Tag Archives: treatments

Essential oils for managing eczema

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Eczema has been a great teacher. Over the past 8 or 9 years of dealing with my daughter’s eczema, I have learned many lessons though often reluctantly. Infact my whole family has. My daughter has learned what it means to be strong during very tough times and also how to deal with the many challenges she has faced in her young life. As a family we have learned the importance of showing our love for our daughter and being supportive; being there for her no matter what. Personally, eczema has taught me what patience is all about and that often there is a silver lining behind the grey cloud on the horizon. Of course, we have learned many other lessons as well, but these to my mind are the most important ones.

In the quest to learn more about this chronic condition which has been our constant companion for almost a decade now, I have learned a lot. I have been writing about it in my blog for almost three years now. I have written about the Functional Medicine treatment that my daughter is on currently. She is in fact responding very well to the treatment and we are in the process of lowering her immunossupressive medications.  But that topic is for my next blog post, today I am writing about another aspect of treating eczema.

Our experience with essential oils

I first came across essential oils in a meaningful and relevant manner in October last year. Before that mostly what I knew about essential oils were from my visits to the spa or salon and/or from fragranced beauty and other bath products. But even then I came to know much later that the fragrances in the usual beauty and bath products are actually artificial chemicals which try to imitate the natural fragrances of plants.

Last October, my daughter’s doctors were struggling to control her widespread staph infection due to the skin wounds from her constant scratching. Staph infection is a bacterial infection caused due to the presence of the bacteria Staphylococcus Aureus (or staph in short) which gets in through the cracks in the cuts and wounds on eczema prone skin. It is commonly present in those with healthy skins as well but is usually not able to create as many issues. The doctors had to give her two back to back week long dosages of antibiotics when the infection came back within 2 weeks of completing the first round of antibiotics. And even after that the infection was not completely under control and she was very itchy, inflamed and uncomfortable.

I was desperate enough to try bleach bath for her where I diluted household bleach with bath water and forced her to take a bath in it in an effort to get rid of the infection. It is a practice used to control severe staph infections in those with eczema. It was a a very painful time for her since the bleach bath used to sting her whole body. I felt like a really horrible person and mother for inflicting this kind of suffering on my daughter but my desperation forced me to try it out. Those were very trying times filled with pain and tears for all of us but thankfully they are behind us now. Now my daughter is able to enjoy both her bath and swimming lessons after many years. Essential oils came to our rescue and brought the infection under control and we have not looked back since.

 

(Further reading

https://nationaleczema.org/eczema/related-conditions/infections/staph/

https://www.sciencedaily.com/releases/2013/10/131030142414.htm)

Essential oils and Aromatherapy 

Aromatherapy

Unfortunately, in our zeal to embrace modern versions of medicine, quite a few of us have lost touch with other forms of treatment which can be equally effective. Luckily, I was thrust in the midst of the wonderful aromatic world of plant based therapy which have actually been used by man for millennia. But keep in mind that I am referring to the class of essential oils that are of therapeutic grade due to their 100% purity and which can be used for healing purposes. There are no bases, fillers or additives added. Most of the essential oils which are available in the market are not of therapeutic grade but are diluted and are good only for cosmetological needs and consumer products. I will be writing more about the brands and the companies that I use for managing eczema later in this post.

Essential oils are volatile liquids and are made mostly by a distillation process by extracting these from the leaves, flowers, seeds, roots and resins. The process of distillation separates the water and oil based compounds of the plant and makes the oil highly concentrated.  Infact it takes about 30 kgs of rose petals to make just about 15 ml of rose essential oil! This makes essential oils highly potent and effective for healing purposes. Essential oils have antibacterial, antifungal, antiseptic, antiparasitic, anti-inflammatory and highly therapeutic properties.  But like any other treatment, essential oils need to be treated with respect and with due knowledge of how to use them. Also, just like other treatments, aromatherapy works best in  combination with conventional treatments (if required for an existing condition), a good balanced and healthy diet, a daily stress management routine and regular excercise. 

(You can read more about them at

https://www.naha.org/explore-aromatherapy/about-aromatherapy/what-are-essential-oils

http://www.sciencedirect.com/science/article/pii/S2221169115001033)

All oils are not created equal

bunch of lavander

As I have mentioned earlier, there are different grades of essential oils. The ones I am referring to for managing eczema and other medical conditions are specifically therapeutic ones. The other ones might be much cheaper but will not have the healing properties that you need. In any case, since these oils are highly concentrated and very potent, only a few drops are needed at a time. They also have to be diluted at all times for topical applications even though there are a few exceptions.

The essential oils I use for managing staph infections and at the same time healing eczema prone skin are lavender, tea tree, geranium, clary sage, clove and oregano. I make a blend of oils by mixing 2 to 3 oils with a carrier oil (coconut oil) and use it to moisturise my daughter daily. Lavender and tea tree essential oils are the most important ones that I use every time while I add a third oil from the remaining list. Also keep in mind that clove and oregano are warming and highly potent oils and I use it mostly for fighting infections and not daily use. I do not use more than 5 to 6 drops of each in the blend and make up the rest with the remaining oils that I am using for that blend.

The dosage for the oils for a 3% topical (recommended) application is 30 drops of the essential oils (10 drops of each oil if using 3 essential oils) mixed with 30 ml of the carrier oil (coconut oil). In case of very young children and babies, you can start with a 1% 0r 2 % dilution which means about 5 to 6 drops of each oil ( or around 15 drops in all) mixed with 30 ml of the carrier oil. You also can use this concentration for maintenance  purposes once the skin infection has come under control.

A note of caution:  Avoid using essential oils on very young children (less than 2 years) and babies. If it is necessary to use for stubborn infection, use ones which are gentle on their delicate skin like lavender, tea tree and geranium and with maximum dilution. You can also buy a blend called Eczema Helper from the brand Plant Therapy made especially for children from 2 to 10 years of age. So far I have not been able to find any shopping site which ships this product to India apart from the Plant Therapy website itself and the link is given below-   

http://www.planttherapy.com/eczema-helper

The amounts of the essential oils should be increased or decreased in proportion to the carrier oil used. The blend should be kept in a glass bottle in a dark area well away from sunlight or any other source of light and heat. This blend can be applied whenever and wherever on the body moisturisation is required.

There are a few companies based in the US like Edens Garden, Plant Therapy, Young Living and Do Terra from where you can buy therapeutic grade essential oils . However, only Edens Garden Essential Oils and Plant Therapy Essential Oils are available as of now on Ebay India.  Sometimes, some of the other brands are available on Amazon India and Rediff shopping but are more expensive.  You can use the following link on Ebay India to buy the Edens Garden and Plant Therapy brand of essential oils–

Natural coconut oil
Also, equally important is the carrier oil used to dilute the essential oils. I have now been using cold pressed coconut oil to moisturise my daughter’s skin through all seasons successfully for more than a year now. Infact coconut oil itself has antimicrobial properties. I use the organic cold pressed coconut oil from Conscious Foods that is available at various retail stores including Godrej Nature’s basket, Foodhall (Mumbai) and online stores like Amazon India, naturalmantra.com, Foodesto.com and allthingsorganic.com amongst others. But you can use any cold pressed, unfragranced (preferably organic) coconut oil that is readily available in your area.

Stop and smell the roses

Essential oils have played a major role in managing my daughter’s skin infections and I am really happy to share it with you. I hope you find this article useful in incorporating essential oils into your eczema treatment routine.
A couple of other thoughts to leave you with.

Very often when we are pressed with stressful times in life, we forget that life is not just about tiding through tough times or “managing  situations”. It is also about enjoying time spent with family and friends, having fun, being creative and simply “doing nothing”. Infact in today’s world where we are hard pressed for time, “doing nothing” seems a sacrilege for most of us. The fact is, it is one of the most important gifts we can give ourselves. I have also had times when I felt that if I took some time out from managing my daughter’s eczema in some way or the other, I would not be a good parent. I did not feel “constructive” if I took out some time to take care of myself. But now I know that is simply not true! We all need a break from time to time to keep our sanity and remain productive.

I now use essential oils frequently for this purpose. Essential oils have an amazing array of benefits and uses. Diffusing a few drops of lavender (calming and sleep inducing) essential oils or other oils like ylang ylang, sandalwood, jasmine (to name a few) can calm you down.

As one wise person said, as you walk down the fairway of life, you must stop to smell the roses, for you get to play only one round. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The only impossible journey is the one you never begin….( we are on our way)

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Man on top as silhouette in mountain

A new year has begun and we are two months into it already! I know I have been missing in action lately and I am really sorry. Having said that, I am happy to say that there are lots of developments at my end. A few of these are to do with my daughter’s treatment and a few others are associated with related topics. So you see, I have a lot to share with you.

First I would like to mention a few things which are uppermost in my mind. I would like to begin my first post this year by expressing my gratitude for all that I have and enjoy. I am really grateful for all the precious and memorable moments spent together as a family. I am also thankful for the constant and untiring support provided by my daughter’s doctors and by our extended family. As a family dealing with a child with a chronic condition, we know only too well how difficult it becomes from time to time, how very exhausting. It is only with all the support that we get that we have managed to come this far.

While it is very difficult to witness the pain and suffering that my daughter has to endure on and off due to her severe eczema, we make sure that as a family we do not forget to have fun, to do the small and big things which we enjoy. Those of you who have been with us from the beginning will know that we have come a long way in the past few years.

Confirmation of a “leaky gut”

leaky_cycle-716x675

(Source: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/)

In my earlier posts I have shared with you that my daughter is currently on a treatment based on Functional Medicine principles. I have written in details about Functional Medicine in my earlier post (https://eczema-anindianperspective.com/2015/09/10/the-functional-medicine-and-gut-health-approach-to-managing-chronic-conditions-including-eczema/) and you can find out more about it for yourself using the links given in the post. My daughter has been on this treatment for a bit more than 3 months now and we have just done some tests for her to see if there are any improvements. But before I get to that in my next post, a bit more about these tests which confirmed that she had a gut health issue and determined her course of treatment.

The whole approach of this treatment is to heal the gut (or small intestine), wherein lies the cause of many autoimmune disorders and chronic conditions including eczema. These very specific and specialised tests which were done in London last year confirmed what I had been reading about and what I had suspected over the past year or so. Having a “leaky gut” meant that undigested food proteins and bacteria were passing on to the blood stream from inside the intestine and causing her immune system to overreact. This had caused systemic inflammation inside her body over a period of time and had led to her eczema eventually.

One of these tests assessed the gut barrier damage by measuring antibodies to barrier proteins called Occludin and Zonulin. The other factor was the presence of Lipopolysaccharides (LPS) which are toxins given off by some of the gut bacteria. If they are found in the blood, it usually means there is a breach in the protective gut lining. Both of these were present in her bloodstream in high amounts.  The other tests showed that her microbiome (the collection of symbiotic, commensal and pathogenic bacteria, fungi and viruses which reside in our gut) was also in poor shape and that her body was not able to digest and absorb the nutrients efficiently. All of these tests collectively reaffirmed the fact that she had a gut health issue leading to a “leaky gut” .

Ongoing Functional Medicine treatment

 

Gut Health Word Cloud On a White Background.

The primary objective was to start healing her gut using a combination of supplements and medical foods, lifestyle and dietary changes. Hopefully, over a period of time theese measures would reduce the chronic inflammation in her system and bring her eczema under control without the use of harsh medications. I had already made the necessary changes as far as her diet (https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/) and lifestyle (https://eczema-anindianperspective.com/2015/07/23/green-power-greener-alternatives-for-laundry-and-cleaning-products-especially-for-eczema-and-sensitive-skin-2/) were concerned.

She has been prescribed supplements to repair and reinoculate her gut and strengthen her immune system. These include supplements like L- Glutamine (to repair intestinal lining), probiotics (we use a brand called Culturelle as well as Bifido Complex by Metagenics), Omega 3 (Nordic Naturals), Metagenics GI Sustain (a medical food containing vitamins, prebiotics, minerals). It has been a bit more than 3 months since we started her on this treatment which continues along with her regular immunosuppressive medication (Methotrexate). Her test results will come in anytime now and will show if there is any improvement since we started her on these supplements in October. I will share the results with you as soon as I can.

The silver lining in all of this is the fact that for the first time since the doctors put her on harsh immunosuppressive medications since 2012 (Azathioprine, Cyclosporine, Methotrexate at various points in time), this is the first time that I have been able to reduce her dosage from the optimal level. She has been doing fine on this dosage for the past month or so. It is a small but important step in the right direction and it really counts.

(For further reading: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/

How to Tend to Your Inner Garden – Why Your Gut Flora May be Making You Sick

http://www.mindbodygreen.com/0-10754/the-6-best-ways-to-heal-your-gut-restore-your-health.html)

Difficult roads often lead to beautiful destinations

Famous Redwood Highway

It is so true! This is something I have come to know the hard way. Life changed for us completely about 4 years back when our daughter’s eczema turned into something so much more severe and complicated in the form of a chronic condition. I had to let go of my past way of living as a full time working mom and commit myself full time to taking care of the family and my daughter’s special needs. Of course, the whole family has had to make changes regarding our social commitments, travel, diet and other aspects of life. It has not been an easy road for any of us and indeed our daughter has faced the brunt of it. But even as I wish my daughter never had to deal with eczema at all, it has shaped us all in ways which have made us stronger, kinder and more resilient than ever before.

I have been sharing my research and knowledge about eczema and its related topics with you through my blog.  I also realised that in order to make all the changes necessary to manage my daughter’s eczema, I had to first make sure that she understood her condition in an age appropriate manner. I did this with the help of information and facts on eczema, countless discussion and counselling, story books and other means. This has helped her to not only accept the physical aspects of dealing with eczema (like moisturising and bathing routine, diet etc) but also deal with the far more difficult emotional aspects of living with this chronic condition.

My daughter’s dermatologist Dr Amrita Talwar has been instrumental in encouraging me to share our story and subsequently to write a book about eczema specifically for children. This has led me to write a book for children on this topic and is the first major development at my end. Both Dr Talwar and I realised that while there are many many resources for parents and adults who are looking for information on eczema and ways to deal with them, there is practically nothing for the children who are actually suffering from eczema. Hence the decision to write a book based on the experiences of a young girl dealing with her severe eczema. This book should help other children understand, accept and ultimately deal with their condition in a better manner. This book is scheduled to be published in the month of April and I will keep you posted on the same.

The other development at my end is that I will begin a new chapter in my life in the form of health counselling as a certified Health Coach. Over the past few years I have gathered a lot of knowledge about eczema and related topics pertaining to lifestyle ( clothing, detergents, moisturisers etc), foods  ( gluten free, nut free, dairy free) and their availability in India, essential oils, stress management through mindfulness meditation etc. I  would like to put all of these practical knowledge of dealing and living with a chronic condition as a caregiver to good use and share with others who are struggling with similar issues.  I decided to augment my experience and practical knowledge with a course from the esteemed Dr Sears Wellness Institute in the US to become a certified Health Coach. As many of you may know already, I had also started a Support Group for parents whose children suffer from eczema in Mumbai. I had taken a break due to my other commitments last year but I am planning to restart the Support Group meetings as well. My counselling work is also likely to begin in the next couple of months.

I can’t change the direction of the wind, but I can adjust the sails to always reach my destination

sailboat and sunset

This is exactly what I have had to do  in order to cope in the past few years as the primary caregiver for my daughter. This is what I teach her as well. While we cannot always change or control all the tough situations that life brings us, we can choose how we react to them.

In this post I have decided to focus only on the few baby steps that we have taken forward. We need to celebrate every little bit of achievement even if it may not look like much at all at that time. We have realised the hard way that dealing and living with a chronic condition is more like a marathon than a sprint and every step forward is a reason to rejoice. I hope we have more such reasons to celebrate in 2016!

 

A summary of some of the regular reatments for eczema

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Eczema - Printed Diagnosis on Blue Background and Medical Composition - Stethoscope, Pills and Syringe. Medical Concept. Blurred Image.

I have been writing about our experiences with eczema (or more specifically Atopic Dermatitis) for almost 2 years now. I have written about the various treatments we have tried in various posts but I realised that I have not really written in details and in a comprehensive manner about the first, second line and third line treatments that are usually used to treat eczema.

(Please note: I will refer to Atopic Dermatitis as eczema in my post from here on to simplify matters)

In this post I have written about the regular medical treatment that is used once the moisturisers alone are not able to control the inflammation. Moisturisers are an essential part of the treatment for eczema and works very well in mild forms but may not be sufficient to bring the eczema under control once the skin becomes red and inflamed in moderate to severe eczema. I have myself been confused at times with the myriad topical, steroidal and non steroidal creams that are prescribed by the doctors at various points in time. Then there are also the oral steroid medications and different immunosuppressants and phototherapy treatment that we have used to control flare ups. I believe it would help a lot of parents (and those adults suffering from eczema) if they had some idea about the basics of the different types of treatments and medications that they may be using on their child or even on themselves. It would definitely help in controlling and reducing the side effects that some of these strong medications can have on a person if not used properly.

Topical steroids

Steroid cream.

Topical corticosteroids are prescribed by the doctor/dermatologist when the skin becomes red and inflamed and the eczema does not clear up in spite of maintaining a healthy and regular bathing and moisturising routine. The topical corticosteroids range from very mild to very potent and you should be very careful in following the doctor’s instructions in using the same for your child both in terms of quantity and duration. This is especially true for young children and babies. In any case, the topical corticosteroids are prescribed only when the risks from eczema far outweigh the risks from the side effects of using these medicines. When a child suffering from eczema is unable to sleep at night due to incessant itching and thus starts affecting daily life at school and home, there is a risk of infection due to the cuts and inflamed skin, it is wise to use steroid creams/ointments as per the doctor’s advice till the time the rashes have gone.

Some important points to remember while using these medications-

  • One should start using the lowest potency steroid and only step up if required
  • Topical steroids are most effective if applied immediately after a bath but should only be applied on affected areas and not as a moisturiser
  • One should follow the doctor’s advice on the frequency of application (usually twice a day is more than enough on severely inflamed skin) and should start tapering off as instructed instead of stopping abruptly
  • Step up and the step down method (in terms of potency and frequency of steroid) needs to be maintained while using the topical steroids to keep the risks of side effects of these medications as low as possible
  • One should avoid using these medications on the face and other sensitive areas and this is all the more true for children who have very sensitive and delicate skin

Given below are the various common (but certainly not exhaustive) topical corticosteroid creams/ointments that are available in India (and ones I am most familiar with) and their potency

  • Low potency– Hydrocortisone creams (1%) are available as an OTC (over the counter) medicine in various forms like cream, ointment and lotions. This is the least potent amongst all the topical steroids but still should be used with caution especially for a child. This is especially true since this is easily available and one can unknowingly use this as a moisturiser without realising that it is still a steroid cream/ointment
  • Mild to mid potency– Steroidal creams/ointments like Desonide, Mometasone fuorate and Fluticasone propionate are available at the lower to mid end of the potency spectrum. These are brands like Desowen, Momate/Elocon and Flutivate brands in India for the respective steroidal creams/ointments respectively. The doctors will prescribe a particular steroidal cream based on the level of inflammation and rashes
  • Potent to highly potent– Steroidal creams like Betamethasone dipropionate and Halobetasol propionate are at the potent end of the corticosteroidal creams/ointment. In India we have brands like Fucibet (which also includes fucidic acid which is an antibacterial medication) and Halovate which include these steroids respectively.

You should also know there is an overlap in these topical medications since they are usually available in both cream and ointment forms and the potency for the same dosage will differ based on the form. The cream form has roughly half water and half oil, they spread easily, are well absorbed and usually wash off with water. Ointments on the other had are about 80% oil and 20% water and are thus “occlusive” which means they trap moisture and help in better absorption of the main component. Being occlusive, an ointment will allow the medication to get absorbed much more completely than a cream and hence are more potent at the same dosage as a cream.  

https://www.psoriasis.org/sublearn03_mild_potency

Application and side effects

Topical corticosteroids should be used in a step up manner in terms of increasing potency starting from a low potency and only moving up if required. Usually the doctor will prescribe the milder ones like desonide cream (brand name- Desowen) and only graduate to a stronger medication like Fucibet if required later on. Similarly, once the rashes have been brought under control, one should use the step down method both in terms of potency as well as frequency as per the doctor’s instructions.

As mentioned earlier, these medications should only be applied on affected areas and not as a  moisturiser. However, sometimes the rashes may be quite widespread all over the body. In that case, the doctor may prescribe a 1:4 ratio of a mild potency steroid like desowen to an emollient like cetraban which is then mixed thoroughly and applied all over the affected areas.

Side effects from these steroidal creams are varied and depends on the age of the person, the frequency of application, the potency of the drug amongst other factors. The thinning of the skin or skin atrophy is one such side effect which can take place if potent to highly potent steroidal creams are applied too frequently or without any break. However, one can avoid this and other side effects by following the doctor’s instructions for using this treatment and thus using this treatment as and when required, in the required quantity and for an appropriate duration. The other thing to keep in mind that in case of excessive scratching due constant itchiness in case of under medication, the skin tends to become thick and discoloured. Thus the treatment needs to be carried out in a timely manner under the supervision of a doctor and the instructions should be properly followed to minimise the side effects.

(Further reading-http://www.eczema.org/corticosteroids)

Calcineurin inhibitors

Another type of topical treatment available for eczema is the group of medications known as Calcineurin inhibitors. These are non-steroidal immunomodulators and are of 2 types- pimecrolimus 1% (Pacroma and Elidel) and tacrolimus 0.3% (Protopic). These topical medications work by suppressing the immune system and are usually prescribed to children over 2 years of age and adults and are recommended for use as a second line treatment for eczema.pacroma-cream

As with steroidal medications, these type of immunomodulators should also be applied only when prescribed by the doctor and for the recommended duration of time. Even though it does not have the side effects like thinning of the skin which is associated with steroidal treatments, one still has to be cautious while using these medications since they are relatively new medications and not much is known about their long term usage. There is a possible risk of skin cancer only in the long run after prolonged usage but it is still advisable to apply these creams at night to avoid sunlight exposure. These medications are also prescribed for eczema on the face (unlike topical steroids) and are prescribed for moderate to severe eczema only when the combination of topical steroids and emollients have not been successful.

(Further reading- http://www.ncbi.nlm.nih.gov/books/NBK45568/

http://www.ncbi.nlm.nih.gov/pubmed/14693489)

Phototherapy or Narrow band UVB

Another treatment that is prescribed once the topical treatments have not really worked for a person in controlling the eczema is phototherapy. It is used as a safer alternative to avoid using  the third line treatments of  the powerful immunosuppressive medications like azathioprine, methotrexate and cyclosporine.

In this treatment light or a particular narrow band of Ultraviolet rays are used to treat the eczema which is beneficial for skin diseases. It can be used both for localised as well as general areas of the skin covering the entire body. This treatment works effectively for some people but not for everyone and usually takes about 1 to 2 months to show the desire results. If this treatment is effective then it can effectively put the eczema in remission for a while at least. It may also minimise the usage of topical steroids and there its side effects.

Phototherapy is carried out in a special booth filled with UV rays for general treatment of eczema all over the body and hand-held devices for treatment of specific areas like hands, ankles etc. Nowadays, a high intensity phototherapy treatment is available in the form of a laser called Excimer. It is much more powerful than the regular phototherapy and emits Ultraviolet rays of a particular frequency which is used to treat different skin conditions like eczema, psoriasis etc. It is given in the form of a hand-held gadget and takes much less time than a regular phototherapy due to the high intensity of the rays and is more useful for treatment for localised areas of the body. However, one needs to be careful in protecting the eyes when undergoing this treatment. The risks associated with prolonged treatment are skin burns, increased ageing and increased risk of skin cancer. Like any other such treatment this has to be carried out under the supervision of a medical professional and all the instructions need to be followed carefully. (I have written about our experience with phototherapy in my blog post https://eczema-anindianperspective.com/2013/10/17/when-the-going-gets-tough-part-1/).

(This treatment is currently offered in the Comprehensive Skin Care Clinic run by senior pediatric dermatologist Dr Manish Shah in South Mumbai and the website is http://www.cscc.co.in/)

Oral Steroids

Steroids

The third line of treatment for eczema is the use of systemic medications like oral steroids. Prednisone is one of the most commonly used oral steroids given in cases of severe eczema where an immediate result is required and is given under strict supervision of the doctor. It is given as a daily dose starting with a high dosage and then is slowly tapered down once the eczema is under control. Oral steroids work by suppressing the immune system and helps in controlling the overactive immune system in the case of a person suffering from eczema. But this also makes it possible for the person to catch infections easily due to a weakened immune system and hence has to be monitored at all times. Also, in the case of a child, oral steroids may slow down growth and development and hence again one needs to be very careful.

There are other side effects as well which can be minimised by following instructions carefully and keeping a lookout for any symptoms which may arise on taking this medication. This is also done by carrying regular blood tests to determine adverse side effects if any. Due to the various side effects of this medication and its quick action, oral steroids are usually prescribed for short periods of time when results are needed fast. Bottomline, like any strong medications, one needs to take this under strict supervision and follow the doctor’s instructions about dosages  and how to start and stop taking this medication.

(Further reading: http://www.ncbi.nlm.nih.gov/books/NBK260241/)

Immunosuppressive medications

various tablets pills in bottle

The other third line of systemic treatments include the immunosuppressive medications like azathioprine, cyclosporine and methotrexate. These are all very powerful medications and are given only when all other options have failed to yield the desired results. All of these medications work by suppressing the immune system and hence bring the eczema under control. But once again, due to the various side effects these medications have to be given under strict supervision of the doctor prescribing this and by following all the instructions carefully. Since eczema is a chronic condition and these medications may be required to be given for long periods of time, regular testing is required to ensure that there are no side effects.

Azathioprine

Azathioprine works by tweaking the growth of certain white blood cells which contribute to the inflammation associated with eczema and thus suppresses the immune system. It takes a while longer to show results than cyclosporine and may not suitable for acute flare ups.The main side effect of azathioprine is bone marrow suppression and that is why a specific test is carried out before prescribing this medication which is called the TPMT enzyme test. This test determines the suitability of the person by determining the ease by which the person is able to break down azathioprine in the normal way. However regular testing would be required to keep a track of any adverse effect on the immune system. This medication is taken orally in the form of tablets and on a daily basis in the prescribed dosage.

We had a traumatic experience with this medication which was prescribed by a leading pediatric dermatologist in London for our then 7 year old daughter. In her case, even though she had a normal TPMT result, her body reacted disastrously to this medication and she suffered from bone marrow suppression and had to fight for her life. This was a one in a million kind of event and has never happened before to someone with normal TPMT levels. I have written about our experience in my post in 2013  and you can read about it at https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/.

Cyclosporine

Cyclosporine is another systemic immunosuppressant used to bring severe eczema under control and works by specifically blocking an important pathway in the immune system, and has different side effects than steroids. It is prescribed in low doses for eczema under strict supervision and once the eczema is under control, the medication is tapered off. One of the main risks associated with this medication is damage to the kidney especially with increased dosage and duration of medication and hence regular tests would be required to monitor the kidney activity. This medication has to be taken orally on a daily basis as per the prescribed dosage.

(I have written more about our experience of dealing with cyclosporine and azathioprine medications in my blog post where I have compared both at https://eczema-anindianperspective.com/2014/02/10/azathioprine-and-cyclopsorin-an-overview-of-two-immunosuppressive-medicines-used-to-control-my-daughters-eczema-from-a-parents-point-of-view/).

Methotrexate

Methotrexate is another systemic immunosuppressant which is used mainly in treatment for psoriasis and different types of arthritis. It is also given in low doses in cases of severe eczema and usually takes longer to work than cyclosporine. It has anti inflammatory properties and works by altering the body’s use of folic acid (a vitamin) which is needed for cell growth. Thus a folic acid supplement is a must on a daily basis for those taking this medication. This medication is taken once a week in the form of tablets. This dosage may also be split up into 2 doses taken within 24 hours to minimise any nausea that may occur. One of the main possible side effects of this medication is again adverse effects on the immune system especially on the white blood cells (which fight infection) and platelets (which help stop bleeding). Thus regular blood tests are required to keep a look out for any adverse side effects.

(Further reading- http://rheuminfo.com/medications/methotrexate/methotrexate-detailed-information)

Sometimes the hardest thing and the right thing are the same

Sometimes we don’t have a choice as far as giving strong medications to our child is concerned when the child is suffering from a severe chronic condition which adversely affects daily living. Of course we would prefer to find some alternative which is much safer and without any of the side effects that I have mentioned above. As of now we have not managed to bring our daughter’s eczema into remission and she needs constant medication in order to live a relatively normal life.

Things can also go horribly wrong like it did in our case in spite the very best of intentions. We have been very lucky and have learned to take this in our stride and be more vigilant in the future since our daughter still requires immunosuppressants to keep her severe eczema under control. This has not stopped us from looking for other options and neither should you. As one wise person had said, it does not matter how slowly you go as long as you do not stop.

Azathioprine and Cyclosporin ( an overview of two immunosuppressive medicines used to control my daughter’s eczema) from a parent’s point of view

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I seem to be putting up a post quite infrequently off late but I hope to change that soon. In my defence I can only say that I have been enjoying myself too much and was quite tied up with my brother’s wedding late last month. It went off very smoothly and now the happy couple are spending quality time in Thailand.

Those of you who follow my blog and have read my earlier posts know what happened with my daughter due to the drug Azathioprine which was given to control her otherwise very severe eczema ( I have covered this in my post ….the tough get going Part II). I am pretty sure that other parents like me who have had to either put their child on this kind of immunosuppressive drug or have had to contemplate giving it go through the kind of jitters that I do from time to time.

I am very well aware about the reason and benefit of giving this medicine to my child without which leading a normal life for her would be almost impossible given the severity of her eczema at this point in time. But it does not stop me from thinking of all the possible side effects in the process of controlling her eczema especially given the life threatening consequences of giving her azathioprine last year. It is like having Hobson’s choice in this matter which means there is really no choice at all. I am sharing our experience with you in the hope that it may help you decide what is the best line of treatment for your child with the doctor’s support and bring a smile to your child’s face by making living with severe eczema bearable.

Hobson’s choice

IMG_1262By the time we gave Aiyana azathioprine last summer, we had exhausted all the other possibilities of various triggers like allergens, environmental causes like hot or cold temperatures, irritants like detergents amongst others. We also had an intensive moisturizing and bathing regimen to control her eczema but without much success. We had tried out all levels of topical cortisteroids and immunomdulators, wet wrapping therapies, phototherapy and oral steroids all of which are usually enough to manage mild-to-moderate atopic dermatitis. Although some mild cases of atopic dermatitis can be managed with emollients (creams, lotions and ointments) alone, there are some people who might require treatment with either topical corticosteroids or immunomodulators. When all these medicines and other measures to minimize environmental influences (elimination of allergens, dust mites, irritants like detergents and heat, perspiration and dry climates) fail, systemic options like oral steroids (prednisolone) and non-steroidal immunosuppressant agent such as azathioprine, methotrexate, ciclosporin or mycophenolate are often considered.

Azathioprine and cyclosporin- 2 different types of immunosppressant drugs

In Aiyana’s case azathioprine was prescribed by a leading pediatric dermatologist in London after doing a battery of tests including the enzyme test called TPMT (thiopurine methyltransferase). This enzyme plays a critical role in the chemical breakdown of azathioprine that is, in the way the body gets rid of this drug.  If a person is TPMT deficient, the effect of a particular dose of azathioprine will be exaggerated, and it could therefore become toxic to the bone marrow and hence the TPMT test is mandatory before giving this drug. Azathioprine has been in existence since the 1960s and was initially developed to prevent organ rejection and has been used for many years in the treatment of severe eczema. It is an immunosuppresant drug that is also known as antimetabolite. It hinders the growth of lymphocytes (a type of white blood cell) which are involved in inflammation associated with eczema. Azathioprine is given by mouth, usually once daily, and most often in the form of tablets of 25mg and 50mg.  It is also available in the liquid and allows more precise dosing for young children.

Cyclopsorin is another type of immunosuppressant drug which was also originally used to prevent organ rejection in transplant patients. It is in fact derived from a type of fungus. Even though the cause of Atopic dermatitis (eczema) is not completely understood and there is no cure as of now, what is known that immunological reactions occur in the skin of people with eczema and these are controlled by white blood cells (lymphocytes) that enter the skin from the blood. Cyclosporin decreases the production of chemical messengers which “switch on” these lymphocytes and thus dampen down strong allergic and immune reactions. It is available as capsules containing 10 mg, 25 mg, 50 mg and 100 mg of cyclosporin, however for children the liquid form is easier to give as a dose (one formulation is called Neoral®).

Side effects

Azathioprine has a very serious side effect and that is  ‘bone marrow suppression’, or ‘myelosuppression’.  The bone marrow is the site of production of the most important types of cell in the blood: the red cells (RBCs), the white cells (WBCs including neutrophils and lymphocytes) and platelets (important for blood clotting). White blood cells are critical in the body’s defence against infection, and if their numbers fall drastically (as did happen with my daughter),there will be a risk of potentially serious and even life threatening infection. Over the years it became clear that the patients who developed serious bone marrow suppression generally did so because they genetically inherited low TPMT activity. As mentioned earlier, this enzyme is essential in the chemical breakdown of azathioprine and thus has to be within a particular range for a person to be given this drug.

But no tests are really 100% foolproof as we saw in my daughter’s case. In spite of her test results being absolutely bang in the middle of the normal range and thus determining her dosage, within 3 weeks of putting her on this drug, she was hospitalised in the ICU with a life threatening infection due to severe “neutropenia” or an abnormally low number of neutrophils as a result of azathioprine induced bone marrow suppression. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood.

Hence, as in my daughter’s case, she developed life threatening infection and it was only the prompt and quality of medical attention, broad-based and potent antibiotics and antifungal medicines that saved her life. The dermatologist who had prescribed this drug had never seen this reaction in the many years that he has been successfully prescribing this drug to other children with such severe eczema. It became clear from my daughter’s reaction that there are other genetic variants that can be missed that can also make occasional patients susceptible to such severe adverse effects even while having the desired TPMT levels and these have possibly not been studied or accounted for.

Cyclosporin on the other hand is a potent immunosuppressant and starts to work very quickly (within 1–2 weeks) and the side effects of cyclosporin are almost all ‘dose-related’. Hence the side effects depends almost entirely on the dosage a person is taking although some people are more susceptible to the side effects than others. It cannot be given for long since the longer this drug is taken the more severe the side effects become. The main side effects of cyclosporin are hypertension (high blood pressure) and reduced efficiency of the kidneys (renal toxicity).  Blood pressure and kidney function need to be checked before treatment and monitored closely throughout treatment.

Regular and strict monitoring 

As with any such potent drugs, one has to be extremely particular about monitoring the relevant organ functions throughout the course of treatment. In Aiyana’s case, blood tests are a regular feature and she has almost come to terms with it. Initially I used to take her to one of the premier hospitals in Mumbai but in the past few months a phlebotomist has been coming home to collect her blood sample. He was referred by Aiyana’s pediatrician and is very gentle with her and it has made a world of difference as far as her blood collection is concerned especially since she has to go through this on a very regular basis.

In the case of azathioprine, the blood count levels become extremely important to monitor on a regular basis to check for bone marrow suppression. The medical protocol followed worldwide in the case of azathioprine is to undertake a blood test 3 weeks after starting treatment, then 12 weeks after starting treatment, and thereafter every 3 months if all the results are normal. However, as a learning from our traumatic experience, I would urge you to be on the side of caution and undertake the blood tests for your child every week for the first one or two months and then gradually space it out as per your doctor’s advice if there is no abnormal result. Such regular blood tests are a painful thing especially for a child but it is a necessary evil and must be carried out. These tests normally comprise a full blood count (mainly to check that white blood cell numbers – particularly neutrophil numbers – are not falling below normal levels), and liver function tests to ensure that the liver is not stressed.

When cyclosporin is given as the immunosuppressant, since kidney is one of the main organs which is affected, kidney function will need to be monitored regularly particularly the serum creatinine levels since any condition that impairs the function of the kidneys is likely to raise the creatinine level in the blood. It is thus important to recognize whether the treatment is leading to kidney dysfunction or not. The other important level to be monitored are the cholesterol levels since the reduced efficiency of the kidneys can also adversely affect the cholesterol levels leading to increased risk of heart disease.

Medicine that heals is not always sweet and caring words are not always pleasant

The main reason I chose to write about these 2 powerful drugs is that while there is a lot of information available about these drugs today on the net, it is not always easy to get the most relevant facts. One can get lost in too much of information all of which might not be completely relevant to a parent but more to a medical professional. Information about the plethora of side effects and adverse reactions from these drugs is also enough to scare away any parent from giving these to their children. I have tried to compile all the relevant and important information a parent should know before giving this drug to their child and bring it in one place.

The plan of these kind of treatments to control very severe eczema is, first, to achieve major improvement in the severity of a child’s eczema and then if possible to see it clear completely, though to achieve this may take several months or even years. We have had no choice but to use this treatment on our 7-year-old daughter and I hope that our experience and learnings come of use to other children afflicted with this condition in a severe form which usually affects their lives on a daily basis.  Of course, it is not easy for a seven-year old to take this medicine twice a day and undergo repeated blood tests, but as her caregiver I do not give her any option not too simply because we do not have any. We will have to evaluate her medication in the next few months and then go ahead with the next course of treatment based on her doctors’ recommendations.

I also wanted to share our experience with azathioprine so that other parents can take an informed decision while giving this drug and not repeat our mistake. One can simply never be too cautious where one’s child is concerned.

“Being a mother is learning about strengths you didn’t know you had, and dealing with fears you didn’t know existed”

20131213_180745Aiyana now lives an almost completely normal life with minimal itching and with not much outward physical manifestations of this skin condition which has had an adverse bearing on her social life in the past. I know we are all doing the best we can with the best possible treatments available at this point in time though I am forever in search of other better options that might come our way in the future.

Even then there are some moments that I am plagued by some doubts as to whether we have done everything that we could have to prevent her eczema from being so severe or something else we have not tried so far. I am so grateful for being given a second chance with her and I am sure all those who know her and are greeted by her sunny smiles would agree with me when I say there must be something we are doing “right” after all.

Some basic truths about Eczema

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I have realised over the years while dealing with my daughter’s eczema that there are a lot of misconceptions and also lack of awareness about this condition in our society. Unlike in Western countries where it is very common, here in India, it is not. This leads to a lot of questions, doubts, stares and occasionally not so kind comments which we have faced as a family and my daughter has had to face on her own as well. I would like to highlight some basic facts about Atopic Dermatitis (which is one of the different types of eczema).

  • Eczema is essentially a very dry skin condition where the skin lacks the protective barrier which is critical for retaining moisture and keeping out irritants, germs and other foreign substances. Atopic Dermatitis is a type of eczema which is quite common. It usually begins in infancy or childhood but can strike people at any age. It is also a highly individual condition and varies from person to person. The skin condition is usually very dry and can be scaly, itchy, inflamed in mild cases and crusting, bleeding and oozing in severe cases.
  • Non contagious– Atopic Dermatitis is not contagious and affects only the person with this skin condition. This cannot be spread to another person through touch or in any other manner. This is one of the key areas of ignorance as far as eczema is concerned in our country.

Source: http://www.uichildrens.org/

NFM-  natural moisturizing factor

Stratum corneum- portion of the outer layer of dead skin

Barrier lipid- natural skin oil and fat

  • Moisturize! Moisturize! Moisturize! For people with healthy skin the skin serves as a strong protective barrier against infection or irritation and the fats and oils (lipid barrier) in healthy skin help retain moisture. Effectively the skin cells act as bricks and the fats and oils act as cement that keeps everything together just like a seal. Thus, a critical part of the treatment of eczema is fortifying the protective barrier of the skin by first getting water absorbed by the outer layer of the skin and second to seal the water before it evaporates.  Sealing and retaining the water is done by using emollients ( moisturizers). I will be discussing this in further details in my subsquent articles.
  • Symptoms– Some (but not all) of the common symptoms of eczema are as mentioned below–
  • Broken/dry/cracked skin
  • Many areas of the skin will be itchy and sometimes raw if scratched a lot
  • Some areas may become red, inflamed, develop blisters and ooze liquid
  • Scratching may result in thickened skin which usually returns to normal once scratching stops
  • Although these patches of dry skin may occur anywhere, in Atopic Dermatitis they are usually located on the neck, behind the knees, elbow joints, ankles, wrists, face, hands, feet, arms and upper chest.
  • Controlling eczema– People often ask me how I manage  Aiyana’s eczema. She has had eczema since she was 1 year old, so we have been dealing with it for about 6 years now.  There are some things that have worked for her and some that have not. The first line of treatment consists of emollients (moisturizers) which are used all the time and topical (applied directly onto the skin) cortisteroids or steroid creams as they are ususally known which are used on areas of the skin as required. When these measures fail to work the second line of treatment is prescribed which consists of antihistamines to control the itching; ultraviolet light therapy for children with severe eczema; immunosuppressants like closporine, azathioprine when other medications have failed; immunomodulators like Protopic and Elidel which are medicated creams to control inflamation and reduce immune system reactions and oral cortisteroids like prednisolone in extreme cases. We have had to apply both the first and second line of treatment for my daughter both of which I will discuss separately.
  • Others–  Since we have been dealing with Aiyana’s eczema for some time now, I have been able to incorporate a few other steps that have helped other children by interacting with their parents both online and personally.
  • We have made some lifestyle changes like using mattress covers for all the beds in our house to prevent flare ups due to dust mites; changing from traditional detergent based laundry and dish washing cleaners to natural ones like reetha (soap nuts) and shikakai  etc. 
  •  Also we are very strict with her clothing which is always 100% cotton since sweating makes her itch 
  • We are always very careful about her food intake since some foods like nuts tend to aggravate her skin condition and bring about rashes
  • We have changed the heavy drapes in our house for light cotton curtains and have given gave away all her soft toys since both of these tend to collect a lot of dust This house dust is a major trigger for eczema in a lot of people.

These are some of the measures I have taken over the years to help my daughter live as normal a life as possible inspite of having eczema. I will be discussing these in greater details separately so that you do not have to carry out the kind of extensive search that I did to find out about these products and their availability in India.  I hope that through my experience with my daughter you will be able to help your child as well.