Quick update. G's skin continues to cycle through redness, burning, oozing, flaking, itching, pain. Insomnia is a big problem. She is still at work even though the GP offered to sign her off. She has used holiday rather than take sick days. It's part of her way of dealing which is to live as normally as possible for as long as possible. She is managing a social life which includes alcohol without any obvious detrimental effect. She laughs in public and cries in private.
The last GP she saw had not heard of TSW but was open to learn and asked her what support she needed. Sleep was her main issue so he gave her phenergan which helps her drop off though she is waking after a few hours. Long, long epsom baths are the best form of relief. Other can't live withouts: ice packs, tubular bandages and epaderm.
The good news is she has some smooth skin on her thighs, an indicator of what eventual healing might be like, her immune system is stronger - she is no longer getting constant colds and infections and her cat allergy has disappeared. There is a definite feeling that her internal environment is rebuilding itself; it's doing it intelligently, quickly and with great reilef.
Seeing the derm next Tuesday. Very curious as to his response.
Wednesday, 16 March 2016
Wednesday, 17 February 2016
TSW 1 month
Monthly update.
Yesterday Grace declared herself to be perky. She had been out for a meal with a friend and had realised that she could laugh and socialise even when she looked like crap and to be honest she didn't look that bad. Her face is flushed but it doesn't look nearly as bad as the infected eczema. Her ear swelling has gone down a bit though one ear is blocked. Her arms are 50/50 scab to skin. Her temperature control swings. She has had 2 days off work in the first month. One wobble when she thought about steroids. Mood is 6-7. Physical 3-4.
Treatments: Epaderm moisturiser
Dead sea salt and epsom baths
Ice packs
Has discovered the knee-buckling ecstasy of the scalding shower
Has gauze wraps to try and save some arm skin
Yesterday Grace declared herself to be perky. She had been out for a meal with a friend and had realised that she could laugh and socialise even when she looked like crap and to be honest she didn't look that bad. Her face is flushed but it doesn't look nearly as bad as the infected eczema. Her ear swelling has gone down a bit though one ear is blocked. Her arms are 50/50 scab to skin. Her temperature control swings. She has had 2 days off work in the first month. One wobble when she thought about steroids. Mood is 6-7. Physical 3-4.
Treatments: Epaderm moisturiser
Dead sea salt and epsom baths
Ice packs
Has discovered the knee-buckling ecstasy of the scalding shower
Has gauze wraps to try and save some arm skin
Friday, 5 February 2016
The thug unplugged: TSW early days
The last post ended with the dilemma, to withdraw from TS or not. I wasn't expecting Grace to decide so quickly, but since she had run out of TS and was already more than a week into withdrawal it made sense to carry on.
I think I'll be doing most of the posting because I'm a writer and that's how I deal with things whereas Grace deals by internalising. I do think it's important that so many people are documenting their journeys because it helps others who are desperately seeking information and it will provide data for researchers when someone gets round to it.
Day 16
Redness but not extreme, flaking, itching and insomnia. The sleeplessness isn't just down to itching it seems to be biochemical. Some pus-filled eruptions on body.
The worse thing about the early weeks seems to be the fear of what's to come. It's like seeing a forest fire coming towards you and knowing that you have to stand and burn. BUT there are new cells under the charring and new leaves will form and while the forest floor is smoking, a bird comes back and begins to sing.
It's shit that I can't walk in her shoes I can only walk with her and buy stuff. Today it's extra sheets, long sleeved cotton tops with mitts, jojoba oil and dead sea salts.
A lot of this will be down to mental strength, staying positive and using all the techniques out there for dealing with stress. More about this later.
I think I'll be doing most of the posting because I'm a writer and that's how I deal with things whereas Grace deals by internalising. I do think it's important that so many people are documenting their journeys because it helps others who are desperately seeking information and it will provide data for researchers when someone gets round to it.
Day 16
Redness but not extreme, flaking, itching and insomnia. The sleeplessness isn't just down to itching it seems to be biochemical. Some pus-filled eruptions on body.
The worse thing about the early weeks seems to be the fear of what's to come. It's like seeing a forest fire coming towards you and knowing that you have to stand and burn. BUT there are new cells under the charring and new leaves will form and while the forest floor is smoking, a bird comes back and begins to sing.
It's shit that I can't walk in her shoes I can only walk with her and buy stuff. Today it's extra sheets, long sleeved cotton tops with mitts, jojoba oil and dead sea salts.
A lot of this will be down to mental strength, staying positive and using all the techniques out there for dealing with stress. More about this later.
Sunday, 31 January 2016
Anti-inflammatories part 1: Hydrocortisone, the Thug
The Thug
Hydrocortisone is prescribed to most eczema sufferers. The box says 'Effective relief for inflammation, irritation and itching.' True enough. The leaflet inside warns of two possible side effects: allergic reactions and stretch marks. Mmm, not quite the whole story.
Hydrocortisone (cortisol) is a glucocorticoid. Raised levels lead to:
Weight gain and obesity. Cortisol provides a potent fat storage signal especially in the abdominal region. An enzyme in belly fat converts inactive cortisol back to active cortisol. Not good.
Immune system suppression: susceptibility to colds and infections, slow wound healing, food allergies, cancer and autoimmune diseases.
Gastrointestinal problems
Cardiovascular disease. Constricts blood vessels and raises blood pressure.
Fertility problems. Disrupted sex hormones.
Reduce collagen synthesis.
Calcium store depletion. Inhibits bone healing.
Fluid retention.
Insomnia and mood disorders.
Now the doctors will very likely tell you that the levels of hydrocortisone in the creams are low and safe for long term use, but a number of the conditions above lead to the production of yet more cortisol in a positive feedback loop. And is it just coincidence that after 20 + years of topical steroid use Grace has at least seven of the above? In particular she has become more susceptible to skin infections, and also experienced some autoimmune blistering.
And now the shocker: steroid addiction.
The creams that initially suppressed the problem can become the cause of the problem. Localised rashes become widespread. Steroid resistance develops. Higher strengths are used. The problem escalates till there is nowhere left to go but withdrawal.
Withdrawal is a protracted and highly intense process. Steroid rebound is often described as hellish. It lasts for months to years. The ITSAN site advocates complete withdrawal and gives advice and support to sufferers. Everyone using or prescribing steroids should take account of this, but much more research needs to be done. When there is insufficient data doctors can become invested in a particular position and it is difficult to see the true picture. Looking at the evidence of bloggers gives a mixed picture with some achieving remarkable healing and others struggling with frequent flares.
Grace ran out of TS two weeks ago and is already in the early stages of withdrawal. So what to do?
Questions
Is it possible to achieve a softer landing by tapering TS?
Does TS cause a significant increase in circulating cortisol? To what extent does it suppress adrenal function?
Hydrocortisone is prescribed to most eczema sufferers. The box says 'Effective relief for inflammation, irritation and itching.' True enough. The leaflet inside warns of two possible side effects: allergic reactions and stretch marks. Mmm, not quite the whole story.
Hydrocortisone (cortisol) is a glucocorticoid. Raised levels lead to:
Weight gain and obesity. Cortisol provides a potent fat storage signal especially in the abdominal region. An enzyme in belly fat converts inactive cortisol back to active cortisol. Not good.
Immune system suppression: susceptibility to colds and infections, slow wound healing, food allergies, cancer and autoimmune diseases.
Gastrointestinal problems
Cardiovascular disease. Constricts blood vessels and raises blood pressure.
Fertility problems. Disrupted sex hormones.
Reduce collagen synthesis.
Calcium store depletion. Inhibits bone healing.
Fluid retention.
Insomnia and mood disorders.
Now the doctors will very likely tell you that the levels of hydrocortisone in the creams are low and safe for long term use, but a number of the conditions above lead to the production of yet more cortisol in a positive feedback loop. And is it just coincidence that after 20 + years of topical steroid use Grace has at least seven of the above? In particular she has become more susceptible to skin infections, and also experienced some autoimmune blistering.
And now the shocker: steroid addiction.
The creams that initially suppressed the problem can become the cause of the problem. Localised rashes become widespread. Steroid resistance develops. Higher strengths are used. The problem escalates till there is nowhere left to go but withdrawal.
Withdrawal is a protracted and highly intense process. Steroid rebound is often described as hellish. It lasts for months to years. The ITSAN site advocates complete withdrawal and gives advice and support to sufferers. Everyone using or prescribing steroids should take account of this, but much more research needs to be done. When there is insufficient data doctors can become invested in a particular position and it is difficult to see the true picture. Looking at the evidence of bloggers gives a mixed picture with some achieving remarkable healing and others struggling with frequent flares.
Grace ran out of TS two weeks ago and is already in the early stages of withdrawal. So what to do?
Questions
Is it possible to achieve a softer landing by tapering TS?
Does TS cause a significant increase in circulating cortisol? To what extent does it suppress adrenal function?
Thursday, 14 January 2016
Hitchhikers - the good and the bad
Bacteria are thought to influence eczema in various ways. I want to address that with the first part of my new regime. I've just finished a course of antibiotics for infected eczema so I want to rebalance my bacteria. This is my starting point. Not good is it?
Probiotics
No artificial sweeteners
High fibre diet with fermented foods
No meat, no dairy
Here’s the reasoning:
The autoimmune bit
How does the immune system work?
The body’s immune system is designed to recognise and neutralise threats. Sometimes it gets confused; result: friendly fire. The body attacks itself.
We are not alone.
90% of the cells in our bodies are hitchhikers. Bacteria and parasites (our biome) crowd every space in the vehicle. All we do is drive. They pay for the lift by helping our vehicle to run smoothly. One of the most important things they do is to regulate our immune systems. It's better for us if we have a wide range of helpers.
Most of our bugs live in the gut. A recent report on Horizon showed that lower levels of Bifidobacteria are found in children with allergies. So it seems logical that bringing in the right kind of helpers can do no harm and may do good.
So how do we pick up the good guys and send the baddies rolling down the road?
Ways we mess up our biomes
Ways we mess up our biomes
Mistake 1
We tend to drive straight down the motorway, picking up a handful of similar types. Much better if we went along country lanes and off road and filled our car with many different types of hitchers. In other words, get around and get mucky; it’s good for you. We’re talking country living, organic gardening, wild food, mud, pets etc; the type of activities that expose you to good bacteria; not sending your kids to play near a sewage outlet.
Mistake 2
We routinely poison our helpers with antibiotics, often given for something that the body would deal with by itself given time. In other words, bear up, it’s only a cold.
Bug paranoia. It’s common sense not to chop raw chicken and salad with the same knife, but there’s no need to constantly wipe and spray every surface including yourself with anti-bacterials. If you’re immune-compromised or a surgeon go ahead and wipe.
Mistake 4
Using artificial sweeteners. Don’t. They change gut bacteria. It’s possible that this has an effect on the immune system. It’s known that they favour bacteria that make weight gain and diabetes more likely.
Mistake 5
High intake of refined food and low intake of fibre. There’s a 75% reduction in bacterial diversity on a low fibre diet.
Mistake 6
Eating factory farmed meat and dairy. Cramped conditions and stress lead to disease. The animals are routinely given antibiotics at low doses as a preventative. Result: resistant strains of bacteria and imbalances pass down the food chain to us.
Probiotics
There are many different brands available offering different levels and types of bacteria. We picked Bio-Kult advanced multi-strain because it contains 14 different types of bacteria (including bifidobacteria which can be low or absent in children with eczema). When choosing a probiotic read the reviews looking for evidence that the bacteria are surviving to populate the lower GI tract. When this course is finished I may try a brand containing more soil bacteria just to get as wide a range as possible.
Fermented foods
Fermented foods such as kimchi and yoghurt contain high levels of good bacteria. (I'm trying dairy-free and haven't got hold of any fermented veg yet).
High fibre diet
As above. Eat lots of fibre. It’s bug fodder.
Skin bacteria
Some research implicates the common skin bacteria staphylococcus aureus as the cause of eczema. It’s said to produce a biofilm which blocks sweat ducts activating the immune system to cause itching and irritation in people with a particular genetic profile.
Numbers and diversity of bacteria seem to play a role in eczema. Diversity falls during flare-ups. Levels of staphylococcus increase. There is insufficient research in this field but it would seem sensible to maintain a skin environment which supports diversity while discouraging the
overgrowth of staphylococcus.
Questions
Is it possible to take a differential approach to skin bacteria? Can we discourage staph aureus whilst encouraging diversity?
How are gut bacteria and skin bacteria linked?
Dermatologists, bacteriologists, please respond.
Dermatologists, bacteriologists, please respond.
Monday, 4 January 2016
Broken
Some time last year my daughter said to me, 'I'm broken.' When your child says that, no matter what their age, it's your job to fix them. This is a joint blog about our efforts to fix her.
Grace's eczema arrived with blue hyacinth soap. She was a meticulous baby and a big fan of soap. Maybe it was a coincidence but that soap seemed to trigger her first bout of itching and redness. After that it got worse. She couldn't sleep for the itching and scratched herself raw. The doctor prescribed steroid creams and emollients. We tried bran baths and exclusion diets. Nothing gave long term relief. So for over 20 years she has suffered.
People tend to think of eczema as a mild illness: a chronic itch, a rash, nothing too distressing. Severe eczema is extremely distressing. The skin is the largest organ in the body. It is what you present to the world. It is in a state of extreme irritation and reactivity. It weeps, it scabs, it bleeds, it gets infected, it hurts where your clothes touch, it is hyper-reactive to all kinds of environmental, chemical, emotional and internal stimuli. And then there's the way it looks. With steroid creams and antihistamines and make-up it is acceptable. During flare ups and particularly when it is infected it makes a mockery of the people who agonise over a pimple or a bad hair day.
The medical advice is designed to dampen symptoms. It does nothing to address causes. We're going after causes. The first things we're going to try are:
Diet - high in anti-inflammatories, low in wheat, dairy and sugar
Biome - rebalance the gut and skin biome
Environment - remove known and potential triggers: dust, moulds, chemicals
Emotional - reduce stress
Topical - gradually reduce steroids, use of natural products
We'll be scouring the internet for the latest research and linking to other eczema blogs. The journey starts here.
Grace's eczema arrived with blue hyacinth soap. She was a meticulous baby and a big fan of soap. Maybe it was a coincidence but that soap seemed to trigger her first bout of itching and redness. After that it got worse. She couldn't sleep for the itching and scratched herself raw. The doctor prescribed steroid creams and emollients. We tried bran baths and exclusion diets. Nothing gave long term relief. So for over 20 years she has suffered.
People tend to think of eczema as a mild illness: a chronic itch, a rash, nothing too distressing. Severe eczema is extremely distressing. The skin is the largest organ in the body. It is what you present to the world. It is in a state of extreme irritation and reactivity. It weeps, it scabs, it bleeds, it gets infected, it hurts where your clothes touch, it is hyper-reactive to all kinds of environmental, chemical, emotional and internal stimuli. And then there's the way it looks. With steroid creams and antihistamines and make-up it is acceptable. During flare ups and particularly when it is infected it makes a mockery of the people who agonise over a pimple or a bad hair day.
The medical advice is designed to dampen symptoms. It does nothing to address causes. We're going after causes. The first things we're going to try are:
Diet - high in anti-inflammatories, low in wheat, dairy and sugar
Biome - rebalance the gut and skin biome
Environment - remove known and potential triggers: dust, moulds, chemicals
Emotional - reduce stress
Topical - gradually reduce steroids, use of natural products
We'll be scouring the internet for the latest research and linking to other eczema blogs. The journey starts here.
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