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.

 

 

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.

Our new eczema diet and a heart full of gratitude

It has been some time since I have put up a post. There have been a couple of developments at my end due to which I have been a bit tied up. The first and the most important one is that the combination of the new immunosuppressive medication, Methotrexate, and her new diet seem to be working for my daughter. I will be writing more on this particular diet later in this post.

The second one is that the support group for eczema that I started a few months back has been slowly gathering steam at a pace that I am comfortable with.

And last but not the least, I also want to express my gratitude and share with you this time the amazing team of doctors in Mumbai behind Aiyana’s medical treatment over the years all of whom have helped us in their own ways to deal with her severe eczema.

Diet and its impact on various disorders

diet

I had been reading about how diet affects one’s body in various ways and is especially important when dealing with autoimmune disorders and chronic conditions like eczema. Doctors do not really recommend any dietary changes unless allergy tests prove to be positive for various foods. However, I found that there more than a few genuine cases where people suffering from severe autoimmune and other disorders like Hashimoto, Lupus, Postural Tachycardia Syndrome, Irritable Bowel Syndrome as well as eczema have found relief from the symptoms due to dietary changes and have managed to go off medication completely over time.

It took me more than 6 months to come to this point of view after reading about the life altering experiences of these people and then figure out a diet which I was willing to try out on my daughter. The life stories of some of the people who influenced my decision to try out diet as an option for my daughter are captured in their blogs whose links are as given below-

http://deliciouslyella.com/philosophy/about/– This blog is by Ella who has Postural Tachycardia Syndrome, a relatively rare and painful illness with no known cure and she managed to go off her medications completely after about 18 months of changing her diet

http://www.naturallysassy.co.uk/about– This blog is by Saskia, a ballet dancer with chronic eczema since childhood and who has completely gotten rid of her eczema by altering her diet

http://www.choosingraw.com/about/– This blog is by Gena who has battled with anorexia, Irritable Bowel Syndrome and who now successfully uses a mix of raw and cooked vegan diet to keep herself healthy

http://www.amymyersmd.com/about/my-story/– The last link belongs to a website by Dr Amy Myers, a doctor of functional medicine suffering from Hashimoto’s ( a chronic and painful condition of the thyroid gland with no known cure) who has brought her severe thyroid condition under control after changing her diet/nutrition and life through meditation, yoga, supplements amongst others.

(Functional medicine integrates traditional Western medical practices with what is sometimes considered “alternative” or “integrative” medicine, creating a focus on prevention through nutrition, diet, and exercise; use of the latest laboratory testing and other diagnostic techniques; and prescribed combinations of drugs and/or botanical medicines, supplements, therapeutic diets, detoxification programs, or stress-management techniques.)

Source: https://www.functionalmedicine.org/

The Eczema Diet

Eczema-Diet-2nd-Ed-Front-Cover-192x300

In my post https://eczema-anindianperspective.com/2014/09/23/products-and-resources-which-help-to-manage-eczema/, I had very briefly mentioned that I was planning to start my daughter on a diet for eczema based on the book “The Eczema Diet” by the Australian nutritionist, Ms Karen Fischer. Her daughter had severe eczema as well when she was a 2-year-old and with changes in her diet, Karen managed to control the eczema successfully. She has since written this book based on her own experience with her daughter and the feedback over the years from her patients who have successfully brought their eczema under control using this diet.

This diet is practical and comprehensive with information on products and backed by research; it has menus and recipes for babies, children and adults. It also has non diet information like skin care products and general recommendations for eczema. The objective of this diet is to temporarily take out all the eczema unfriendly foods from the diet and add all foods which are highly nutritious and eczema safe.

There are 2 stages to this diet- Stage 1 and Stage 2 .

Stage 1 is primarily to heal the gut by avoiding foods with any kind of artificial chemicals and limiting naturally occurring eczema unfriendly chemicals (like MSG or salicylates) ; allergens (eggs, wheat or dairy products); anti nutrients (phytic acid, sugar, processed foods) and acid forming and other foods which increase itchiness (oranges, corn, tomato, dairy, grapes, dried fruits). This diet thus helps restore the acid alkaline balance in the body.

Stage 2 is an extension of the first stage where the food groups are gradually expanded by adding back different food groups in moderation ( no processed foods, artificial colourings, preservatives etc) depending on the improvement in the skin condition. The diet also has recommendations on supplements like vitamins, probiotic, glycine, flaxseed (Omega 3) amongst others which are very important in helping the body cope with eczema since the child might not be consuming adequate quantities of the same from food.

I started this diet for my daughter after going through it thoroughly and arranging for most of the eczema safe ingredients as there are quite a few changes in ingredients that we usually use at home. Infact, it took me almost a month to assimilate all the information, answer the different questionnaires and make notes and list down the essential foods and recipes as a part of my preparation before starting this diet.  It’s been about 2 months since I have started this diet for my daughter.

Since it is pretty restrictive in the first stage, I took my time to prepare my daughter mentally for what was to come in the following months by telling her about the diet. I also made her read excerpts from the book about other children who have benefited from this diet and have seen their eczema either disappear almost completely or finally come under control. Only when I was sure that she was ready for this change and that I had prepared adequately for this diet did I finally start the diet for her.

The recipes and menu

recipes

Over the past couple of months I have tried out various recipes from this book as well as developed and modified some recipes from this book using eczema safe ingredients. This is to ensure that Aiyana not only followed this diet completely with no exceptions but also had a wide variety of options to keep her from feeling deprived of all the store-bought and other foods that we are all so used to having nowadays. The good part about doing all this apart from the health benefits for my daughter is that my entire family now has much less processed foods, negligible amount of junk foods, healthier organic and fresh foods, homemade preparations of bakery and other  foods with no sugar and preservatives.

This has not been easy especially since I have had to cut out sugar, dairy, wheat, eggs and all processed foods, all spices ( apart from garlic and salt) out of her diet and give her a  very limited variety of fruits and vegetables. These last couple of months I have extremely been busy with this diet trying out the book’s recipes and new recipes almost on a daily basis since I have had to modify some of them to suit her needs and our Indian palette. This has been made more difficult since the recipes in the book are for meant to suit an European palette while we are used to our Indian spices and foods. What has helped me is my past experience with gluten-free cooking for my daughter in 2012 ( I have covered my experience in the post- “Eczema and diet” ) and my determination to ensure that I find a way to manage my daughter’s health in a more natural way in the long run.

The book can now be purchased both as a paperback and kindle version online at amazon.in.

When there’s a will there is a way

 inspire-31What encourages me is that Aiyana’s skin condition has improved in the last couple of months. Here I should also add that we had to start her new immunosuppressive medication around the same time as the diet and that the new medicine also takes 3 to 4 weeks to show results. But with my experience of giving her the third immunosuppressive medication (Cyclsosporine, Azathioprine, Methotrexate) I can say with conviction that the only medicine which has truly worked for her and made her skin completely smooth and normal all over has been oral steroid in high doses. The other medications have either just about helped keep her eczema under control (Cyclosporine) or brought about bone marrow suppression (Azathioprine); I have covered the effects of Azathioprine and our traumatic experience in my earlier post “…the tough get going (Part 2)“.

Hence, I am really happy to see that after starting her on this diet her face is totally clear of any rashes and has finally got back that healthy glow that had disappeared under the effect of all the strong medicines being given to her. I am willing to continue the hard work required to carry on with this diet and keep her motivated to follow the same for the next few months at least. I will keep you posted on further developments about my daughter’s skin condition in relation to this diet in my future posts.

 A heart full of gratitude

thank you

As the year comes to an end, I stop to count my blessings for all the good things in my life and my heart is filled with gratitude for all those doctors who have been with us in my family’s difficult journey in the past few years. In this post I would like to thank the amazing set of doctors behind Aiyana in her fight against eczema. I have briefly mentioned them in my earlier posts as well but have never mentioned their names which I do now with their consent.

 

 

Dr Shashi Merchant is Aiyana’s pediatrician from Breach Candy Hospital, Mumbai, and has known her since birth and held her as a newborn baby. She has been a pillar of strength and is unwavering in her support and care for my daughter. She gave us hope when we needed it the most in the darkest of moments when Aiyana was fighting for her life in the hospital last year. We are all lucky to have had her on our side in this journey.

Dr Amrita Talwar is Aiyana’s main dermatologist for the past 4 to 5 years now and has done much more and beyond than required as her role as a doctor. Without her help and guidance about the myriad aspects of dealing with eczema (including the essential but non medical ones) life would have been significantly more difficult for us. I have her to thank for encouraging me to write about our experience and starting this blog and for pushing me and helping me to start the Eczema Support Group.

Dr Manish Shah is a leading senior pediatric dermatologist and is the dermatologist whom we consult regarding her immunosuppressive medications and narrow band UVB treatment. He gives us advice when required and gives us much-needed guidance about giving these strong medications as well as dealing with and minimising the harsh side effects. We are very grateful to have him as Aiyana’s consultant dermatologist.

Dr Mahesh Balsekar is another well-known pediatrician in South Mumbai with Breach Candy Hospital. He is the one who diagnosed and admitted Aiyana to the hospital in time last year (Dr Merchant was on holiday at that time) which ultimately saved her life. Dr Balsekar thus gave her and the doctors at Breach Candy Hospital a chance of fighting her life threatening infection. My heart swells with gratitude for Dr Balsekar for keeping our family intact and saving my daughter’s life.

We are also grateful to the entire pediatric division of Breach Candy Hospital, haemotolgists Dr Antia and Dr Agarwal and the entire support staff at the hospital for playing a very important role in our daughter’s stay at the hospital last year.

A new year, a new beginning

new year

And so another year ends and a new one is about to begin soon. May the new year be filled with joy, laughter and good health. But may you also find the strength to overcome whatever obstacles lie in your path and remember to enjoy every precious moment with your friends and family.

From my family to yours

A Happy 2015!