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.

 

 

Eczema and diet (gluten free)

Eczema has been known to be affected by diet in many cases especially in the case of children. Eczema can be triggered or made worse by many things like house dust mites, excessive humidity or dryness, pollen, stress or by eating certain foods amongst others. In the case of many children with severe eczema, food maybe one of the causes but in the case of a few children it maybe their only trigger.

When Aiyana’s eczema became worse in June 2012, we did her blood allergy test which looks for specific allergen-related antibodies (IgE or immunoglobulins which is one of the 5 sub classes of antibodies) in order to identify her allergy triggers. I was really hoping that by finding out her food triggers we would be able to control her eczema which was worsening and slowly spiralling out of control. But I also knew that food is very rarely the only trigger and hence changes in diet alone cannot by itself help control eczema without the support of a good skin care and moisturizing routine.

Her results came back positive for most of the 29 allergens we had tested her for  showing high IgE levels for tree nuts (like hazelnuts, walnuts), house dust, sesame seeds. Her total IgE levels were higher than normal and surprisingly the test showed positive results for wheat, oats, lemon as well. As her pediatrician put it so well when she explained the results to us- “ Aiyana’s skin is like an angry person, such a person will react to most triggers at this point in time”. By the time we had got these results, we had seen her skin condition deteriorate continuously since October 2011 in spite of trying out the entire range of moisturizing and topical corticosteroids arsenal as and when required but to no avail. I decided to control her diet for the next year or so in the hope that it would help improve her eczema since it has seemed to help some other children. Since surprisingly for us she had a high positive outcome for wheat in the test, I really hoped that it might have been a key trigger for her eczema becoming worse over the past year or so.

In any case I was determined to leave no stone unturned in trying to control and improve her eczema. Hence I made certain changes in her diet, the most difficult part of which was making it “gluten-free”. I have decided to share my learnings that I gained by doing a lot of research on this unique diet, its availability in our country and ways in which I made sure Aiyana was able to follow this at home and more importantly outside as well.

GF

LUCKILY for us, we did a much more accurate skin scratch test for her in May this year and gluten was ruled out as an allergen and slowly we were able to introduce wheat and other forms of gluten without any issues. 

Gluten free??

In a country like India where allergies and diet restrictions are not very common and awareness is very low, the challenges of following a “gluten free” diet increases manifold. And when I had to explain dietary restrictions to a 6 year old child (and to others around us) and ensure that she follows it, I had to  make a lot of changes to the way we thought about food. Gluten is the protein complex found in wheat, barley and rye whereas oats is inherently gluten free but invariably suffers from cross contamination with other such grains. It gives elasticity to the dough, helping it keep its shape and And it is found in, well almost everything and I mean EVERYTHING!! I never knew it was all invasive till I had to list down foods that did not have gluten.

All the breads, pastas, noodles, Maggi, cakes, desserts, all the kinds of Indian breads like naans, rotis, wafers, biscuits and a host of other child friendly and convenient foods were a complete NO NO. The positive things about this was that a) it automatically made me look for healthier alternatives and more home cooked foods without high levels preservatives, sugar, fats and salt b) my daughter did not have coeliac disease which is an autoimmune disorder affecting the small intestine which has reduced inability to absorb nutrients from the food and only a COMPLETELY Gluten free diet helps. In fact, I had not even heard of this condition till I started to find out more about gluten free diet. Even now I have heard of just once child having this condition which is still comparatively rare in India. For a person having Coeliac disease, even a very small exposure can lead to seizures, osteoporasis and growth issues in children. In my daughter’s case I did not have to worry so much about cross contamination in the kitchen or the dust from wheat, maida (refined wheat flour) affecting her health since it did not affect her to that extent.

We never truly realise what we have till we have till we have to live without it

However, food was to become a huge challenge for us. I changed our flour options from wheat to others like jowar (sorghum), bajra (pearl millet), ragi (finger millet) but not completely successfully. For a child who is accustomed to the taste of wheat, it is a HUGE change.And it is definitely easier said than done. I started making pancakes, chapatis (a type of Indian bread) out of jowar, unsuccessfully tried to give her other food options made of ragi and bajra. She just didn’t like the taste. Luckily, a diet followed predominantly in southern India is made of rice and includes dosas, idlis and uttapams (a kind of crepe, a steamed preparation and a kind of pancake with toppings respectively) and which my children love. Also since one major staple food is rice for us (especially true for Bengalis like for me from the eastern part of India), I started giving a lot of snacks made out of rice for her school lunches and the like.

Variety is the spice of life

True to my nature, I did some more research and found out gluten free recipes through some amazing blogs and websites like www.glutenfreeconfessions.com and glutenfreegoddess.blogspot.in (the first one is my favourite one). They helped me get started on a journey which was different from any other. I learned to appreciate how difficult it is for people who are on restricted diets. I also made sure that for most parts, my whole family followed the same diet as my daughter. I also figured out ready mix gluten free products which were available in India and how to get them if they were not. This opened up a lot more options for us which were also tastier and convenient as a whole. I got bread, pancakes and other flour mixes from Orgran, Pamela’s products and Bob’s Red Mill, Schar from various places. Orgran as a brand was the only one readily available in Mumbai at that time. ( There are of course many more such brands available world wide to cater to a vast segment but I have not used any of those other brands.) But thankfully things have changed for the better in the last year and a lot more products are now available in India both offline and online. I am listing some of the products and their availability in our country-

  • Orgran Gluten free products – Foodhall at Phoenix Mills, Godrej Natures Basket in Mumbai
  • Bob’s Red Mill Natural Foods– Foodhall at Phoenix Mills
  • Bob’s Red Mill, Schar and Orgran products are also available on websites like http://www.healthyworld.in/,  http://www.gourmetco.in/ and http://www.foodesto.com/ which deliver all over India
  • Pamela’s Products are not available in India, I had to arrange for them from US

orgran

schar

I have used all of the above mentioned products apart Bob’s Red Mill. My favourite was the bread mix from Pamela’s Product which turned out quite close to a regular bread and almost as tasty. For someone like me who has never had to bake bread in her life, the end result was pretty decent as compared to when I was trying to make the same from scratch. However, I did manage to bake bread, cake and the likes from scratch using gluten free ingredients with mixed results. I would like to also list the ingredients that are available incase you are willing to try your hand at this as well-

  • Zero G – An Indian brand which has products like potato starch, corn starch ( not corn flour), GF atta and maida mix for rotis etc and other basic GF grains like sorghum etc. It is available in large grocery stores and online in the websites mentioned earlier

zero g

  • Conscious Foods– another brand which has all kids of organic GF grains and flours like bajra, ragi, jowar etc
  • Bob’s Red MillGuar gum and Xanthan gum powder, both of which are essential to emulate the binding property of gluten in regular foods

A child’s dilemma

However, the most difficult part was to ask a 7-year-old to stop having what she had been used to eating so far and it was worse when she had to attend birthday parties and other social events. I had to prepare her mentally and then send some homemade cakes and even other foods so that she could eat something at the birthday parties. In most cases, I spoke to the hostess and asked them to have a couple of options for Aiyana if possible (and even had to refrain from sending her to a few of them).  Also in India, since these kinds of allergies are uncommon, there are hardly any options in terms of restaurant foods, bakeries and at social events (apart from the South Indian variety). It was a difficult time, but she knew that she was not supposed to eat a wide range of food and she did refrain from eating them. I started baking a lot more at home and even managed to make, cupcakes, muffins etc for her with the help of some of baking mixes which I sourced. Luckily for a mother like me, there are a lot of like-minded people in the world who have shared their gluten free recipes and other ideas which really helped us to adjust to this challenging diet.

kites

And finally, a kite rises highest against the wind, not with it

And so it is with my daughter. While I would certainly not wish for her or anyone else to go through these challenges which seem to cross her path ever so often, most of the times we do not have a choice but to face them head on. While my daughter has been put back on a regular diet from June this year, the 11 months or so when she had to follow this diet was a difficult time for her since it added to the challenges she faced already due to her severe eczema.

But I can already see the strength in her which helps her to lead as normal a life as possible and her will power which has increased by leaps and bounds in the past year or so.

I know now the she has the strength to not only rise against the wind but to soar to dizzying heights …

When the going (eczema) gets tough…..(part 1)

IMG_0414

Aiyana and Shaunak in Goa

After Aiyana’s (and our) experience with Erythroderma in September 2012 we decided to take a much needed vacation. We ( Sudip and I, my mother and the kids) went for a one week holiday to Goa during the children’s Diwali break in November 2012. Goa is a small state in India on the Western coastline known as the Konkan region and is famed for its silvery beaches and is visited by tourists from all over the world. While we had a good time overall, her skin condition was just kept under control with oral steroids and immunosuppressants. Due to this reason, as a family we had decided to keep her away and stay away from the sea water and the swimming pool (the chlorine in the water tends to irritate sensitive skin).

Also, since Aiyana had been kept on a gluten free diet after her Ige ( blood allergy test) test had come positive to wheat allergen, it did pose some challenges as far as the food was concerned.  In order to manage her dietary restrictions, I had figured out the alternative food choices and some good gluten free products like Orgran and Bob’s Mill which are available in Mumbai (I wil be writing more on this in a separate post) . The hotel that we were staying in were also extremely helpful in catering to our special dietary needs and used to make us special gluten free parathas/rotis etc from the mix that I had taken with me. Overall I think we managed pretty well considering that in India dietary needs like gluten free/nut free/diabetic/allergy specific diets are not usually catered to in most places yet due to various reasons. As far as gluten allergy (foods containing gluten includes wheat or atta, maida, barley, malt, semolina or sooji) is concerned, it is quite uncommon in India and most people are not well versed with the specifics of this diet.

Under the influence of oral steroids (which we had started tapering) and after introducing an immunosuppressant (Cyclosporin)in September, her skin was much better overall. Itching however never completely went away.  The drug dosage was increased very slowly to the optimum level (depending on her weight) since the doctors did not want to take a chance with any adverse  reaction. With a powerful drug like Cyclosporin, it is imperative to monitor the effects ( increased blood pressure and reduced kidney function amongst others) of the drug on a regular basis. Hence, weekly blood tests were carried out initially after which it was carried out fortnightly and then monthly towards the end. I don’t know which was more traumatic for Aiyana, the skin condition or the blood tests.. This constant monitoring which is required made it difficult for Aiyana to go through with this treatment, but there was no option as such.

After consulting a Mumbai based senior pediatric dermatologist, we also started narrow band UV (ultra violet) treatment or phototherapy for her in November 2012. It is a type of treatment for adults and children with moderate to severe atopic dermatitis (also used for psoriasis) who have not responded well to other eczema treatments. Exposing the skin to UV light suppresses overactive skin immune system cells that cause inflammation and hence can control itching and rashes. The benefits of using phototherapy are that these therapies often work when other eczema treatments have not, and if done properly in a controlled environment and under supervision they can actually have fewer side effects than many of the prescription medicines used for eczema. In Aiyana’s case, her doctors wanted to eventually stop all oral medications and control her eczema with the help of narrow band UV therapy only.

Narrow band UV booth used for phototherapy

Narrow band UV booth used for phototherapy

So, while Phototherapy treatment continued, oral steroids was stopped completely in December 2012 and Cyclosporin (immunosuppressant) was stopped in February 2013. Her skin was overall in a good condition till the time that these medications were being given to her. Phototherapy treatment,  which had been started earlier was then continued as the solo treatment for her till April 2013. Phototherapy as a treatment did not prove to be very effective for Aiyana and her skin condition started relapsing  once again in April and within a few days became extremely dry, scaly and itchy. No amount of topical applications and moisturizers helped to control the same and Aiyana had to be once again put on oral steroids from mid April to stop it from deteriorating any further.

The good thing was that we had already planned for and arranged a trip end of April to meet a well known pediatric dermatologist in Great Ormond Street Hospital for Children and a pediatric allergy specialist in London. We came back to India and started her new medication at the end of May 2013 (I will write about our experience in Part 2 of  this post a lot happened after we came back and it might be an important lesson for parents using immunosuppressant for their child ) .While the results were not exactly what we had hoped for it did clear up some doubts as far as her allergies were concerned. The pediatric allergy specialist did a much more accurate (and painless) scratch test and patch test for her allergies and we were then able to include most of the foods back in her diet barring tree nuts (walnuts, hazelnut, peanut etc).

However, things were to become much worse for us before we got it back under control. There are so many things I wish I could have done differently for her if only I had known what was about to happen. But that is only wishful thinking on my part since it is only in hindsight that we have the perfect vision!

But what I do know is that we all do what we can for our children and that I will never give up finding the best possible treatments and course of action for my daughter. She is such a brave little girl who needs all my love, strength and support to see her through this difficult phase in life.