New toolkit for eosinophilic asthma (eos-asthma)

APFED, the American Partnership for Eosinophilic Disorders, https://apfed.org/ and the Allergy & Asthma Network https://allergyasthmanetwork.org/ have developed a terrific starter kit for those who have recently been diagnosed with eosinophilic asthma, commonly known as eos-asthma or e-asthma. Wish it had been around three years ago, but hey — at least it’s available now.

Available at https://eosasthma.org/ it explains about the diagnosis and how e-asthma differs from the more common types of  asthma, how treatments may vary, and how to find specialists with experience in treating the diseases.

Also included is information on the research on new treatments, and even tips on how to obtain assistance affording the most expensive medications, and advice for parents about working with their children’s schools.

As someone who has at times struggled to explain my diagnoses (and all that led up to finally getting the diagnosis — 20+ years of misdiagnoses and medical errors) to family and friends (and a part of why I started this blog/website), I am thrilled that my friends at APFED (a wonderful organization that is a tremendous source of information, assistance and referrals) have committed to this.

If you, or someone you know, has been told you have eosinophilic asthma (and I understand how hard it is to learn to pronounce that, much less understand what it is — why do you think we call it “eos” or “e”?) — start with this eos-asthma.org https://eosasthma.org/  website (and this one, I hope).

And send me a comment or question.  I’ll do my best to help!

Three years of a slow blossoming miracle …

Or so it seems to me.

Three years and one month ago this week, the last week of June 2018, I began taking the last biologic medication available for my HyperEosinophilic Syndrome (HES) and the severe, almost impossible to control, asthma it triggered, or the emphysema it had caused.

There were no drugs left in the medicine cabinet for me. If this one, called benralizumab or Fasenra, didn’t work … well, the eosinophils (the special white blood cells) would continue their crazy over-production and go right on destroying my organs instead of fighting infections or parasites.  Until they finished destroying me.  There wasn’t much fight left in me after all these years (more than 20 before it became really serious, and more than 30 since I had known there was something wrong, but no doctor could diagnose it).

In 2018, the doctor I was closest to, the allergist who had saved my life so far and figured all this insanity out over the previous six years, was worried.  Dr. VL was concerned that I would have one of the sudden fatal reactions to the medication.

I had read everything I could find on the medication, including on adverse reactions.  My close friend, a physician and pharmaceutical researcher,  evaluated it.   My hematologist-oncologist also went through the literature.  I asked all my other doctors to weigh in.

But ultimately, it was my choice.

I told Dr. VL I was ready to gamble.  My HES and the related problems it caused were so severe that any improvement in my quality of life was worth risking death from anaphylaxis or other major side effects.

I had virtually no quality of life left.  I only could see managing a few more battles, certainly not another war.  There also wasn’t much incentive to keep struggling, while I only  continued to experience so much pain and disability.

The initial therapy was one injection per month for three months.  I told her that I wanted to try it and if, at the end of the three months, my eos level was not improved by at least 25%, or  if I developed severe side effects at any time that outweighed any benefits during the course, I would immediately stop it.

If I did show improvement after that first 90 days, I’d go on a maintenance dosage of one injection every eight weeks … for the rest of my life, however long that may be.

But I was one of the few patients for whom it worked perfectly.  Within 10 days of the first injection, my eos level was zero — normal, and it has remained there ever since.

THREE YEARS OF ZERO EOS!

And not only has my asthma improved, but many of the other problems that constrained every aspect of my life have gradually been improving, too.

There is no cure.  There is always a chance the drug will stop working.  Or that I will suddenly have a deadly reaction to it, without warning.

It’s also possible that Medicare will stop covering this obscenely expensive medication, or that it will interact negatively with something else.

But for now, all I can say is:

THANK YOU, ASTRAZENECA! 

And thank you to all the researchers and all the patients who volunteered to participate in studies to make drugs like this possible for patients like me.

(BTW, I say thanks by participating in pretty much every study I’m asked to, and will for the rest of my life.  I speak to medical students, and work with residents and interns and fellows, hoping they learn from treating me.  And when I die, George Washington University physicians and the medical school will get what’s left to see what else they can learn — as partial thanks for taking such great care of me these past 20 years.)

Coping with food allergies

The Asthma and Allergy Foundation of America has published the results of a new study

I can’t remember not having allergies to foods. My mother says they began immediately, when “normal” formulas with dairy made me ill so I was put on soy. (I hated that soy so much I can still remember the taste and to this day will not even try soy milk or other such products  – YEEYUCKKK!) But  colic, rashes, vomiting can be pretty persuasive for food allergy diagnosis.

I learned early, though, how good dairy tasted.  My mother’s father, who would babysit me, was always convinced he knew better than anyone else. He believed allergies were nonsense and some cheese or milk couldn’t hurt me.  So he’d give me bits of cheese from his sandwiches as I played on the floor nearby.  And I would soon begin to “get sick” – hives, rashes, crying, stomach ache.  All too often, by the time Mom got there from work, the allergic reactions had turned into asthma (although he never admitted to a connection between the foods and the reaction).

It didn’t take long for me to make the connection between being so sick and the foods I craved.  I didn’t understand why everyone else could eat ice cream, but I had to have popsicles or non-dairy sherbet.  Why everyone else at a party could eat pizza, but if I did, I’d be sick all night and likely  for days afterward.

I couldn’t eat oranges! Just the release of the citrus oil from the skin of an orange being cut or peeled 1500 feet away – the opposite end of a large house – would cause sneezing, watery eyes.  And within just a few minutes (despite staying at the other end of the house), I’d have a small rash on my skin and the inside of my mouth would feel like it had been filled with blisters.  Benedryl, here I come.

And those were just the highlights.  It has often felt like it would  be easier to list what I could eat, instead of everything I was allergic to, or had bad reactions to.

But over the years I learned all sorts of ways to cope.

There were the safe foods – no reaction, at least so far.  Reactions are not in a steady-state; they can change slowly, evolve, sometimes suddenly just stop.  And new ones start.

Problematic foods – those which I can have a small amount of, if I am not sick or running any worrying symptoms (like peak flows decreasing, other allergic symptoms causing problems, any infections…).  I can eat oranges now, in small amounts.

And Hell No foods – the ones that have caused severe reactions or anaphylaxis in the past, or that are related to foods that have triggered severe reactions.

I learned to adapt recipes, initially from my mother, then by studying cookbooks and learning how to exchange certain ingredients.  But I also learned how to avoid things.  For a while, oranges were a no-no, so I didn’t even buy them. I could eat peanuts and pecans as a child, but in my 20s I developed severe reactions to peanuts and most tree nuts (but oddly, not almonds that have been blanched.)  I’ve been allergic to peas since childhood, but just a few weeks ago was served some sugar snap peas (I thought they were a different sort of green beans).  No reaction – probably because of the Xolair (but I’ve promised my allergist I will not seek them out).  I learned to read ingredient labels compulsively when I was younger, and am careful about new, processed foods.

Now I’m allergic to most legumes – peas, chickpeas, peanuts, lentils are out.  But I can eat most kinds of beans, which are also legumes. Go figure.

Restaurants are rarely a problem, but they can be a serious one – sometimes chefs or waiters are careless.  And there is nothing like having an anaphylactic reaction to spoil a nice dinner.  Or ruin a promising new relationship.

Food Allergies and the Emotional, Social and Financial Impact

 

Learning to manage asthma and allergies as a child or an adult

 

US House introduces School-based Allergies and Asthma Management Program Act

The Asthma and Allergy Foundation of America  (AAFA) sent out this notice today:

The School-Based Allergies and Asthma Management Program Act (H.R. 2468) was introduced on May 2, 2019, in the U.S. House of Representatives, by House Majority Leader Steny H. Hoyer (D-MD) and Representative Dr. Phil Roe (R-TN). This bill was created to amend the Public Health Service Act. According to this act, states that require public schools to have asthma and allergy management programs would get preference for certain grants.

Schools will have a better chance of receiving grants if they have a comprehensive school-based asthma and allergy management program. The program would have to include:

      • Methods to identify all students who have allergies or asthma
      • Individual student action plans
      • Education for school staff
      • Efforts to reduce environmental triggers
      • Support for families managing asthma and allergies

Schools must also have a school nurse or trained staff on site during operating hours to give medicines for both asthma and allergies.

A state can decide to not put this type of program in place. But the hope is that this bill will motivate states to pass these laws so they can get better access to grant money. These measures will help schools take better care of students with asthma and allergies. It also raises awareness that asthma needs treatment just like allergies. It will result in healthier and more productive students.

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