hell would be happy to be where I am right now.
But to be honest, this whole process feels like sitting in a waiting room.
I am well enough to go about my daily business, but my skin is still pink and it still oozes at night. I think a lot of my friends think I am mad when I keep insisting that "I will heal", despite still looking pretty lousy after 14 months off steroids.
I really do believe I will heal, but haven't a clue when. Nothing seems to be happening. So I can't go back to steroids and I just have to sit it out until things get better, which could still be a couple of years from now. In other words, just knuckle down and get on with life.
Great.
Friday 25 January 2013
Maybe Weaning Off the Inhaler Was a Bad Idea.....
As you may have read in my last few posts, I had decided to step down my inhaler usage as I wondered if the steroid component of the inhaler was hindering my healing, or possibly causing my asthma. For the last few days, I have just been taking one puff of Seretide in the mornings instead of one in the morning and one at night.
Well, this morning, I woke up at 6:30 wheezing and coughing. I was bringing up lots of mucus and my chest felt tight. I took the inhaler, but the chest tightness persisted throughout the morning. My peak flow was also dangerously low, about 250, which, for some people would warrant a stay in hospital!
I decided I will have to rethink the whole inhaler issue. I seem to need the steroid and am not willing to compromise my health. I think it would be more sensible to perhaps drop every third or fourth dose rather than every second dose.
Of course, it could well be the case that my asthma is NOT steroid induced. maybe it is just plain 'ol asthma! My dad and grandad both have chronic bronchitis, so it could be that.
I will be more cautious about dropping doses and look into steroid-free inhaler alternatives. For now, I'm stuck puffing the 'roids.
Well, this morning, I woke up at 6:30 wheezing and coughing. I was bringing up lots of mucus and my chest felt tight. I took the inhaler, but the chest tightness persisted throughout the morning. My peak flow was also dangerously low, about 250, which, for some people would warrant a stay in hospital!
I decided I will have to rethink the whole inhaler issue. I seem to need the steroid and am not willing to compromise my health. I think it would be more sensible to perhaps drop every third or fourth dose rather than every second dose.
Of course, it could well be the case that my asthma is NOT steroid induced. maybe it is just plain 'ol asthma! My dad and grandad both have chronic bronchitis, so it could be that.
I will be more cautious about dropping doses and look into steroid-free inhaler alternatives. For now, I'm stuck puffing the 'roids.
Thursday 24 January 2013
Teleconference With Dr Rapaport
Itsan have just released the recording of the last international teleconference with Dr Rapaport.
You can listen to it here.
The conference touches on many aspects of steroid addiction and withdrawal that have not been covered in previous conferences or on the website. Dr Rapaport discusses the length of flares and mechanism of flaring and answers questions about use of steroids.
I found it really interesting when he said that if someone is addicted to steroid creams and stops and heals, they could have a reaction if many years later they were to use asteroid cream for a rash because the body "remembers" the reaction that it has to steroids. The moral of the tale is that once you have stopped steroids-stay off them!
He talked about inhalers again, which made me think more about my own inhaler usage. I would really like to get off them because I worry that I won't heal properly if I am still taking steroids into my body. I have cut down to just a morning dose.
You can listen to it here.
The conference touches on many aspects of steroid addiction and withdrawal that have not been covered in previous conferences or on the website. Dr Rapaport discusses the length of flares and mechanism of flaring and answers questions about use of steroids.
I found it really interesting when he said that if someone is addicted to steroid creams and stops and heals, they could have a reaction if many years later they were to use asteroid cream for a rash because the body "remembers" the reaction that it has to steroids. The moral of the tale is that once you have stopped steroids-stay off them!
He talked about inhalers again, which made me think more about my own inhaler usage. I would really like to get off them because I worry that I won't heal properly if I am still taking steroids into my body. I have cut down to just a morning dose.
Wednesday 23 January 2013
Entering Month 15 (photo)
Hoorah! I just passed the 14 month marker! Another month under my belt and another step closer to healing.
The skin on my arms, legs and torso is soft and normal. The only areas affected by TSW are my face and neck and I also have a little bit on my hands.
Here is a photo of me today:
So yes, I am still a bit blotchy, but not so red today. It really seems like the skin is going back to its normal colour. When I am out and about, I don't feel like I look all that different to anyone else. I went to the theatre last night with friends and didn't feel self conscious. One friend told me how well I was looking, which was a real boost.
It has been snowing heavily here in the UK and the change in weather seems to have done my skin good. It suffered in the cold, grey rainy weather, but now the snow is here I think my skin is getting some UV at last which seems to be clearing me up nicely. If only it was warm enough to get outide in a T-shirt and shorts! The snow seems to muffle the bitterness of the weather, so it is not all that cold when I go out. I went out with no gloves today and my hands stayed toasty.
I have been reading a lot on the Itsan forums about people who have had their asthma clear up once they stopped the steroids. I have tried to quit the inhaler a few times, but my asthma got worse. I do feel that my asthma is steroid induced, as I had a long period in my teens where I didn't need an inhaler at all and my asthma only came back after I had been using the steroid creams heavily for a couple of years.
However, great caution is needed. I do need to be able to breathe! I am tapering the Seretide (Advair) very slowly. I have dropped my night dose and am just taking a single puff in the mornings. I rinse my mouth out to get rid of any excess steroid. I have been monitoring my peak flow, which seems OK and I have a Powerbreathe device, which I will start using more to try and strengthen my lungs. I really want to get off the steroid inhalers, but not at risk to my life. I will probably stay at one dose for a month and then try and drop another dose next month. Slowly does it. BTW, I am not advising that anyone else does this. I am just recording my own choices. Time will judge whether they are good or bad.
The skin on my arms, legs and torso is soft and normal. The only areas affected by TSW are my face and neck and I also have a little bit on my hands.
Here is a photo of me today:
It has been snowing heavily here in the UK and the change in weather seems to have done my skin good. It suffered in the cold, grey rainy weather, but now the snow is here I think my skin is getting some UV at last which seems to be clearing me up nicely. If only it was warm enough to get outide in a T-shirt and shorts! The snow seems to muffle the bitterness of the weather, so it is not all that cold when I go out. I went out with no gloves today and my hands stayed toasty.
I have been reading a lot on the Itsan forums about people who have had their asthma clear up once they stopped the steroids. I have tried to quit the inhaler a few times, but my asthma got worse. I do feel that my asthma is steroid induced, as I had a long period in my teens where I didn't need an inhaler at all and my asthma only came back after I had been using the steroid creams heavily for a couple of years.
However, great caution is needed. I do need to be able to breathe! I am tapering the Seretide (Advair) very slowly. I have dropped my night dose and am just taking a single puff in the mornings. I rinse my mouth out to get rid of any excess steroid. I have been monitoring my peak flow, which seems OK and I have a Powerbreathe device, which I will start using more to try and strengthen my lungs. I really want to get off the steroid inhalers, but not at risk to my life. I will probably stay at one dose for a month and then try and drop another dose next month. Slowly does it. BTW, I am not advising that anyone else does this. I am just recording my own choices. Time will judge whether they are good or bad.
Thursday 17 January 2013
Guest Post: Jen's Story
My name is Jen and I live in Georgia, USA. I am 41 years old. My background is that I had horrible hay fever as a child. I had no skin issues until my early twenties. They were on and off for years. Nothing was really bad until my late 30’s when I started having issues around my eyes. Like most here I started steroids and it got bad quickly. Before long I was on Triamcinolone and then oral steroids. December 2011 I went to a top Derm in Atlanta who wanted to start me on high dose orals and then methotrexate. Thank God I found Kelley Palace and ITSAN after a month of oral steroids and taking only one methotrexate pill and I knew I had found my answer. Not a hundred percent sure but I think my accumulative steroid use is probably 5-6 years. I printed and highlighted all the papers from Dr. Rap and thankfully my husband and Mom were on board.
I started withdrawal on January 13, 2012. Now that we are at the year mark I am having memories already of a year ago of what was going on. Already thinking ahead to Super Bowl Sunday which was HELL! It was a pretty bad year. I have never experienced anything like it. EVER! Thank God for the support of my family and friends.
The first few weeks I thought it was the food and I was super scared to eat anything. I went to a naturopath who did a ton of tests that cost me over $1000. She promised I would be perfect in two weeks. I went back several times with my red face and red and swollen body and she thought I was cheating on her diet which I was not. I knew deep down it was TSW and finally quit her.
I could write a book about my afflictions but do not want to bore everyone. I wrote in a journal for the bad months. I am not a journal writer but someone on the forum encouraged doing so and I am glad I did. On day 52 I wrote, “When I ooze I have not energy at all. It is so painful and I am cold and shiver. On the no ooze days I am so itchy and constantly shedding and do not sleep. The past two nights have been so frustrating as I cannot stop scratching until after 4 AM. No sleep meds help.” This is one of many maddening entries. I tried so many sleep aids and nothing helped. I finally accepted I would be awake until about dawn. For many months I would get my kids to school and come home and sleep until about time to pick them up. A few days later I wrote, “My body feels like I have zillions for tiny bugs crawling all over and I am in a briar patch. It hurts to move and even driving is painful as it hurts to turn my head. My face is red and blotchy and has sores all over.” I can remember being in the grocery store and not being able to turn my head and almost ran into a man with a cart and he was so ugly to me. I wanted to cry because I was doing the best I could and did not want to even be there. It has made me more aware that you never know what others are going on with someone else and to try and be more patient.
I could go on and on with entries from the journal but I think that shows a bit how bad it was.
My baths were my favorite place!!! It was the only place I felt good. But then I dreaded getting out because it was awful to get out. So I had to decide whether a bit of pleasure was worth the many minutes of pain. I also loved being under heavy covers and my mornings in bed were the best. I dreaded sun down because it meant the start of the crazy itch. I could not wear black because of the shed, but light colors were a pain because of the blood. So what the heck should I wear? I lived in yoga pants and changed my tops often and I hated seeing the blood stains. Just a few of the craziness of 2012!
Going through this I missed a lot of life. I look through my journal and see how sad I was missing my children’s activities, trips, birthdays, anniversaries, etc… But now I have to look back and be thankful that I am alive and able to enjoy those even more this year.
Everyone going through this is different, but for me I started turning a corner about 7 months in. Nowhere near perfect skin but started to get back to normal living. The sun had a lot to do with my healing. I tried it in March/April, 4-5 months in and flared. My skin was not ready. Tried again in June and still not ready. But by July it felt good and I sat in my driveway for a bit each day. I loved telling my husband I had to go out with my book and have healing time! J By November I started flaring again. No sun so I wonder if that is why or my body is just not ready. It was not a big flare but more like patches of eczema. It will be in a spot or two (inner elbows, breasts, underarms) and get red and itchy and flake and better. I wondered if back to eczema, but after listening to Dr. Rap I believe I am still in TSW. But I will take this over what I went through the past year and it is even way better than the worst of my “eczema”.
Everyone heals differently and find different things that help them through this so I do not want to say what I have gone through is what anyone else will. But I will say that it gets better. Slowly but surely. But it does!
You can see Jen's progress photos here.
Tuesday 15 January 2013
Downhill Again!
After a couple of good days last week, my skin has gone slightly downhill again. I can't believe how changeable TSW can be!
I thought the neck ooze had stopped, but the night before last, my neck and chest were soaking wet with sticky ooze. It was a very cold night and I did wonder if the weather had anything to do with it. Last night was better. My neck did not ooze in the night but the skin was very dry this morning and I have a lot of redness on my left cheek.
It is freezing cold outside and we had snow yesterday. I don't think these things help with the TSW. I am stuck inside with the heating on. Can my skin just get better now, please?
I thought the neck ooze had stopped, but the night before last, my neck and chest were soaking wet with sticky ooze. It was a very cold night and I did wonder if the weather had anything to do with it. Last night was better. My neck did not ooze in the night but the skin was very dry this morning and I have a lot of redness on my left cheek.
It is freezing cold outside and we had snow yesterday. I don't think these things help with the TSW. I am stuck inside with the heating on. Can my skin just get better now, please?
Monday 14 January 2013
Inspiring Story of a Brave Girl
I would like to draw your attention to a blogpost by "mommy-blogger" Loren about a little girl called Abigel.
You can read the post here.
The progress photos are nothing short of amazing. I have never seen such an extreme skin reaction to stopping steroids and the pictures just go to illustrate the harm that steroid creams can do to the skin. Everyone prescribing steroids for eczema should be forced to look at these shocking photos.
I'm so glad Abigel is getting better and inspired by her brave mom who stuck it out despite opposition from doctors who supposedly "knew better".
Having met another inspirational mom at our meet-up in London, I salute all the moms who fight for the best treatment for their children, despite pressure from dermatologists keen to push steroids at every opportunity. Thanks to these wise parents, their children have the hope of a future free from red skin!
You can read the post here.
The progress photos are nothing short of amazing. I have never seen such an extreme skin reaction to stopping steroids and the pictures just go to illustrate the harm that steroid creams can do to the skin. Everyone prescribing steroids for eczema should be forced to look at these shocking photos.
I'm so glad Abigel is getting better and inspired by her brave mom who stuck it out despite opposition from doctors who supposedly "knew better".
Having met another inspirational mom at our meet-up in London, I salute all the moms who fight for the best treatment for their children, despite pressure from dermatologists keen to push steroids at every opportunity. Thanks to these wise parents, their children have the hope of a future free from red skin!
Sunday 13 January 2013
UK ITSAN Meet-Up 12th January 2013
After almost 14 months off the steroid creams, I finally got to meet some other people going through the same thing! It was a fantastic experience.
Fellow Blogger Kelou organized a meet-up in London via the Facebook group and Itsan forums. Although many of us had been in contact over the Internet, this was a unique opportunity to meet face to face and discuss our experiences with TSW.
So, on a very cold January day, I dragged the hubby and kids to London to meet with other caregivers and red-skinners. We met in Festival Hall, on the South Bank, a nice central location, which was thankfully, easy to find, as I am not familiar with London at all.
Meeting up with the other red-skinners was an emotional and interesting experience. The first thing that struck me was how alike we all looked, sitting round the table with our glowing red faces! I'm not sure what the other customers in the cafe thought! It was clear to me now that there was no way that we had eczema, and it became quite obvious why doctor Rapaport calls people withdrawing from steroid creams "The Red People". Comparing skin (as you do), there were many similarities in the pattern of the red skin, with our worst affected areas being face, neck and hands. It was easy to have an instant affinity with these people; after all, they were ones of only a handful in the country who could actually relate to what I was going through.
We chatted about doctors and derms, the Itsan Forum, work, travel and lack of sunshine. It felt like I had known these people for years. My husband also really enjoyed it, as so far, his only experience with TSW has been listening to me moaning about it. It was good for him to have the opportunity to talk to other caregivers.
It was also really nice to be able to go out and not be judged. A lot of the time I really fret over my appearance, and if I think I look too bad, I won't leave the house. At the meet-up, we could leave our inhibitions about appearance behind us and just enjoy the craic.
I sincerely hope that this will be one of many future meetings. I noticed how many are joining the forum on Itsan.org every day and many from here in the UK. After my experience, I would encourage anyone going through steroid withdrawal to try and meet up with others in the same area. Meeting face to face is so much better than chatting online. I would also love to visit the USA and have a giant international meet-up someday!
After the meet-up, I had lots of time to explore London with the kiddies, even though we didn't scratch the surface!
Fellow Blogger Kelou organized a meet-up in London via the Facebook group and Itsan forums. Although many of us had been in contact over the Internet, this was a unique opportunity to meet face to face and discuss our experiences with TSW.
So, on a very cold January day, I dragged the hubby and kids to London to meet with other caregivers and red-skinners. We met in Festival Hall, on the South Bank, a nice central location, which was thankfully, easy to find, as I am not familiar with London at all.
Meeting up with the other red-skinners was an emotional and interesting experience. The first thing that struck me was how alike we all looked, sitting round the table with our glowing red faces! I'm not sure what the other customers in the cafe thought! It was clear to me now that there was no way that we had eczema, and it became quite obvious why doctor Rapaport calls people withdrawing from steroid creams "The Red People". Comparing skin (as you do), there were many similarities in the pattern of the red skin, with our worst affected areas being face, neck and hands. It was easy to have an instant affinity with these people; after all, they were ones of only a handful in the country who could actually relate to what I was going through.
We chatted about doctors and derms, the Itsan Forum, work, travel and lack of sunshine. It felt like I had known these people for years. My husband also really enjoyed it, as so far, his only experience with TSW has been listening to me moaning about it. It was good for him to have the opportunity to talk to other caregivers.
It was also really nice to be able to go out and not be judged. A lot of the time I really fret over my appearance, and if I think I look too bad, I won't leave the house. At the meet-up, we could leave our inhibitions about appearance behind us and just enjoy the craic.
I sincerely hope that this will be one of many future meetings. I noticed how many are joining the forum on Itsan.org every day and many from here in the UK. After my experience, I would encourage anyone going through steroid withdrawal to try and meet up with others in the same area. Meeting face to face is so much better than chatting online. I would also love to visit the USA and have a giant international meet-up someday!
After the meet-up, I had lots of time to explore London with the kiddies, even though we didn't scratch the surface!
Wednesday 9 January 2013
Past 100,000 Pageviews!
Thank you so much all my blog readers for pushing the pageviews past the 100,000 mark.
If the blog has helped even a tiny fraction of its readers, I am very happy.
I have been blogging for just over a year, so these kinds of numbers are mind boggling!
Here's to the next milestone...One MILLION pageviews!!!!!
If the blog has helped even a tiny fraction of its readers, I am very happy.
I have been blogging for just over a year, so these kinds of numbers are mind boggling!
Here's to the next milestone...One MILLION pageviews!!!!!
Monday 7 January 2013
Domeboro Saves the Day!
As you know from my last few posts, neck ooze has been a massive problem for me at night.
Luckily, I remembered that I had a box of Domeboro in my medicine box that I had completely forgotten about. I carefully made up a sachet with some water and poured a little solution into a cup. I put the rest in the fridge, where it will keep for a week. Domeboro, also known as aluminium acetate is an astringent medication used primarily for poison ivy in the US.
When I woke up in the night, I was sticky, so dabbed a little domeboro solution onto my neck with a cotton wool pad. It felt nice and cool and it actually dried up the ooze.
When I woke up this morning, amazingly my skin did not feel wet. it was actually dry to the touch. I will do the same thing tonight.
Another good thing about Domeboro is that it is antibacterial. When I used it at night, it prevented the horrible ooze odour that I am so used to.
The problem is that here in the UK, we cannot get Domeboro. It was available on Amazon for a time, but I checked today and the listing is no longer available. All I can advise if you live in the UK is to try and find a way to get some of this precious stuff. If you know anyone who is going to the US on holiday, or have friends in the US, get them to send you some sachets in the post.
Domeboro is fantastic stuff. I know Dr Rapaport uses it with his patients, but refers to it by its alternative name of Burrows solution.
Luckily, I remembered that I had a box of Domeboro in my medicine box that I had completely forgotten about. I carefully made up a sachet with some water and poured a little solution into a cup. I put the rest in the fridge, where it will keep for a week. Domeboro, also known as aluminium acetate is an astringent medication used primarily for poison ivy in the US.
When I woke up in the night, I was sticky, so dabbed a little domeboro solution onto my neck with a cotton wool pad. It felt nice and cool and it actually dried up the ooze.
When I woke up this morning, amazingly my skin did not feel wet. it was actually dry to the touch. I will do the same thing tonight.
Another good thing about Domeboro is that it is antibacterial. When I used it at night, it prevented the horrible ooze odour that I am so used to.
The problem is that here in the UK, we cannot get Domeboro. It was available on Amazon for a time, but I checked today and the listing is no longer available. All I can advise if you live in the UK is to try and find a way to get some of this precious stuff. If you know anyone who is going to the US on holiday, or have friends in the US, get them to send you some sachets in the post.
Domeboro is fantastic stuff. I know Dr Rapaport uses it with his patients, but refers to it by its alternative name of Burrows solution.
Sunday 6 January 2013
At Last...Some Sleep!
I actually managed to get some sleep last night! I guess it must have been the accumulation of so many night's broken sleep.
It didn't stop the oozing though. When I did wake up, my neck was soaking wet again.
It seems that my fingernails got busy in the night. I have gouged a great wedge out of the side of my face. I need to pop the socks back on my hands tonight.
I look kinda "piratey"with my big gash across my face "Oooh Arrrrrr!". My neck looks gross. The skin is still really raw and leathery.
Suffice to say, I have become a bit of a recluse with my bad skin. The hubby has just taken the kids out and I think he was a bit miffed that I wasn't joining them. I have no choice next week, as everyone is back at school and I have to go out, even if I look like a freak.
Liz, my fellow blogger, made an insightful comment on the Itsan forum this week. She said we should never doubt that our bodies know what they need to do to heal. All this flaking and oozing does have a purpose and the goal is healed skin. I have to let my body get on and do what it needs to do.
My mom and dad have been busy researching Nitric Oxide to see if there is a natural way to decrease the levels in the bloodstream that are causing me to ooze and get red. My mom read on Wikipedia that NO is removed by the kidneys, so I am trying to drink lots of water in the hope of flushing the NO out! I also read that iron absorbs NO and also that fatty foods decrease NO, but I don't think I will be gobbling lots of burgers in the hope of getting the levels down!
Just for a bit of fun, I thought I would share this Youtube video. I love a bit of Disney and the lyrics to the song sum up how I feel about TSW...
It didn't stop the oozing though. When I did wake up, my neck was soaking wet again.
It seems that my fingernails got busy in the night. I have gouged a great wedge out of the side of my face. I need to pop the socks back on my hands tonight.
Suffice to say, I have become a bit of a recluse with my bad skin. The hubby has just taken the kids out and I think he was a bit miffed that I wasn't joining them. I have no choice next week, as everyone is back at school and I have to go out, even if I look like a freak.
Liz, my fellow blogger, made an insightful comment on the Itsan forum this week. She said we should never doubt that our bodies know what they need to do to heal. All this flaking and oozing does have a purpose and the goal is healed skin. I have to let my body get on and do what it needs to do.
My mom and dad have been busy researching Nitric Oxide to see if there is a natural way to decrease the levels in the bloodstream that are causing me to ooze and get red. My mom read on Wikipedia that NO is removed by the kidneys, so I am trying to drink lots of water in the hope of flushing the NO out! I also read that iron absorbs NO and also that fatty foods decrease NO, but I don't think I will be gobbling lots of burgers in the hope of getting the levels down!
Just for a bit of fun, I thought I would share this Youtube video. I love a bit of Disney and the lyrics to the song sum up how I feel about TSW...
"I'll wear lipstick and rouge
And I won't be so huge
Why, I'll easily fit through that door
I'll exude savior-faire
I'll wear gowns! I'll have hair!
It's my prayer to be human again"
And I won't be so huge
Why, I'll easily fit through that door
I'll exude savior-faire
I'll wear gowns! I'll have hair!
It's my prayer to be human again"
Saturday 5 January 2013
Neck Flare
Another foul sleepless night with lots of oozing...sanity slowly ebbing away...!
My sleep patterns are totally messed up. I stopped up until midnight watching TV because I didn't feel tired, but then lay in bed until about 2:00 a.m before falling into a broken sleep. The oozing was particularly bad. I remember at one point having an itchy fit and scraping my nails slowly down the front of my neck, taking a large quantity of "skin putty" with it (a mixture of dead skin, moisturiser and ooze). I turned over many times and the strong ooze aroma, combined with the hemp cream I was using to create a...um...unique scent. Every time I woke I seemed to be covered in dead skin and ooze. When I finally got up for the day, the skin on my neck was very dry and sore, peeling to create a thin, plastic skin that looked artificial.
My cotton pillowcase feels like sackcloth. As soon as my face touches the pillow, the skin starts to leach fluid.
Moving my neck hurts and stings. I feel like I would love to smear steroid cream on it to get a bit of relief, but I know that would be suicide.The combination of itching, soreness, stinging and lack of sleep is driving me mad. I haven't really left the house in the last week, apart from a trip to get groceries.The mere thought of the cold winter air on my sore neck is enough to keep me holed up indoors.
Of course, a big part of my feeling lousy is the lack of sleep. The kids are back at school next week, which will mean early mornings again and hitting the ground running with lunchboxes and uniform, but at least when they are at school I can rest up and take it easy, hopefully aiding my healing.
My sleep patterns are totally messed up. I stopped up until midnight watching TV because I didn't feel tired, but then lay in bed until about 2:00 a.m before falling into a broken sleep. The oozing was particularly bad. I remember at one point having an itchy fit and scraping my nails slowly down the front of my neck, taking a large quantity of "skin putty" with it (a mixture of dead skin, moisturiser and ooze). I turned over many times and the strong ooze aroma, combined with the hemp cream I was using to create a...um...unique scent. Every time I woke I seemed to be covered in dead skin and ooze. When I finally got up for the day, the skin on my neck was very dry and sore, peeling to create a thin, plastic skin that looked artificial.
My cotton pillowcase feels like sackcloth. As soon as my face touches the pillow, the skin starts to leach fluid.
Moving my neck hurts and stings. I feel like I would love to smear steroid cream on it to get a bit of relief, but I know that would be suicide.The combination of itching, soreness, stinging and lack of sleep is driving me mad. I haven't really left the house in the last week, apart from a trip to get groceries.The mere thought of the cold winter air on my sore neck is enough to keep me holed up indoors.
Of course, a big part of my feeling lousy is the lack of sleep. The kids are back at school next week, which will mean early mornings again and hitting the ground running with lunchboxes and uniform, but at least when they are at school I can rest up and take it easy, hopefully aiding my healing.
Friday 4 January 2013
Extreme Tiredness
At the beginning of my TSW, I had a terrible time sleeping as my adrenals adjusted to the sudden drop in artificial cortisone. It took a few months to start getting a normal sleep pattern, but it did get back to normal.
I have no reason to think my adrenals are messed up anymore after 13 months off steroid creams, but my sleep patterns have been drastically affected by the constant neck ooze that I have mentioned on the blog over the last few weeks.
Imagine trying to sleep with your neck pouring with wet ooze. Not pleasant. Or easy.
Last night I decided to try and sleep on the settee, reasoning that if I could prop myself up and keep my neck exposed to the air, I could stop the ooze. Unfortunately, This unnatural position was not conducive to sleep and I ended up giving in and returning to bed. Sleeping was tough and I woke up in the early hours and returned downstairs to watch some TV and cream up my dried-out neck, which was peeling large flakes of dead skin.
I had a few hours alone before the stampede of kids waking up and coming downstairs. Trouble is, after feeding them all and hooking them up to the games console, I must have dropped off because the next thing I remember was the sound of them all eating lunch, which my husband had prepared for them. I was coiled up on the settee, my neck dripping ooze, but at least I felt somewhat refreshed. My body was craving sleep.
I am not sure when the ooze will stop. it seems quite relentless. The skin on my neck is now unnaturally soft because it is baby skin making its appearance too soon. My whole neck area looks red and raw. On a plus note, my face seems a bit better.
I feel like a human slug, rolling around in my own sticky slime.
I have no reason to think my adrenals are messed up anymore after 13 months off steroid creams, but my sleep patterns have been drastically affected by the constant neck ooze that I have mentioned on the blog over the last few weeks.
Imagine trying to sleep with your neck pouring with wet ooze. Not pleasant. Or easy.
Last night I decided to try and sleep on the settee, reasoning that if I could prop myself up and keep my neck exposed to the air, I could stop the ooze. Unfortunately, This unnatural position was not conducive to sleep and I ended up giving in and returning to bed. Sleeping was tough and I woke up in the early hours and returned downstairs to watch some TV and cream up my dried-out neck, which was peeling large flakes of dead skin.
I had a few hours alone before the stampede of kids waking up and coming downstairs. Trouble is, after feeding them all and hooking them up to the games console, I must have dropped off because the next thing I remember was the sound of them all eating lunch, which my husband had prepared for them. I was coiled up on the settee, my neck dripping ooze, but at least I felt somewhat refreshed. My body was craving sleep.
I am not sure when the ooze will stop. it seems quite relentless. The skin on my neck is now unnaturally soft because it is baby skin making its appearance too soon. My whole neck area looks red and raw. On a plus note, my face seems a bit better.
I feel like a human slug, rolling around in my own sticky slime.
Thursday 3 January 2013
Sleepless Nights
I dread going to bed.
When I go to bed, my neck, ears and chest ooze sticky, smelly fluid. Sleep is difficult.
This has now been going on for weeks. I usually have a fitful nights sleep and then go into a deep sleep at 5:00 a.m. It is hard to get comfy because my skin is so sticky.
My skin now feels raw. I can't believe how much skin I lose from my neck in the night. The new skin is pink and tight. It hurts to move.
On a plus note, one of the "skin veterans" on the Itsan Forum said that when the rash is localised in one area, it is the beginning of the end of the TSW rash. The fact that the rest of my body is good is a great sign.
When I go to bed, my neck, ears and chest ooze sticky, smelly fluid. Sleep is difficult.
This has now been going on for weeks. I usually have a fitful nights sleep and then go into a deep sleep at 5:00 a.m. It is hard to get comfy because my skin is so sticky.
My skin now feels raw. I can't believe how much skin I lose from my neck in the night. The new skin is pink and tight. It hurts to move.
On a plus note, one of the "skin veterans" on the Itsan Forum said that when the rash is localised in one area, it is the beginning of the end of the TSW rash. The fact that the rest of my body is good is a great sign.
Wednesday 2 January 2013
More Articles on Steroid Addiction
As promised, I am back with more articles on steroid addiction. It is a good idea to print them out and put them in a folder to take to any doctor's appointments, a little ammunition, as it were.
Anyway, I found a fabulous article that was written in August 2012. the link is here. It is a "must read" for anyone with steroid addicted skin.
Here are some of my favourite excepts from the article:
"Due to inappropriate and uncontrolled use of TC, an under reported and under stressed entity has evolved, namely TC addiction. Convincing arguments have been put to consider several erythema syndromes such as red face syndrome, post-peel erythema, red scrotal syndrome, vulvodynia, perianal atrophoderma, chronic actinic dermatitis, and chronic recalcitrant eczemas under the umbrella of steroid addiction.[54,55] Prolonged and continuous uses of TC on face lead to the development of dermatoses which has been named variously by different workers. In our scenario, it is called “topical corticosteroid-induced rosacea-like dermatitis” (TCIRD)[10] or “topical steroid-dependent face” (TSDF).[11] This has a distinct clinical presentation. Patients are mostly females who keep on using the steroidal cream till they get magical response and continue it later to prevent rebound flare till finally the lesions become persistent."
"It is the tolerance that skin develops to the vasoconstrictive action of TC. After repeated use of topical steroids, the capillaries in the skin do not constrict well, requiring higher dose or more frequent application of the steroid. The ability of the blood vessels to constrict returns four days after stopping therapy."
"We will quickly realize that despite the best efforts undertaken at our level, many of these problems will continue to persist because they were not contributed by us alone. To address them, interventions have to be multidimensional, involving political, educational and legal approaches.[9] Opportunity may have to be seized by the leadership of Indian Association of Dermatologists, Venereologists and Leprologists at every available forum. Political leaders and government officials should be repeatedly apprised of the prevailing situation and the need to curb this menace. Use of media for public education on topical steroid misuse is warranted, and the involvement of general practitioners, nurses. and pharmacists is needed. The legal approach should include the enforcement of the existing legislation related to the control of these drugs, so that TC are not sold without proper prescriptions. Pharmaceutical companies should be made to ensure proper labeling of TC products which should include inserts containing clear “finger tip unit” instruction, preferably with images and chart to show the numbers of unit required for specific areas of the body.[71] This will greatly help in optimal and safe use of TC. The legal aspect should also include measures aimed at strengthening the ethical responsibilities of pharmacists in correctly advising patients about the safety of medicines bought over the counter."
Maybe this article marks the beginning of the tide turning.
During my research I also found this page about Steroid-Induced Rosacea. It is full of useful quotes and links to articles by doctors and dermatologists. In short, it is a great resource for those of us who are suffering.
Knowledge is power and articles like these are our weapons.
Anyway, I found a fabulous article that was written in August 2012. the link is here. It is a "must read" for anyone with steroid addicted skin.
Here are some of my favourite excepts from the article:
"Due to inappropriate and uncontrolled use of TC, an under reported and under stressed entity has evolved, namely TC addiction. Convincing arguments have been put to consider several erythema syndromes such as red face syndrome, post-peel erythema, red scrotal syndrome, vulvodynia, perianal atrophoderma, chronic actinic dermatitis, and chronic recalcitrant eczemas under the umbrella of steroid addiction.[54,55] Prolonged and continuous uses of TC on face lead to the development of dermatoses which has been named variously by different workers. In our scenario, it is called “topical corticosteroid-induced rosacea-like dermatitis” (TCIRD)[10] or “topical steroid-dependent face” (TSDF).[11] This has a distinct clinical presentation. Patients are mostly females who keep on using the steroidal cream till they get magical response and continue it later to prevent rebound flare till finally the lesions become persistent."
"It is the tolerance that skin develops to the vasoconstrictive action of TC. After repeated use of topical steroids, the capillaries in the skin do not constrict well, requiring higher dose or more frequent application of the steroid. The ability of the blood vessels to constrict returns four days after stopping therapy."
"We will quickly realize that despite the best efforts undertaken at our level, many of these problems will continue to persist because they were not contributed by us alone. To address them, interventions have to be multidimensional, involving political, educational and legal approaches.[9] Opportunity may have to be seized by the leadership of Indian Association of Dermatologists, Venereologists and Leprologists at every available forum. Political leaders and government officials should be repeatedly apprised of the prevailing situation and the need to curb this menace. Use of media for public education on topical steroid misuse is warranted, and the involvement of general practitioners, nurses. and pharmacists is needed. The legal approach should include the enforcement of the existing legislation related to the control of these drugs, so that TC are not sold without proper prescriptions. Pharmaceutical companies should be made to ensure proper labeling of TC products which should include inserts containing clear “finger tip unit” instruction, preferably with images and chart to show the numbers of unit required for specific areas of the body.[71] This will greatly help in optimal and safe use of TC. The legal aspect should also include measures aimed at strengthening the ethical responsibilities of pharmacists in correctly advising patients about the safety of medicines bought over the counter."
Maybe this article marks the beginning of the tide turning.
During my research I also found this page about Steroid-Induced Rosacea. It is full of useful quotes and links to articles by doctors and dermatologists. In short, it is a great resource for those of us who are suffering.
Knowledge is power and articles like these are our weapons.
Tuesday 1 January 2013
The Inconvenient Truth About Steroid Creams
OK, so let's just imagine for a moment, that there were to be a big announcement on the news tonight. Imagine that the pharmaceutical companies finally held their hands up and admitted that steroid creams are addictive and cause serious long-term damage. Doctors and dermatologists around the world would all be informed and new guidelines put in place ensuring that steroid creams only be used for a period of five days to prevent addiction occurring. All OTC steroid creams are removed from sale.
"Hooray!" we may shout.
But what would be the implications? Would anything really change?
Moral Dilemma 1:
Well firstly, let's imagine the scenario of someone who suffers from eczema. They want a quick fix because they have a patch on their face and it looks unsightly. The doctor is at first reticent to prescribe a steroid, but succumbs to the patients demand, insisting that they follow the new 5 day guideline.
The patient uses the steroid cream but the eczema comes back after the 5 days. They return to the doctor, asking for a new prescription. The doctor refuses, because of the new guidelines. The patient now has a choice: Learn to live with the eczema and let it go away on its own, or get a steroid cream from a more disreputable source. Even now there are plenty of nasty people selling dangerous, illegal steroid creams. Would they see a sudden boom in trade? Obviously, the answer is to give the eczema a few weeks to go away on its own, but people are so obsessed with appearance today that many would opt for the more dangerous choice.
Moral Dilemma 2:
Now let us consider someone who has been using steroids for 20 years. My imaginary person is called John and he works full time in a public-facing role to support his family. He sees the announcement on the news and decides that he wants to quit steroid creams. The doctor warns him that quitting steroids will cause an intense rebound that will likely leave him incapacitated for the first 3 months, with total withdrawal taking as long as 3 years. John thinks that this will be difficult as he will not be able to get that much time off work, and he needs the money. What does the doctor do? Surely the doctor cannot force John into a painful withdrawal by withholding steroids.
Moral Dilemma 3:
What about the millions of people worldwide who regularly use steroid creams? Surely the doctors could not suddenly freeze all repeat prescriptions.Imagine the case of a dermatologist, who prescribes steroids to hundreds of his patients. Is he going to call them all in and refuse treatment, forcing them to go through withdrawal? How would a doctor, who has pledged to "do no harm" feel about prescribing a medication that he knows to be dangerous and addictive?
Legal Implications:
Admissions about the dangers of steroids would inevitably lead to lawsuits by disgruntled patients. Where does this leave doctors? Would graduates be reluctant to enter the medical profession? Who is more liable, Big Pharma or individual doctors?
Clearly, the truth about steroid creams is an inconvenient one. Steroid creams have been the mainstay of eczema treatment for over 50 years and are a billion dollar industry. If the truth about steroid creams was made public, the pharmaceutical companies know that they would be opening Pandora's Box.
I would love to read your thoughts on this debate. Does anyone have any ideas how these problems could be avoided? Please feel free to leave a comment below.
"Hooray!" we may shout.
But what would be the implications? Would anything really change?
Moral Dilemma 1:
Well firstly, let's imagine the scenario of someone who suffers from eczema. They want a quick fix because they have a patch on their face and it looks unsightly. The doctor is at first reticent to prescribe a steroid, but succumbs to the patients demand, insisting that they follow the new 5 day guideline.
The patient uses the steroid cream but the eczema comes back after the 5 days. They return to the doctor, asking for a new prescription. The doctor refuses, because of the new guidelines. The patient now has a choice: Learn to live with the eczema and let it go away on its own, or get a steroid cream from a more disreputable source. Even now there are plenty of nasty people selling dangerous, illegal steroid creams. Would they see a sudden boom in trade? Obviously, the answer is to give the eczema a few weeks to go away on its own, but people are so obsessed with appearance today that many would opt for the more dangerous choice.
Moral Dilemma 2:
Now let us consider someone who has been using steroids for 20 years. My imaginary person is called John and he works full time in a public-facing role to support his family. He sees the announcement on the news and decides that he wants to quit steroid creams. The doctor warns him that quitting steroids will cause an intense rebound that will likely leave him incapacitated for the first 3 months, with total withdrawal taking as long as 3 years. John thinks that this will be difficult as he will not be able to get that much time off work, and he needs the money. What does the doctor do? Surely the doctor cannot force John into a painful withdrawal by withholding steroids.
Moral Dilemma 3:
What about the millions of people worldwide who regularly use steroid creams? Surely the doctors could not suddenly freeze all repeat prescriptions.Imagine the case of a dermatologist, who prescribes steroids to hundreds of his patients. Is he going to call them all in and refuse treatment, forcing them to go through withdrawal? How would a doctor, who has pledged to "do no harm" feel about prescribing a medication that he knows to be dangerous and addictive?
Legal Implications:
Admissions about the dangers of steroids would inevitably lead to lawsuits by disgruntled patients. Where does this leave doctors? Would graduates be reluctant to enter the medical profession? Who is more liable, Big Pharma or individual doctors?
Clearly, the truth about steroid creams is an inconvenient one. Steroid creams have been the mainstay of eczema treatment for over 50 years and are a billion dollar industry. If the truth about steroid creams was made public, the pharmaceutical companies know that they would be opening Pandora's Box.
I would love to read your thoughts on this debate. Does anyone have any ideas how these problems could be avoided? Please feel free to leave a comment below.
Subscribe to:
Posts (Atom)