Treatment
As topical steroid withdrawal is your body recovering from a dependency on steroids, the only ‘cure’ currently is to come off steroids and go through the withdrawal process, ideally with the support of a medical professional.
TSW unfortunately cannot be avoided once the skin becomes dependent, however there are some things that can be done to help cope with symptoms.
The Scratch That community firmly believes that each healing story is unique and valid. We will support you no matter what treatment you decide for yourself. It is a completely personal choice and you should not feel pressured to go down any route if it makes you uncomfortable.
The following advice has been gathered from the collective experience of thousands of TSW sufferers. Since there is currently no clinical diagnosis for TSW, there are no specific treatments we can recommend.
As with all advice, please take the following with a pinch of salt. We are not medical professionals and will always encourage you to see a doctor if you are worried.
The most important thing to remember when going through TSW is to make sure you are as comfortable as possible. If you are following a treatment which isn’t working for you, be kind to yourself and listen to your skin. You know it better than anyone else.
Coming off steroids
We hope that in the future more research is conducted into this condition which could mean we find a way for patients to safely withdraw from steroids.
Please note
It can be tempting to immediately stop using your steroids because you may feel you have found ‘the answer’, however you must talk to your doctor before deciding to do this. Hopefully your doctor will support your decision to come off a medication you feel is no longer working for you. They may encourage you to start an alternative treatment such as an immunosupressant (Methotrexate and Cyclosporine and sometimes used in the UK). Some TSW sufferers have found that these made their TSW recovery more bearable.
Coping with the symptoms
The symptoms experienced throughout TSW can be pretty extreme and have a massive impact on your quality of life. We have a few tips a tricks to help you get through them:
The itch
The itch that comes with TSW is like no other. It has been described as ‘bone-deep’ and it is all-consuming. Don’t feel guilty for itching, it is impossible not to. Try your best to minimise damage with these tips:
Use a gentle tool – such as a wide toothed comb or wooden pegged hairbrush (keep them clean.) This can stop you breaking the skin barrier with your sharp fingernails.
Get acrylic nails – these help thicken your natural nails so that when you scratch, you don’t break the skin.
Antihistamines – these can help reduce the itch and can help you sleep better at night. Prescription antihistamines are stronger and might be necessary – talk to your doctor.
Have a bath – in the early stages of TSW, many find relief in a cool bath. Some recommend bath salts or oats in a sock for a soothing effect. Be sure to check your skin is responding well to this, as sometimes baths can irritate the skin further.
Distract yourself – sometimes impossible, we know! But keeping your hands busy really can help stop you itching subconsciously. Activities such as knitting or drawing keep your hands away from your skin and keep your mind on something else.
Lack of sleep
This is such a hard symptom to deal with, and unfortunately most TSW sufferers experience some level of insomnia at some point. Don’t worry, as you heal, it will go away. In the meantime, please see some of our tips!
Antihistamines – these can help with the incessant itch. Drowsy ones such as Atarax (prescription strength) can be taken before bed to help get you to sleep easier.
Snack before bed – when you go through TSW, your cortisol levels will be all over the place. Cortisol is a sleep modulator, and TSW sufferers often find they wake up in the middle of the night and can’t get back to sleep until the early hours. We recommend trying to eat something before you go to sleep like a banana or oats to help combat this.
- Sleep whenever you can – you skin heals when you sleep. Many TSW sufferers find themselves up all night, and can only sleep in the mornings. Be kind to yourself and sleep in the mornings if this is possible.
If you are itchy when you wake up it can be scary, especially when you are alone and have nothing to distract you. Keep your hands busy with your phone or e-reader (keep the backlights dim), anything to take your mind off things.
Dryness
There is no avoiding the flakes when you go through TSW, all the damaged and dead skin needs to come off! We don’t recommend exfoliating, as your skin is so damaged and sensitive, it really needs to be left alone to heal as much as possible. Don’t worry, this will pass. Make sure you are vacuuming and changing your sheets regularly.
- Moisturise – if you feel it is still helping you, do what you feel is right. Just keep an eye on how moisturiser is affecting your skin – TSW can make it hypersensitive to the point where your skin gets inflamed after you apply even your most trusted lotion.
Cut down on moisturiser. Many TSW sufferers find their skin calms down and is less inflamed if they slowly cut down on their moisturiser use. This is a really common treatment for super sensitive TSW skin and encourages the skin to produce its own oils, in time reducing dryness.
No Moisture Treatment – this is a popular treatment developed by Dr Kenji Sato in Japan specifically for TSW patients.
Oozing
When you are going through TSW, your skin is likely to start ‘oozing’ in patches. This is where the damaged skin cells leak serous fluid (lymphatic fluid). Doctors often confuse this for infected skin because it is hard to tell the difference.
- Keep it dry – these areas are best left to air dry. Do not pick at them or remove the crust, this is a protective layer that must be left alone for the skin to heal underneath.
Bandages – to help with ooze, many people recommend putting on bandages, as these help soak up the ooze and allow clothes to be worn. Wearing bandages is not ideal, as your skin is best left alone to breath and air dry, but bandages can help with the discomfort and are a personal choice.
Zinc cream – such as Sudocrem, can help dry up oozy areas.
Keep an eye out for infection – broken skin means there is a higher chance your skin can become infected. Keep a close eye on affected areas – look out for signs such as pus, excessive oozing, a fast spreading rash and redness. You must stay in close contact with your doctor at this time in case you need to take a course of antibiotics.
Inflammation
This is the most visible symptom of TSW. It is highly likely that if you come off steroids, your rash is going to spread. Many find it spreads like wildfire, to places they never even had eczema/ a skin complaint. This is normal, but we understand how terrifying it can be. The redness/ hyperpigmentation will eventually go away on its own as your skin gets used to reducing its own inflammation without synthetic steroids.
Don’t panic – the spreading rash is normal for TSW. Your doctor might refer to it as ‘erythroderma’ – this can be quite serious and it puts a lot of strain on your body. Make sure you are drinking plenty of water if this is the case.
- Do keep a close eye on your vitals – erythroderma (90% of skin surface inflamed) can be extremely dangerous. Make sure you regularly see a doctor who can check your blood pressure and vitals to make sure you are not seriously ill.
Cut down on moisturiser and baths – if you feel your skin gets more inflamed after moisturising and bathing, it may be that your skin has become so sensitive during withdrawal that it is reacting to the moisturiser. At this point, it might be a good time to start cutting down on moisturiser, as many find this helps reduce redness and speed up recovery.
Use ice packs – if your skin is burning hot, it can help to reduce the inflammation by applying ice packs. Make sure you wrap them in a towel and be careful not to apply them directly to the skin.
Feeling hot and cold
It is common for TSW sufferers to feel excessively hot or cold, despite that fact their skin is burning hot. This is because the adrenal gland is unable to function properly which can cause problems with regulating body temperature.
Check your temperature with a thermometer. Make sure you check your core temperature to determine whether or not you have a fever, as you might have an infection or fever. Checking in with your doctor regularly is highly recommended.
- Use ice packs – if your skin is feeling really hot and irritated it can really help to apply an ice pack. Make sure you don’t apply it directly to the skin – wrap it in a clean cloth.
- Wrap up warm – it goes without saying, but if you’re feeling chilly, wrap up in blankets and take care of yourself.
Swelling
(Also referred to as oedema) is a scary symptom that people suffering more severely from TSW can experience. Most commonly it occurs the legs or arms. This is due to inflammation and water retention. It is important you keep a close eye on this, but it does normally pass on its own.
Go see your doctor. Swelling can be a sign of something more serious going on – if you find part of your body has become swollen you must check in with your doctor.
Reduce your water intake – if you are experiencing swelling, many find that following the NMT technique can help reduce this symptom.
Keep the area raised – to help with drainage.
Eczema herpeticum
This is a potentially very dangerous viral infection that can occur in TSW patients. They are at risk because their skin barrier is excessively compromised. Keep an eye out for a new rash that spreads extremely quickly (in a matter of hours) – you must see a doctor as quickly as possible if this happens, as you will need to be put on antivirals.
Go see your doctor. If you think you have eczema herpeticum it is extremely important that you go see your doctor as soon as possible. EH can spread very fast and can quickly become a serious infection.
Should I moisturise?
There is much debate within the TSW community as to whether moisturising helps or hinders the healing process. One thing we know is that people who moisturise throughout the process heal, as do those who choose not to. Some believe you heal quicker if you don’t moisturise, but as with all theories this is subjective and there is not enough evidence yet for us to say for sure.
TSW can make your skin hyper-sensitive
There’s a high chance your skin will become very sensitive and reactive during the TSW process. This means it might start flaring even when you use products that worked before. It is important that you pay particular attention to your skin and what it may be reacting to. If you choose to continue moisturising, we recommend you try out a few different moisturisers to find which one works best for your skin.
Some people like lighter creams, such as Aveeno, or more natural moisturisers such as Balmonds, while others prefer much thicker ointments such as Aquafor. As with all treatments, one size does not fit all. Most TSW patients find emollients with fewer and more natural ingredients work best.
Moisturiser Withdrawal
Have you found that your skin gets red and itchy after you apply moisturiser? Many people find their skin can no longer tolerate it during withdrawal. Many find the best way to cope with this is to stop moisturising and leave their skin alone.
How does it work? Well the theory is that moisturiser creates a false humid environment for the skin, often necessary for dry atopic skin. However when it is used a lot, the skin can stop producing its own oils, or in other words, your skin becomes lazy and can no longer take care of itself.
The best way to withdraw is gradually, as your skin is likely to have some level of dependency on moisturisers and needs time to adjust and produce its own oils. Many find their skin becomes stronger and more resilient when it is no longer dependent on moisturiser.
NMT (No Moisture Treatment)
NMT (No Moisture Treatment) is a method developed specifically for TSW patients by Dr Sato in Japan.
Our friend and fellow TSW warrior Linette Roungchun details the treatment below.
Many thanks to Linette Roungchun for writing this article about NMT for us! Image © @linettero
How does NMT work?
Topical steroids mimic cortisol- a hormone produced in the adrenal glands. Our skin has been damaged due to the application of this synthetic stress hormone, so now we must train our skin to remember how to produce cortisol on its own. This is where NMT comes in. By following NMT, we give our adrenal glands the chance to once again produce their own cortisol.
NMT: A treatment designed specifically for TSW patients
There is no cure for TSW other than time itself. You’ve heard this before. Since there is very little research into TSW, it is not yet known which is the best way to treat the condition, and so Scratch That cannot recommend any in particular – you must make up your own mind. NMT is one treatment that has been designed specifically for TSW that some patients have found to be effective.
After monitoring his patients around the clock, NMT was founded by Dr. Kenji Sato at Hannan Chuo Hospital in Japan. Tokuko Kameda, one of Dr. Sato’s former patients who completely healed her TSW with NMT, found so much success in NMT that she took it upon herself to translate it to english so that the rest of the world could benefit.
Sato’s treatment was specifically designed for those of us who were diagnosed with Eczema, treated with TS (Topical Steroids), developed TSA (Topical Steroid Addiction), and who have stopped all steroid usage and are now going through TSW(Topical Steroid Withdrawal).
You will need to find a doctor to check your vitals and make sure that you are not experiencing any infections or any other health issues while doing NMT. If you get sick during NMT, stop NMT completely and consume as much fluids as you need to recover. Start up NMT again once you’re better.
If you are pregnant or seeking to treat a child, please consult your child’s doctor and the links below. Dr. Mitsuko Satou (pediatrics) and Dr. Kenji Sato wrote a book about kids and topical steroids. Hopefully the most pertinent information will be translated to English.
How to start NMT
NMT is a lifestyle change. You will need to restrict your water intake to 1L a day excluding food, with a total intake of around 2-2.5L for the average person. This is dependent on your weight and the severity of your TSW symptoms.
Exercise in order to get your heart rate up to 120bpm, for at least an hour a day. If you must, you can break up the workouts into smaller increments throughout the day. Many TSW find brisk walks and trampolining to be the most comfortable.
Sleep between the hours of 10pm-2am. These are the golden hours vital for skin repair.
- Cleanse only to prevent infection(do not over shower) and do not apply anything to the skin. It is recommended that you show 1-2 times a week in cold water for a few minutes.
The skin repairs itself when it is dry, not wet. Do not use moisturiser, makeup, bandages or wraps. Allow your skin to breathe.
Wearing tight clothing and covering up at night with heavy blankets is also considered moisturising.
Do not pick at your skin and do not wipe away the ooze. The ooze contains proteins needed in your skin’s healing process.
These are the main guidelines to follow. The rest can be found in the links below.
Remember to do your best to follow the NMT protocol, but most importantly, remember to be forgiving of yourself. Your mental and emotional health is of equal importance during this healing process, so don’t beat yourself up if you’re not able to follow these guidelines perfectly. Remember that with each day that passes, you are still healing.
Links
Tokuko’s Blog
This is the original blog written by Tokuko Kameda, a patient of Dr Kenji Sato. All the information on the blog has been approved by Dr. Kenji Sato and is backed up by scientific evidence. Tokuko has dedicated so much time to translating his advice and guiding patients through the NMT process. We are incredibly grateful for this information.
Please note: This blog offers advice for babies and children that we do not agree with (leaving them to scratch that night). Please proceed with caution and always consult your doctor.
Youtube Channels
Tokuko’s Room The video blog from Tokuko’s Room To Feel Uplifted
Eden Brown Eden documents her experiences with NMT in depth
Facebook Groups
NMT Education Group (Official site for NMT. Dr. Kenji Sato and Dr. Mitsuko Satou have approved this group. Comments not allowed. Strictly for learning.)
Support Group for NMT – TSW (for asking questions, commenting, support and discussions)
- The NMT Healed Club (Posts from those who have healed)