My outer layer

This is a story about my outer layer. My skin. I have psoriasis. I have had psoriasis for close to 10 years now. For 5 of those years I have been in denial, and depressed about this loss of my pristine outer layer.

What is Psoriasis? For wikipedia on Psoriasis click here.

Image Source: http://www.interesticle.com/celebs/these-celebs-tried-a-psoriasis-treatment-you-wont-believe-what-happened-next/

Then about a year ago things started to get worrying. I was red, and patchy. My UV treatment was not working all that well. It wasn’t clearing me up anymore. And I had become completely reliant on creams. When it was suggested I get onto a medical trail for a new experimental drug I jumped at the chance. I was looking at potentially getting an injection periodically and would no longer have any skin issues. Or so went the promise.

I went through the process of signing up for the trial. I was going to the hospital and was very excited by all the new stuff I was learning and the new experiences I was encountering. I have to admit I was loving being a mild form of lab rat. Then one day I got a phone call as I was driving home. There was an issue. There was a possibility I had Tuberculosis. It was pretty shocking to get this news. Or ought to have been. Luckily by this I am 54 years old and have reached a point in my life when I am venturing information about myself to others. So in a phone call to Pramod in India I mention the TB result. He is dismissive and says that almost all Indians have latent TB. I suddenly acquire a different perspective, and am instantly relieved. I promise myself that everyone would begin to hear about my body malfunctions and contaminations. I made a note to write this piece. That was 7 months ago – this post has been long overdue.

Soon I would go in for another verification blood test. It confirms that I indeed have latent Tuberculosis. Rapidly after that I am off the psoriasis biologicals trial, return the journal device and am now onto a new treatment. And a new trial. For more information on Psoriasis pharmaceuticals trails see pages like these. Plus for information about medical trials in Australia see here.

Now for my TB treatment. The infectious diseases unit, where I go for my appointments is up on the top floor, a forgotten level, of the hospital. A fitting locale where exotic people go to seek treatment for exotic emerging country diseases. I soon discover that there is a trial underway here too. This one is different, its an economic viability trial, for a new more expensive drug for TB. I agree and sign up for the trial. As part of the process of randomization for the trial I will receive either the existing drug Isoniazid (three tablets a day for nine months) or this new drug (fewer pills and for just three months). The decision of which trial I get will be decided by the computer. Given my current luck of course the computer decides I get the Isoniazid treatment. For more information about Orphan Drugs and economic viability click here. (As the site says – ‘rare diseases are rare’)

I start taking isoniazid and notice a dramatic reduction of my psoriasis. Have I then discovered a treatment for psoriasis? I go online and find others who report similar outcomes. There is also a pubmed post about a treatment where you powder isoniazid and apply it topically with a cream base to the skin. Could this be true? My TB doctor contends the anti-inflamatory effect of isoniazid could be doing the treatment. I have three more months of the isoniazid to go. The big question for me is – what will happen after I finish my isoniazid treatment?

For now I am self-managing my Psoriasis with decent results. I follow the Pagano Diet – and in this I do two things. I avoid ‘night shade vegetables‘, and I drink saffron tea. I also have a food chart – more like how I police what I consume – Sam’s Pso-Diet Chart. I am not that strict about my diet.

I avoid sugar.

I have a salt bath, soak is the right word for this, every day. The salt for the bath is made up of Sea Salt+Epsom Salt+Bi-Carb Soda in the proportions of 6:3:1.

What makes it possible for me not to get depressed about my Psoriasis? I talk about it now, and I am signed up to two online forums. I get an email from #1 every day – and I flick through it most days.

  1. The National Psoriasis Foundation: www.inspire.com/
  2. Patients like me: www.patientslikeme.com

My next thing to try is a lotion of Apple Cider Vinegar (ACV) and glycerine.

Published by

Soumitri Varadarajan

Soumitri lives in Melbourne, Australia - #probonodesign #codesign #sustainability #patientexperience #quantifiedself #mdg

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