A primer on immunosuppressive medications for eczema from a parent’s point of view-cyclosporine, azathioprine and methotrexate

I am really sorry for not having written anything for a really long time now. I have been busy with my Functional Medicine Health Coaching Course (from the US based Functional Medicine Coaching Academy) and my Dietetics and Nutrition course. The Health Coaching course has been an immensely enjoyable and fulfilling experience and I become a Certified Health Coach next month! I will write more on that next time. This post is about something else.

I have written quite a while back on a comparison between 2 immunosuppressive medications that my daughter has been on earlier on. In this post, I want to write about one more immunosuppressive medication that my daughter has been on since the past couple of years and it is called methotrexate.

Before I go any further though, I would like to out some things in perspective. Since these medications are very powerful and potent drugs, these medications are the last line of treatment for Atopic Dermatitis. They do not “cure” eczema, they are given to manage severe eczema which are not being managed by other lines of treatment. These are usually given for many months or years depending upon the patient’s condition. These medications are not given to any patient, child or adult, unless all other forms of treatment (moisturisers, topical steroids, narrow band UVB, wet wrapping, oral steroids) have failed to reduce suffering due to severe eczema or even bring it under control.

Also, I would like to mention that while we certainly had no choice in giving our daughter these medications, initially I did not know that there was anything other way that we could bring her very severe eczema under control. However, I am really happy to say that this is no longer the case and if you have been following my blog posts you will know what I am talking about her Functional Medicine treatment. I would also like to mention here that my daughter’s condition is much better now. We have lowered her dosage and are looking at hopefully gradually continue to lower and finally discontinuing her medication in the near future. But I will cover that in my next post.

A few things which are common to all these types of medication are as given below-

  • they need to given and monitored regularly by health professionals to monitor for adverse side effects
  • dosages and frequency are different for each drug and must be followed meticulously
  • since these medications work by suppressing the immune system, precautions must be taken to limit exposure to infections
  • usually live vaccinations are not given to patients (children) who are on these medications

Cyclosporine and our experience

Cyclosporine was our first introduction to immunosuppressive medications in 2012. Aiyana was already on oral steroids at that time to manage her very severe eczema which had escalated beyond control and she initially needed an a fast acting intervention like oral steroids. The doctors prescribed cyclosporine as the systemic drug to help manage her severe eczema.

Cyclosporine works by blocking the body’s inflammatory process which can reduce itching and rashes. After about 6 months of being on this medication in 2012, we switched to azathioprine in 2013 as recommended by another dermatologist. However, we had to come back to this medication once again in mid 2013 since azathioprine had a disastrous effect on her health. She was on cyclosporine for another year till we switched over to the third immunosuppressive medication methotrexate in late 2104.

A word of caution

However like any other such drug, the side effects of cyclosporine are many and in particular it can affect the kidney and blood pressure adversely. Hence, regular blood tests need to be carried out to determine kidney function in particular and to monitor other health parameters.

Research

Cyclosporin in the treatment of severe atopic dermatitis: a retrospective study- https://www.ncbi.nlm.nih.gov/pubmed/15175770

Azathioprine and our experience

Azathioprine was the second medication that we used to manage our daughter’s eczema. She had already been on cyclosporine for a year and a half and the doctors wanted to get her off cyclosporine since it clearly had not been very effective in managing her eczema very well.

Azathioprine is another type of immunosuppressive medication which is used for many autoimmune conditions including atopic dermatitis. It was originally developed to prevent infections due to transplanted organs like the kidneys. It takes longer than cyclosporine to take effect and is not used for acute cases of eczema due to the time taken. Since one of the main side effects of azathioprine is bone marrow suppression, a blood test measuring an enzyme called TPMT (anthiopurine methyltransferase). Those with low levels of TPMT are unable to break down azathioprine in the normal way and are at high risk of dangerous bone marrow suppression. Hence, those with very low levels of TPMT are not given this medication.

A word of caution 

However, as we realised to our dismay, just getting the TPMT levels tested and taking a decision of giving azathioprine to someone may not work out as planned at all. And we also learned a HUGE lesson in terms of how things can go terribly wrong even when all known rules and protocol are followed. Our daughter was one of the outliers who suffered from the disastrous side effects of azathioprine inspite of having completely normal and within range TPMT levels. Infact, it was this experience that led me to search extensively another form of intervention for her. I have written about this in details in my earlier blog posts- https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/. 

Azathioprine can have a host of side effects apart from the bone marrow and can also affect the liver adversely.  Tests are done regularly to ensure liver, bone marrow and other organs are working properly.  Any symptoms like hair loss, flu like symptoms and any others should be looked into immediately.

Research-

A retrospective evaluation of azathioprine in severe childhood atopic eczema- https://www.ncbi.nlm.nih.gov/pubmed/12174104

Methotrexate and our experience

Methotrexate was the third immunosuppressive medication that our daughter was prescribed in 2014 and she is still on this medication as of now. This drug has worked for her pretty well and she is now on a reduced dosage. With a very good response to the Functional Medicine treatment which is now finally showing its impact after being on this treatment for almost 2 years.

Methotrexate is actually a drug used mainly for treating psoriasis and rheumatoid arthritis. Methotrexate belongs to a class of drugs known as antimetabolites and also works by suppressing the immune system.

A word of warning

Methotrexate can also cause some serious side effects by affecting the bone marrow, liver or lungs and once again regular blood tests are a must to monitor the effects of this medication.

Research

http://www.mdedge.com/edermatologynews/article/100861/atopic-dermatitis/wcd-methotrexate-found-safer-less-effective

The other side of the story

While I have given above an account of our experiences with the various drugs, I would also like to point out the other side of the story- these drugs help save many lives. The primary objective of these medicines is to suppress the immune system. They improve the chances of a patient to successfully undergo an organ transplant by preventing the organ getting rejected by the immune system. These medications are also used in other conditions like severe eczema, rheumatoid arthritis and other conditions as well where the immune system is involved. No matter what the reason for taking these medications, these medications should be taken only if prescribed by a qualified medical professional and should be monitored regularly under his care.  

 

Just show up…

Show up

As someone once said, “sometimes the bravest and the most important thing you can do is just show up“. This is especially true when we really do not like the turn our life has taken. It is true when we want to find a better way of dealing with our problems but we do not have a choice right at that moment and so we go along with it. This is what it feels like for us when we give our daughter these medications. But I know that I am doing the right thing for her at this moment and at the same time I also know that I am doing whatever it takes to hopefully enable her to lead a healthy life without depending on any medications.

But whether I succeed in this or not, I will always know that I never shied away for showing up for whatever life has to offer us. This is what enables us to deal with eczema and its effect in our lives. This is also what makes life seem so enjoyable and memorable for all of us and is so much more than any difficult circumstances, illness and medication.

 

 

Thank you for your part in our journey

 

New Year's resolutions

Another year comes to an end and yet another one begins

I wish you and your family a year filled with good health and happiness. I completed 3 years of writing this blog in October last year and it has been an amazing experience for me. As always, I am reminded once again about how fortunate we are as a family in all that we have and how grateful I am for the love and support of my family and friends. We also remain grateful to the wonderful support shown by our doctors in being there for us every step of the way. So thank you all for simply being a part of our lives!

I feel honoured to be able to share with you our experiences in dealing with eczema and most importantly to be able to share with you our experiences of dealing with eczema with the help of Functional Medicine protocol. I  want to emphasize upon this last bit since most of you may not be aware that such an option/treatment exists. I have written about this in my earlier post- https://eczema-anindianperspective.com/2015/09/10/the-functional-medicine-and-gut-health-approach-to-managing-chronic-conditions-including-eczema/

We are now mostly familiar with the conventional medical treatments but have lost touch with many others some of which used to be a part of our own culture like ayurveda. In fact, Functional Medicine is similar to our ancient Ayurvedic tradition in many ways since it approaches the individual as a whole and does not just treat the symptoms. However, it differs in many ways since it incorporates the latest science and research, diagnostic testing, use of nutraceuticals amongst others.

Life is full of ups and downs; the trick is to enjoy the ups and have courage during the downs

Road to Eldorado

It has been a while since I have given an update on my daughter’s skin condition and treatment. Since I last wrote about the essential oils, there has been a lot of upheaval with regards to my daughter’s condition. Staph infection, caused by the bacteria Staphylococcus aureus is very common among those suffering from eczema. It is a very common bacteria residing on our skin and is invisible for all intents and purposes most of the times. But for those with eczema/sensitive skin it tends to create problems by causing infections. My daughter had recurring bouts of this infection starting in August last year. It notoriously difficult to get rid of once it gets entrenched. This led to a couple of rounds of antibiotics and oral steroids to control her skin condition which had deteriorated rapidly. These medications were  added on top of her immunosuppressive medication, Methotrexate, which also had to be increased to manager her eczema.

Thus, till about mid November last year, it was again a very trying time for us as a family. We had to deal with her eczema flare up which had actually became a constant feature since August and  it had also somewhat as a shock for us. This was because her eczema had been fairly under control for the past 10 months or so under the Functional Medicine treatment and her medication had been brought down gradually. As part of the treatment we got her Functional Medicine tests like Comprehensive Stool Analysis and Optimal Nutritional Evaluation done to determine her gut/microbiome health and her levels of vitamins, minerals, amino acids, antioxidants and other metabolic markers from the European Genova Diagnostics laboratories.

While the stool test did show some improvement from the earlier test done in January last year, the urine test was a bit of a disappointment but at the same time shed some light on her flare up. The urine metabolite test showed a huge amount of oxidative stress. Oxidative stress is akin to the process of combustion in our cells which use oxygen that we breathe in and food as fuel to provide our body with energy. However, in the process of creating energy, some byproducts in the form of extremely volatile free radicals are created which are usually neutralized by our body’s natural antioxidants. But when our body becomes overwhelmed by oxidative stress and/or there are not enough antioxidants to combat oxidative stress, problems occur. Infact this is the process of ageing that we all face over the course of our lives.

However, once we figured this out and boosted her supply of antioxidants with foods and supplements, her skin condition improved gradually. I increased her intake of natural antioxidants like strawberries, blueberries, blackberries, raspberries, spinach, Brussel sprouts, broccoli, beetroot and other colourful fruits and vegetables in various forms such as soups, smoothies, side and main dishes. Under the guidance of our Functional Medicine practitioner her intake of antioxidants like Vitamin A, C and D as supplements were also increased.

Other natural and traditional interventions

herbal medicine in capsules.

For the past year or so, I have been dabbling in and increasing my knowledge of traditional and natural interventions using local herbs and spices to manage eczema and other minor health issues. Over the past 6 months or so I had introduced a Curcumin supplement in a highly bio absorbable form. It is the main active ingredient in our local spice called turmeric used regularly in most of the Indian dishes, but for therapeutic needs one needs to consume much more than we can usually do from food alone. Curcumin is a super antioxidant and is highly anti-inflammatory at the same time. I use the Indian brand Cure Garden Daily Defense  and I increased the dosage to combat her oxidative stress.

The other supplement that I had added at the same time is a popular herb called Tulsi (or holy basil) from the brand Organic India Tulsi. Tulsi is a very important herb available locally and is used extensively in our Ayurvedic treatments. It is an adaptogenic herb and is thus very good for stress management, has antibacterial properties and increases the activity of antioxidant enzymes amongst a host of other benefits.

The other 2 local herbs that I introduced were neem from Himalaya Herbals (or Margosa) and Guduchi. Neem is again a common and popular local herb which is extremely beneficial for improving skin health and boosts immune and liver function. Guduchi is an adaptogenic herb, boosts the immune system and improves liver function amongst other things and is again beneficial for the skin. Then there are a few other herbs like berberine and burdock root that I use internally as well according to traditional Chinese medicine to enhance liver detoxification amongst other things. I intend to write about such herbal and natural interventions in a separate post later this year. I also intend to pursue a course in herbal treatments to take advantage of the vast natural resources that our country has in creating health and which we seem to have lost touch with.

Therapeutic grade essential oils continue to be the mainstay of our fight against staph infection. Lavender, tea tree, geranium and other essential oils from the brand Eden Garden are the ones that I use diluted with coconut oil as a carrier oil for applying locally. I have already written about this in greater details in my last blog post a while back – https://eczema-anindianperspective.com/2016/05/27/essential-oils-for-managing-eczema/.

Hopefully, once again over a period of time I will be able to phase out her medications with the help of her doctors. We have a long way to go yet and the road ahead may yet be a winding one but I know that we are pretty much prepared for our journey.

Reclaiming optimal health 

optimal wellness in wood type

You may be aware from my earlier posts that I am a certified Health Coach from the US based Dr Sears Wellness Institute. However, I have not mentioned earlier that I am currently pursuing a one year course with the Functional Medicine Coaching Academy (FMCA) which is offering this course in collaboration with the Institute of Functional Medicine (IFM). My daughter’s ongoing treatment is with the help of a UK based IFM certified practitioner, Pete Williams. My course is an exhaustive one and encompasses diverse topics like positive psychology, coaching process, motivational interviewing and functional nutrition, Functional Medicine structure and operating system like the GOTOIT, Timeline and Matrix; mind body techniques and various relevant systems and technologies.

fmca-coaching-center-ifm

As a part of my curriculum practicum I have already started counselling a few clients with various health issues on diet, lifestyle changes amongst others. I am really looking forward to completing this course and setting up a clinic in Mumbai. This clinic will be in conjunction with my daughter’s dermatologist and the coauthor of my book “ I have eczema…so what?”, Dr Amrita Talwar later this year. I hope to bring my personal experience of dealing with my daughter’s autoimmune condition with dietary, lifestyle and other changes to the table apart from all the knowledge that I would have gathered in my course as a certified Health Coach.

Alone we can do so little, together we can do so much

I always knew that it is difficult to tackle problems including health related alone, but I realised how critical a support system really is during our darkest days. Our support system of family, friends and health professionals acted as a kind of a well knit community and enabled us to pull through. It is time for me to give something back now using my experience and knowledge. I look forward to doing my bit in building a community focussed on creating optimal health at a time when chronic conditions are rising exponentially and conventional treatments are falling short . As Dr Mark Hyman (Chairman, IFM Board of Directors and Director of the Cleveland Clinic Center for Functional Medicine) has said “The power of community to create health is far greater than any physician, clinic or hospital”. I am excited and look forward to this new chapter in my life.

As a wise person had once said ” Optimal health is a journey taken one step, one habit, and one day at a time“.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Eczema and its connection with books, music and meditation

It has now been almost three years that I have been writing about our family’s experiences of dealing with eczema. These are experiences that have shaped our life and changed it irrevocably as most chronic conditions inevitably do. Most of the times we do not have a choice about these changes and we can only let events unfold themselves as they occur. But we do have a choice as far as our responses are concerned. We can choose to accept these changes and deal with them or we can choose to rail at them and complain about them. While it is far easier to do the latter we chose the former path and we are only now seeing the positive outcomes associated with them. But dealing with any kind of lifestyle change is not easy, especially ones which are associated with health conditions.

Stress, anxiety and self confidence

nio pensativo mirando el mar

Since I am my daughter’s primary caregiver, I spend a lot of time focusing on her bathing and moisturizing routines, two crucial aspects of managing eczema. But I also spend an equal amount of time or even more on something that we don’t get to see. The emotional scars that are left behind in a child struggling to cope with a severe health condition day after day, month after month with no end in sight. The emotional pain of living with eczema, the erosion in self confidence linked to the constant scratching and physical rashes on the body, the frustrations which can build up due to the restrictions in terms of activities and diet to name just a few. The stress and and anxiety that a child experiences if not managed properly with due care and attention, can lead to many more complex issues once the child becomes an adult. And even though we do not realise it always, a child has his or her own share of stressors which may seem trivial to us but are actually very real and important to them. This is not something we can take lightly or ignore, this is something akin to a garden where the flowers and the trees have to be tended to and given a great deal of attention while they are still growing.

I had written a post earlier about how you can help your child cope with eczema and you can read about it at https://eczema-anindianperspective.com/2013/11/19/beauty-is-not-just-skin-deep-helping-your-child-cope-with-eczema/

This post takes that topic even further based on our own experiences since then and expands on that topic.  For us this aspect of managing eczema became even more important after our daughter’s catastrophic reaction to her medication’s side effect in 2013. She battled a life threatening infection and was hospitalized for a month. I have written about it in my post https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/

She also lost all her hair in a few days and had a tough time in school once she resumed a couple of months later. Her school discussed with and sensitised her classmates about her condition and sudden change in appearance including lack of hair.  But there were a few children who would tease her about her lack of hair and her appearance. Even outside school she became the subject of many stares and comments due to her physical appearance. It became painfully obvious that there would always be some people who were not sensitive enough to other’s sufferings and I would not be able to protect my daughter from such people the way I would have liked to. I decided then and there that I would ensure that I would teach my daughter to find the strength that was already within her and teach her ways to cope with such people. I would try and make sure that she would not lose her self confidence and self respect and that she would know that she had a choice. A choice as to how she would react to such people, a choice as to how to deal with difficult situations and a choice to be happy.

please help

It is really empowering to learn that while we cannot control what other people think and say we have a choice as far as our response is concerned. The stress associated with living with any chronic condition like eczema is usually very high and very real and I knew I had to figure out ways to manage it. Books, music and meditation became my tools to achieve this. Of course, all this did not happen overnight. It has taken a lot of research, time and effort to figure out what worked for us and we are still a work in progress. But what pleases me the most is that I can see the difference all this effort has made in our lives. In this post I would like to share in some details all that has helped us.

Books are the quietest and most constant of friends; they are the most accessible and wisest of counsellors, and the most patient of teachers.

Boy, standing on a pile of book reaching for a star

First I would like to mention some of the books that have provided not only my daughter but all of us with a lot of inspiration and encouragement. These are books which have simple story lines covering various topics like gratitude, happiness, strength, acceptance, compassion to name a few. I have been researching and buying such books for the past few years but a few have won a big place in our hearts. These are books I read to both my children again and again and they love to hear it every time. They are available on Amazon India (amongst others) and are easiest and most convenient to just order online. There are of course many many such books available if only one looks for them. The ones mentioned below are some of our family favourites.

  • Freckleface Strawberry by Julianne Moore- it is about a 7 year old red haired girl who has a face filled with freckles. She has to put up with all her friends calling her Freckleface Strawberry. It is a beautiful story about a girl who finds the strength to accept something that really makes her life difficult but ultimately she accepts it and then goes on to lead a happy life inspite of it. This book is the one that really helped my daughter accept her skin condition since it dealt with a similar problem.
  • Stand Tall, Molly Lou Melon by Patty Lovell- this is another book about a very short and feisty girl who has buck teeth, has a voice like a bull frog. She is worried about moving to a new school but her grandmother encourages her to be brave by just being herself, smile and sing loud and clear. She does just that and stands up to a bully in her school and wins a lot of friends eventually. It is a beautiful book about being yourself and real courage.
  • What Does It Mean To Be Present? (What Does It Mean To Be…?) by Rana Do Orio- this book is about the meaning of being present, paying attention to each and every moment. In a simple but profound way it teaches the importance of enjoying each and every moment as it comes and some key values like compassion, kindness
  • How Full Is Your Bucket? For Kids by Tom Rath and Maurie J Manning- This book is about a boy and a fictitious bucket which hovers above his head just as he was told by his grandfather. He feels happy when the bucket is full and feels sad and miserable when it is empty. He soon realizes that everyone around him has a bucket just like his and that during the day either the bucket is fills up or it is becomes empty. He also learns that by helping to fill another person’s bucket he also fills up his own. This book teaches us in a very simple way the importance of self esteem, helping others and taking responsibility for one’s happiness.
  • Zen Shorts (Caldecott Honor Book) by Jon J Muth- This is a gem of a book which has three short and simple stories each teaching us a different life lesson. One story teaches us about happiness by living in the present moment, another is about letting go of the past and the third one is about accepting change and uncertainty as being an intrinsic part of life. These are supported by beautiful illustrations and is a superb addition to one’s list of books to read to children

“What lies before us and what lies behind us are small matters compared to what lies within us”

wellbeing and healthy lifestyle concept, yoga background

Meditation, being a very ancient art is also one which is synonymous to our culture. Sadly, many of us seem to have lost touch with it and all that it has to offer us. The good thing is that it is once again gaining prominence not only in our country but around the world. There are different types of meditation practices that one can follow but the one that I will be discussing here is called “mindfulness meditation”. I find this type of practice to be very child friendly and flexible both of which were major requirements for me. Mindfulness is that art of paying attention to the present moment in a non judgmental and friendly manner. Over time the practice of mindfulness can help us look within to find the strength in times of trouble, lower our stress levels, tap into our inherent compassion and also show us how being grateful is the key to real happiness.

I use a mix of simple formal meditation practices and informal practices which I try and weave into our daily routine. Of course, when one slips up, you have to simply start off from where you left off without judging yourself or any one else for the same. This is one of the key things that meditation teaches us over a period of time, the practice of paying attention which by nature should be non judgemental. It enables us to accept ourselves as we are warts and all and is the first step towards self awareness.

I use some music CDs with guided meditation practices and a few books to incorporate some elements of mindfulness into our daily lives.

  • The CDs that I use are
    Sitting Still Like a Frog: Mindfulness Exercises for Kids (and Their Parents) by Eline Snel – it is a book and CD combination which works very well for us. The book is for the parents/adults to get a sense of the meditation practices and serves as a guide to the guided mediation. The guided meditations are simple and easy to follow and should ideally be done together as a family. There are meditation practices for different moods and problems and are very easy to follow by children on their own as well. You can also buy the one that is available for teens.
  • Planting Seeds: Practicing Mindfulness with Children by Thich Naht Hanh- This is from the practice run by one of the most well known Minfulness teachers in the world called Thich Naht Hanh. It has a combination of music and guided meditations along with a book to support it. This book discusses in details the impact of mindfulness in different aspects of life and how to bring more compassion and peace to the world. The practices that we love the most are Pebble Meditation and the Deep relaxation.
  • Planting Seeds: Practicing Mindfulness with Children by Amy Saltzman- these are a set of guided meditations through short stories which will appeal to all children. Again, these deal with various feelings and emotions with the help of simple breathing exercises. This is available in book form and on streaming apps like Spotify (not available in India at the moment).
  • CALM for kids- this is one of my favourite mobile phone (and desktop) apps for meditation. They have now launched a section for kids where they have guided meditation practices through lovely stories.
  • Insight timer for kids–  a new app that I have started using recently has a huge variety of guided meditations by different people and is quite useful in its variety.

A couple of books that I must mention here are on mindful parenting. They have been a valuable tool in giving me practical advice and ideas about incorporating mindfulness into our daily lives in simple ways. It has a tremendous impact on our lives both in terms of health and happiness and this has been confirmed in various scientific studies. The two books that have struck a chord with me are

There are many more such books on parenting and mindfulness, these are two that have really made a difference to our lives. These books not only cover the basic concept of mindfulness, they also offer practical ideas about how to incorporate into our own lives including our parenting practices. There are beautiful formal and informal practices in the books which are very child friendly and can be enjoyed by the whole family.

Music is the rhythm; art is the passion and life is the subject

Piano keyboard background with selective focus. Warm color toned image

Music can play a therapeutic role in addressing various physical, social, emotional needs of a person. It can play an important role in managing chronic eczema as well by lowering stress levels and providing solace in times of emotional turmoil due to this condition. Any kind which can help one relax will do. Music is used by many as a form of therapy but we do not need to be trained as one to use is in our daily lives. The right kind of music can inspire us, lower stress and generally contribute to our overall wellbeing whether it is listening to music, playing it in some form or singing songs. The music CDs for meditation that have been mentioned earlier work very well in this aspect.

Girl paints a coloring book for adults with crayons

Art is another form of therapy which is widely used to deal with stress and anxiety. And it is one of the best suited for children as it can enhance creativity at the same time. Research also shows that certain shapes and patterns like mandalas are more helpful in reducing stress than others. There are now a lot of Mindful colouring books available which are meant for this purpose. You can use them to spend some quality time with your child and at the same time switch off from daily stresses and focus on a simple but pleasurable activity.

A conversation is so much more than words: a conversation is eyes, smiles and the silence between the words

Close-up of family discussing on sofa

The simple art of conversation and dialogue is an amazing way of helping your child cope with the stresses of living with eczema. Conversation was something which was pretty mainstream in our earlier generations but is now being overshadowed at times with our hectic, busy schedules and digital domination. Switching off from the digital world from time to time for the family as a whole is one of best ways to enable this. I am yet to implement a digital curfew but I intend to from time to time starting with a few hours on weekends.

I struggle myself to find a balance at times and make sure that we have regular chats from time to time as a completely family or even one on one when required. Many a times during our heart to heart chats before bedtimes my daughter and my son have shared their worries, problems and even their triumphant moments. We have come to know each other’s way of thinking, shared some of our worries and our conversations have often helped my children calm down with the simple act of listening.

Yoga  and others

There are many more such ways in which you can help your child and yoga is the one which comes foremost to my mind. This is something that I have not really been able to explore much till date with my children but I wanted to mention anyway. I plan to integrate this practice as a part of the bedtime routine in the near future. You can find out about some child friendly yoga classes in your neighbourhood plus there are a lot of online options as well nowadays. These include websites like gaia.com with streaming videos as well as those offering digital downloads for those unable to join a class for any reason.

There are also some lovely books which offer simple exercises which can be done anytime or before bedtime to promote restorative sleep. There are of course many other books that are available for children.

When the mind, body and spirit work as one, anything is possible

mind, body, spirit, soul and you

You may have been wondering why I have chosen to write so much about mindfulness, meditation, yoga, emotional counselling with regards to eczema when most of us are used to dealing with the medications and the treatments. Medications and treatments of course play a large role in dealing with eczema and we are familiar with most of them.

What I have learned over the past few years of dealing with my daughter’s eczema is that true healing is a combination of treating the body along with mind and spirit. My daughter would not be where she is today in terms of her positive attitude towards life and a cheery disposition inspite of struggling with severe eczema had I not placed equal importance on all three aspects. I have learned and I am still learning from many others who have done just that and much more and inspire me to carry on.

As you would have also realized after reading my post, I am very passionate about books and they have been of immense support for us. They play a very important role in our lives in managing eczema and I wanted to share it with you. I have also had the privilege of writing a book with my daughter’s dermatologist Dr Amrita Talwar this year called I Have Eczema… So What? – Inspirational story book for children. I have mentioned it earlier as well but wanted to mention it in this context. The book is a beautifully illustrated children’s book about a 9 year old girl with eczema, who faces all kinds of emotional and physical problems. She eventually learns to manage her eczema and cope with it in a very positive manner with the help of her family’s love and support.

IMG-20160418-WA0007

The book is available at some Crossword Stores and online at amazon (physical and ebook format) and flipkart (physical format). You can buy it at

 

 

I hope that some of the things that I have mentioned in this post will be useful for you and your family in managing your child’s eczema.

May we all find the “strength to endure the pain, the wisdom to think things through and the courage to face our fears” …

Essential oils for managing eczema

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

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. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It’s finally here! My first book “I have eczema….so what?”

Invitation - eczema Book launch

I had mentioned in my last post that I was writing a book for children suffering from eczema. This is in conjunction with my daughter’s dermatologist, Dr Amrita Talwar who is a coauthor of  this book. Both Dr Talwar and I realised the need for a book which is meant for children who have eczema since there are hardly any resources for them even though there are many for adults.

It gives me great pleasure to introduce you to Maya, the 9 year old protagonist of my book “I have eczema…so what?”

Page layouts 1-2

9 year old Maya from “I have eczema…so what?”

The book  is written through the eyes of a 9 year old girl called Maya who suffers from eczema. She has to deal with various issues like the physical discomfort and pain of living with eczema, social and schooling problems like isolation and teasing, emotional upheavals and even stress. This book would first and foremost help children to understand and learn about eczema in a child appropriate manner. Maya’s family rallies around her and ultimately as a team they manage to help her cope with eczema. Maya and her family are thus able to make eczema a part of their lives so that it does not completely overshadow everything else. It is a book for families as much as it is for children suffering from eczema.

I have eczema…so what?” is ultimately a story of courage, love, teamwork and the strength that comes from within by being a part of a loving and supportive family. It is based on our experiences of dealing with our daughter’s severe eczema, her trials and tribulations and the strategies that we developed over the years to deal with it.

Book launch details

Date: 21st of April, Thursday

Venue: Crosswords, Kemp Corner in South Mumbai

Time: 6 pm onwards

Individually we are one drop, but together we are an ocean 

For those of you who have been following my blog will know how far we have come since I first started writing. It all started right here, with this very blog. This is where I honed my skills and which has now culminated into my first book. However, the book is a result of teamwork as is usually the case.

I am blessed to have Dr Amrita Talwar as my coauthor and mentor for this book, Ms Preeti Vyas (Fun Ok Please) as my publisher and Ms Shraddha (Happy Fish) as my illustrator. Amrita has also played a key role as the person who encouraged me to write about our experiences in the first place starting with this blog. Thank you Amrita for always encouraging and believing in me! 

Family, a group experience of love and support

20160325_134137

My inspiration is of course my 9 year old daughter who faces her situation every day with a smile on her face, manages to get up every time she falls and shows us the what true courage and grit is all about. My husband, my 5 year old son, my mother and our immediate family have all played their critical and immensely supportive roles in enabling us to deal with eczema as a team. This book is a result of this support as I have drawn my own strength from my family and friends. In fact, I have not only been able to act as a primary caregiver to my daughter but I have also found the courage to share our experiences through my blog posts, articles and now this book. Words are really not enough to express my gratitude…but I need to say them anyway, so a big THANK YOU!    

Incase you are interested in this book and/or joining us for the book launch, please get in touch with me via-

email at eczemaanindianperspective@gmail.com,

twitter at @eczemainindia 

facebook at https://www.facebook.com/eczemaanindianperspective/.

 

 

 

 

 

 

 

 

 

 

 

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

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/

http://drhyman.com/blog/2014/10/10/tend-inner-garden-gut-flora-may-making-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

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 potencyHydrocortisone 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.