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.
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