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!
Yes, I am one of the people they are talking about who are most at-risk from the virus.
And yes, the virus is spreading around DC. (What? You thought we would be exempt for some reason? Yeah, right. Remember the President HATES us! DC would be last on the list for prophylactic measures he would pay for, I’m sure!)
I got back from my medical appointment this afternoon to a phone call from my allergist — which in itself was a little surprising, it being mid-afternoon and all. She said that they had a major meeting of the medical faculty at noon because of the virus (the minister of a major DC church was in the GW ER yesterday and yes, he’s got it). That sped up their planning and alternatives for special-care patients (like me).
She said they realized the odds that they would be quarantined themselves had gotten moved forward — to, like, this week maybe. And for patients like me, who depend on biologics being administered on a strict schedule, that meant they needed a new battle plan.
Xolair, the biologic I’ve been on since 2012 and which addresses my severe allergies — I could go for weeks without it. Not great, but it won’t potentially have a fatal impact.
But that’s not the case with my miracle drug, Fasenra. Even being late on that is concerning (and there’s a whole ‘nother dramedy I’ll write about tomorrow on that subject). In fact, before I began taking it, Astra Zeneca, the manufacturer, sent me an entire notebook with detailed information, which boiled down to:
1. This ain’t like nothing else you’ve ever taken.
2. You MUST NOT MISS A DOSE! In fact, YOU MUST NOT BE LATE WITH A DOSE! If you are traveling and are delayed, let us know and we will arrange to get it to you wherever you are!
3. There’s no cure. You will probably be on this the rest of your life.
(I swear, the notebook was about 1/2-inch thick and that’s what it boiled down to. Wish they would have paid ME to write it for them and let me keep the rest of the production budget!)
So every eight weeks, I trek down and they give me the injection. But it’s not something that just any doctor or nurse will administer. In fact, at GW, ONLY the Asthma & Allergy Clinic will administer biologics. Not pulmonology. I don’t think oncology even does. Anyway, if they close it down — quarantine the clinic or MFA — then what do I do?
My doctor proactively figured it out. Luckily Astra Zeneca had already created a “pen” dispensation system (like with insulin) and gotten FDA approval for patient-self injection!
Yippee!
So calls to my insurer (check), specialty pharmacy (double-check), specialty pharmacy’s delivery company (triple-check). All my allergist has to do is write the new scrip and the next order will, if necessary, be for a pen version and shipped directly to my apartment.
New research in Austria suggests that it just might. In an article in Medical News Today, published August 5, 2019, “Could the use of stomach acid drugs raise the risk of allergies?” Catharine Paddock PhD (fact checked by by Jasmin Collier) says that “New research finds a link between PPIs and the risk of allergies. Due to the study’s design, the results do not prove that gastric acid reducers — such as proton pump inhibitors (PPIs) — actually cause allergies.”
In a Nature Communications paper about their work, however, the authors suggest that the findings “infer” an increased risk of allergy.
The data for the study came from health insurance records that cover around 8.2 million people living in Austria. This number represents 97% of the Austrian population.
A team from the Medical University of Vienna (MedUni Vienna) in Austria used the epidemiological data to analyze the use of anti-allergy drugs following the use of prescription medications that reduce stomach acid.
As the data came from insurance claims, the team did not analyze actual incidence of allergies, instead using patterns of prescription anti-allergy medications as stand-ins.
The analysis showed that following prescriptions for stomach acid inhibitors, the use of prescription anti-allergy drugs was higher compared with other types of drug.
According to the findings, it appears that people who took stomach acid medications such as PPIs had a two-to-three times higher chance of later receiving prescriptions for anti-allergy drugs.
Gastric acid and PPIs
Doctors prescribe PPIs to treat various gastric acid conditions, such as gastroesophageal reflux disease. This occurs when acid from the stomach flows backward into the esophagus, or the pipe along which food travels.
Estimates suggest that more than 15 million people received PPI medications in the United States in 2013.
The researchers note that gastric acid is vital for food digestion. The acid contains enzymes that break down proteins before they undergo further processing.
Gastric acid also protects the digestive system from infection by bacteria and other disease causing agents.
Reducing the production of gastric acid could increase opportunities for allergy causing substances to enter the gut unchallenged. Such an influx has the potential to trigger or worsen an allergy.
Do not use PPIs ‘longer than necessary’
Principal investigator Erika Jensen-Jarolim, of the Institute of Pathophysiology and Allergy Research at MedUni Vienna, cautions people not to use gastric acid inhibitors “any longer than necessary.”
“They prevent protein digestion, change the microbiome in the gastrointestinal tract, and increase the risk of allergic reactions,” she adds.
Prof. Saad Shakir, director of the Drug Safety Research Unit in the United Kingdom, describes the research as “hypothesis testing.” He was not involved in the study.
He agrees that PPIs and other stomach acid suppressors can weaken the defense mechanism that normally prevents many substances traveling farther than the stomach.
He suggests that using prescriptions as surrogate markers for allergy diagnoses “is a reasonable approximation.”
Prof. Shakir concludes that although the study does not answer the question for sure, “it strengthens the hypothesis regarding the association between taking acid suppressants and the development of allergic symptoms.”
This week was the first anniversary of my treatment with Fasenra, my miracle biologic drug. My severe asthma had been increasingly triggered by eosinophils, special white blood cells my bone marrow had made in great excess and that were attacking — and destroying — parts of my body. Fasenra has stopped the production of the eosinophils completely. No asthma in a year. No more e-emphysema. And completely unforeseen reductions in numerous other medical conditions, probably related to the elimination of the eos-fueled inflammation. For the first time in a decade, I wake every day feeling a little better, a little bit stronger. No cure — no reversal of the damage. But I think it’s the closest I’ll ever come to a miracle.
Today is my first anniversary …
No asthma.
No eosinophils flooding my blood …
Attacking my lungs and other organs.
None. Zip. Zero. Nada.
In some ways, it’s been a little hard to believe.
In September 2012, I began treatment with my first biologic, Xolair, for severe allergies. Ever since the toxic mold exposure in the mid-’90s, my allergies were less responsive to medications. Allergy shots had never helped much. But it was the increasing severity and length of the asthma attacks triggered by allergies that were most concerning.
I got into a Xolair trial and slowly, we saw improvement. By the next spring, I realized that some of my early spring allergies to trees around DC were less severe. And that continued to be the case, season after season.
After a couple of years, we realized my allergy-triggered asthma had been reduced to a few times a year instead of every couple of months. Then one day, I was complaining about nosebleeds, and my allergist said, “Maybe you should stop the daily Zyrtec.” That had never even crossed my mind. Purposely skip Zyrtec? Huh. Okayyyy.
Xolair and sugar snap peas
So I did. And what do you know? I didn’t need it for months at a time. I had to restart it for this past spring, but expect to be able to stop it by August. (I’ve been allergic to peas all my life, but accidentally ate some sugar snap peas recently, thinking they were some sort of green bean – except as sweet as candy! No reaction, but promised Dr. VL I won’t go out of my way to eat anymore. Interesting, and at least I won’t have to immediately take Benedryl if a single stray green pea slips past in a bite of a casserole.)
Taking the allergy-triggers out of my asthma equation was one thing.
The infection-trigger is huge – and the only way to really beat that is to stay away from crowds and potential sources of infection. The reality is I have a crappy immune system. All the steroids have undermined whatever natural immune resilience I ever had. Since I no longer can work, and rarely travel on mass transit during peak times, I’m much less likely to be exposed.
I get my flu shots as soon as they are available in the community, and every other vaccination possible. And I don’t travel during peak holiday seasons. When I do travel, I wear a mask and disposable gloves. I wipe the tray table, handles on luggage, doors, even seat covers, and armrests with rubbing alcohol wipes.
Avoiding carriers like they have plague
The big thing is controlling my exposure, frequently secondary, through friends or family members who don’t understand that when I say I have to stay away from anyone who might be gettingsick or carrying germs from someone else, I mean that literally.
People are so accustomed to ignoring the sniffles and constant colds of children, for instance, or their own colds, that they don’t realize that the common cold is a potentially deadly trigger of acute asthma attacks, especially in the autumn and winter. Luckily, I’ve managed to keep from being infected the past couple of years (but not without causing some hard feelings, I’m afraid).
So we’d made progress with allergic and infection triggers. Exercise can be a trigger – so I’m careful and use my rescue inhaler before any, and am prepared for more. Unlike most asthmatics, I have never been cold-weather triggered – in fact, for me it’s the opposite! I am triggered by heat and humidity, but always feel much better when it’s very cold. I think part of it is because there’s no pollen or mold outdoors then, and I avoid indoor areas where there might be any mold or mildew. But for whatever reason, my lungs feel great during snowy winters.
But there seemed to be something else, something we didn’t recognize, triggering my asthma attacks. And they were getting much worse. And coming a lot faster.
Learning what eos was destroying
Atypical Hypereosinophilic Syndrome is a rare blood condition, characterized by extremely high levels of eosinophils in the blood. (Try saying it quickly, much less spelling it, and you’ll get why we call the cells “eos” and the condition “HES.”) Eos, the special white blood cells my body decided to use to attack itself, also is a major complication for my severe asthma, and now has caused me to develop emphysema as well.
From the first diagnosis in 2012 until last year, we knew my HES was bad, that it was attacking parts of my body instead of the usual parasites or cancer. But not what it was attacking. Until last summer, when we found that the eos had irreparably damaged my lungs. I’d known that was a strong possibility. Still, my reaction was to want to drive my foot through the wall, or pitch an all-out, full-bore hissy fit. I refrained. But it was a close call. Because there’s no way to repair the cells killed by eos.
I watched my grandfather die of emphysema in the 1970s, slowly and in great pain. It’s still a horrific way to die even though treatments have improved. But I guarantee it won’t be the way I die.
As a result, finding something to stop the production of eos was critical, every bit as critical as stopping the asthma attacks.
The biologic duo
First, we had tried adding Nucala. That combo helped prevent asthma for nine months but did nothing to reduce the eos. And it also allowed the zoster virus (leftover from childhood chicken pox) to trigger corneal ulcers that took more than four months to heal.
So the Nucala was stopped. While we waited for it to clear my body, I discussed Fasenra with my various specialists. The only one who was enthusiastic was my hematologist-oncologist. He said he and his colleagues were used to trying scary new drugs as last resorts – an approach I related to.
Four others were cautious about it, a little nervous about the gamble. My allergist was the one I really needed to persuade. Ultimately I did, by telling her that I was willing to try it for three months, the initial treatment period, and if we didn’t see at least a 25% reduction in eos, I’d stop it and I’d go back to Nucala, even if it meant a loss of my eyesight. (Breathing tops Sight, in the Alves Hierarchy of Needs.)
So we added Fasenra to my Xolair injections, a doubling of biologics (at the recommendation of the NIH/global expert on HES, Dr. Amy Klion). And we watched and waited.
A year ago today was the first injection.
N0w biologics are the drugs you take when you are gambling your life … because that’s what you are doing.
They are last-ditch drugs. Cutting-edge science has thrown out the old formulas for creating drugs to treat some of the most intransigent conditions, like the most severe forms of asthma. But the trade-off is that at any time you can have an anaphylactic reaction, usually fatal.
AT.ANY.TIME. FATAL.
It also is unbelievably expensive, although the price has fallen considerably in the past 18 months, to about $60,000/year now.
If Fasenra hadn’t worked, there was nothing else for me to try.
Zeroing out eos
That first injection was followed with a blood test a week later. We hoped my eos level would have dropped by 25%. It was zero. We thought it was a strange fluke. Next month, also zero. And I was slowly starting to feel better, a little stronger.
Third month, third zero. We were stunned but thought maybe it would rebound when the maintenance dosage dropped. Except it didn’t. Every blood test, every time, has been zero.
Photo by Yuiizaa September on Unsplash
In January of this year, although I needed a lot of help before, during and after I had a small dinner party for my brother Bill when he visited. It had been years since I’d been able to do something that I once enjoyed doing so much. I created a special Mexican mole for him (Bill has his own food allergies, just luckily not so bad) and my DC family. Seeing them all talking and laughing around my table, eating off my grandmother’s china – that was something I had thought I’d never be able to do again.
It took a lot of planning, early preparations and a week+ of recovery. But I was gaining strength so quickly that by my May birthday, my physical therapist (the incredible Joe S.) agreed to let me have the summer off PT, to try on my own.
Every single day for the past year I have woken up feeling a little better. Not jump-out-of-bed-and-run-a-marathon better. Still, I’m recalling what it felt like to wake up in the morning and look forward to accomplishing something during the day. And not wake bracing myself for a day of clenching my jaw and bracing for exhaustion and pain.
To dance at a November wedding
It’s been many years since I’ve been able to dance. But a dear friend is marrying in November, and I’m hoping to be able to dance at her wedding. To a slow song, with a strong partner’s arm around me. But to DANCE!
So thanks, Fasenra and Xolair! Keep it up and I’ll post a photo of me dancing at the wedding.
In the meantime, let’s hear it for researchers who try a new approach, doctors who sometimes take a calculated risk, and to the family and friends who stand with me cheering!
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.
Today is my first anniversary …
