Five minutes into yoga class, my sixteen year old daughter Hannah blacked out. Her face, white as a ghost. When she came to, she said she couldn’t see. Her pulse was almost nothing, and panic set in. I ran to my car to grab my phone and dial the infectious disease doctor Hannah had recently seen about an allergic reaction to a commonly prescribed antibiotic acne drug Minocycline traded under the name Solodyn.
The voice on the line said the doctor was with a patient. “He can call you back in twenty minutes.”
I wasn’t going to wait. As I pulled into the parking lot, my cell rang. It was the doctor. I felt a sense of relief and started telling him the details. “We were in yoga class, and she just blacked out.”
The Doctor sounded annoyed: “Look, I am not concerned. Hannah will be fine.”
“With all due respect, doctor, she blacked out cold for a significant amount of time. She looks completely white. We were doing yoga!”
Before I finished, he interrupted. “I’m not concerned with what you’re telling me. Just take a break from the yoga. She is fine.”
I wanted to scream at him, but Hannah was so sick. I thought, This guy has issues with women, or maybe he’s… fuck it.
“Well, I’ll let Hannah speak to you then,” I said and handed her the phone. Maybe he would believe her. Hannah told him what had happened. I put my ear to the phone.
“Hey look, I think you’re just having anxiety,” he said, his tone at least gentler, if still patronizing. “Don’t do any more yoga. I’ll see you next Tuesday for your appointment.”
We were in shock. The whole thing seemed weird. Our emergency was reduced to a fit of anxiety. It didn’t feel right.
Hannah seemed to be feeling better and asked for a smoothie. We spent the next few days watching movies, staying mellow. That Friday, she felt terrible. I dialed the doctor again and left a message. His nurse returned my call instead of him, and I blew up.
“What makes the doctor so confident? Hannah is getting worse. When we were in crisis the other day, he was condescending. He acted annoyed. If he ever treats me like that again, in front of my daughter, in an emergency situation, we will have a huge problem. I’m not comfortable seeing him, but I need his care for Hannah right now.”
Medical facial please
Ok, lets back up. It’s February 2011, and Hannah and I are awaiting her first appt. with a “Stanford-trained, board-certified dermatologist” with a skincare institute. She wanted to begin regular medical facials. The doctor asked Hannah questions and examined her skin. He discussed the facials and insurance and then prescribed a topical cream. Hannah’s appointment seemed a wrap, but then he asked about a few more things. Before we knew it, we had a prescription for an acne drug. I jumped in and told him we didn’t take medications except in extreme situations. I told him that my husband taught chemistry and was adamantly against unnecessary medications, especially antibiotics.
The doctor smiled when I told him about his long lectures and how we would never hear the end of it. Still, he reassured us of his professional comfort with the medication and how it was absolutely safe. So I asked him if he’d give it to his kid, and he said yes. I could hear the lectures in my head, so I mentioned another acne drug that had caused serious side effects; colon issues and suicidal ideation that I had heard were associated with acne drugs. The doctor smiled kindly, shook his head, and just said no.
Three weeks later at her best friend Maggie’s sleepover, Hannah woke up with golf ball-sized glands behind her neck. She was scared and called, “I wish I had listened when you when you said not to sleep on wet hair. I really feel crappy.”
She felt so uneasy she didn’t take the Minocycline that morning and never took it again. I found a family doctor to see her. We didn’t have one in place, a perk of good health. Neither Hannah nor I told the doctor about the pimple medication. Neither of us had made the connection being several weeks had passed. We showed the doctor Hannah’s giant glands and other swollen areas. “It may be mononucleosis.” Blood work would tell.
A few days later, a full body rash appeared; Hannah had lumps, bumps, and nodules from neck to toe, including her private parts. I called the doctor and started searching for answers online. That’s when I connected the drug and returned to see the doctor insistently that Saturday afternoon. Five minutes in, he said, “Honestly, this is out of my family practice area.” and referred us to an infectious disease doctor, who then quickly diagnosed Hannah as having an allergic reaction to Minocycline.
Excerpts from a letter from Dr. S to Dr. R
History of Present Illness: The patient is a 16 year old Caucasian girl who has enjoyed generally excellent health. Her only significant past medical history was excision of a sebaceous cyst from the medial left knee at about age 12.
Sometime in February 2011, the patient saw Dr. P, dermatologist, who prescribed minocycline to control facial acne. She took the medication as prescribed for 21 doses, and then during the first week of March, she developed an acute illness, initially characterized by the development of posterior cervical lymphadenopathy, which was not tender, associated with fever, malaise, and fatigue. This was followed by the onset of a maculopapular rash, which initially presented on the face and then spread to the trunk and extremities. This rash was pruritic. Her fever only lasted a few days, as did the generalized malaise. Associated with the rash there was pruritis, and the skin seemed swollen in the rash affected areas, especially about the upper and lower extremities.
Ultimately, the patient presented to Dr. R—— for this problem, and a week or so ago, she was prescribed a Medrol Dosepak, which did not significantly improve her symptoms. After about the fourth day of this treatment, she was switched to a tapering dose of prednisone, beginning with 60 mgs daily, of which she has taken her last 60-mg dose today, i.e., the fourth day of prednisone treatment. On this treatment, her rash had somewhat improved, although she is still pruritic and notes some increase in puffiness of the hands and feet. The patient has not developed any new symptoms apart from the puffiness in the last several days.
Discussion: This very pleasant patient does not look toxic or septic. She has some residual rash as described above with perhaps minimal puffiness of the hands and feet. The puffiness may be due to the ongoing prednisone therapy. Okay for almost one month for her acne. As long as she continues to slowly improve, I would not change her current treatment. I think that the syndrome in its entirety is almost certainly due to an adverse reaction; i.e., allergy to Minocycline, which she took, although it is entirely possible that, with further tapering of her prednisone, her rash and possibly other symptoms may recrudesce somewhat. But ultimately symptoms should all resolve over the next few weeks. The patient has been cautioned about the potential for cutaneous hypersensitivity to sun exposure and was instructed to stay out of the sun for the next month or so.
When we got home, Hannah and I ordered a medical bracelet that read, “allergic to all tetracyclines”. When it arrived, it would have brought relief if her current state were not so challenging. Turns out that the first round of 60 milligrams of prednisone taper failed. After her final 20-milligram dose, Hannah’s face swelled up completely. She would have to do another cycle. The doctor wrote a referral for “home hospital” and the second round of prednisone seemed to be working. The doctor kept reassuring us the reaction was on its way out, that it just needed more “undoing.” He promised she would be “100 percent” sometime soon.”
That’s when we decided to take the yoga class and get out a bit. On the way, Hannah said she was having a little chest pain. I asked her if she needed a bathroom, but then the pain stopped. The next day, Hannah wanted to go again. That is when she blacked out.
Just after Hannah’s final taper, she started having trouble breathing.
When the doctor came in, he took one look at her and said, “You look really sick.”
Hannah said, “I am really sick. I can’t breathe and can barely talk.”
She leaned on me, exhausted. The doctor called for an EKG. I held her as we waited. When the EKG came, the doctor took a good look at it and said, “You’re a very sick girl. You’re very sick.”
“Pneumonia?” I asked. “My God, what’s going on?”
He had us wait some more. With the hospital literally next door, he just had us wait. He wanted a blood sample, but Hannah was afraid that, if he drew blood, she’d pass out. She was weak and nauseous, and her chest pain was increasing. She was afraid of throwing up, her chest was in massive pain, and she hadn’t eaten. She was in pain, and he wanted to draw blood.
“I’ll be right back,” he said.
When he returned, in came a strong smell of breakfast burrito. Hannah and I looked at each other. Oh my God…. we’re struggling and he’s eating a breakfast burrito. That’s when he said he was admitting her. We got in the car to drive next door to admitting, but Hannah couldn’t breathe.
I yelled to the parking attendant out front, “Help! Get a wheelchair, a wheelchair!”
When they rolled Hannah to admitting, we began the intake process, but she was getting worse. They took her to emergency, and standing there, I heard the doctor ask to see the EKG. Then, I heard him say, “He didn’t send it! Get me another one.”
Hannah and I locked faces while he read the graph. The doctor turned to me and said, “Ma’am, call your loved ones. Your daughter could die any minute.”
I looked at Hannah with all my love and stepped back out of the room. When we arrived at the emergency room, alarms were sounding. Two nurses were wheeling Hannah into surgery. Her heart had stopped. She was in full cardiac arrest. CPR went on for almost an hour. The hospital representative came out and brought us to private room.
“I’m sorry. We don’t think she’s going to make it.”
We were hysterically crying, huddled in a corner on the floor. About a half hour passed, and the door opened.
“We got a pulse,” a doctor said. Then he told us that he’d surgically implanted an Impella device, adding that it wasn’t the right size for a young girl but seemingly relieved that he’d got it in. “We called for a helicopter to fly her to Cedars-Sinai Medical Center,” he said flatly, before adding, “You can see her briefly now.”
Getting to Cedars
We arrived just minutes before Hannah. We would later find this letter in her admissions paper work.
Ms. Hannah Szakacsy is a sixteen-year-old white female who presented in cardiogenic shock from probable fulminant acute myocarditis.
Following the diagnostic coronary angiogram, the patient required one-to-one physician care for the following six hours, including emergency helicopter medical transport to Cedars-Sinai, a physician at the patient’s side throughout the transport.
She was triggering the ventilator, but she did not have spontaneous movements upon arrival. Lungs were clear. There was urine production. On arrival to Cedars-Sinai, both Dr. C—— and Dr. T—— were at the patient’s bedside within 10 minutes, and the patient was taken immediately to the Cedars-Sinai surgical suite for extracorporeal membrane oxygenation therapy, in preparation for biventricular placement later.
Signed, Dr. P – –
Hannah had arrived with no pulse or heartbeat. A group of doctors came to greet us. One of them told us sternly his eyes more sympathetic than his tone, “It doesn’t look good, but we will try and do what we can.”
“102 days begins”
A team of doctors got Hannah on ECMO (extracorporeal membrane oxygenation), which provides patients oxygen for both cardiac and respiratory support; the chance of the ECMO working is just 50 percent. Hannah had no major organ function; all five major organs were failing. Her legs were turning black due to lack of circulation. She needed open heart surgery.
How could the infectious disease and the dermatologist have missed this? What is this drug! I was focused and furious, but Hannah was dying. I spoke with every doctor and pharmacist at the hospital, no one knew anything. We wrote to Dr. Vincent Descamps in France for help, then photocopied his case studies on DRESS for Hannah’s team of just about 30 doctors.
They were treating symptoms. No one fully understands drug reaction with eosinophilia and systemic symptoms (DRESS) syndrome, even experiencing its magnitude and destruction. Worse, the head of immunology, whom I blasted for sending interns instead of seeing Hannah himself, doesn’t even believe D.R.E.S.S. exists. He revealed this while patronizing me with superficial responses, his lips speaking ten gulps of bullshit. As with Humpty Dumpty, all the king’s horses and all the Queens’s men couldn’t put Hannah together again.
Ultimately, Hannah Victoria Szakacsy, passed 11 times, had fasciotomies flaying open both her legs; two open heart surgeries; and the loss of all her major organs. A BiVAD artificial heart implanted and later removed due to her own heart’s striving for life. She endured hundreds of x-rays, scans, severe starvation, lost her colon and part of her pancreas. I could add more. Hannah was in and out of consciousness, until she ultimately lifted, out of her very heavy weighted body, 102 days later, two weeks after her seventeenth birthday.
Hannah’s medical case was published in the Sage Journal’s Publication ICU Director, May 2012 vol. 3 no. 3 139-143, Journal of Intensive Care. The title read “Minocycline Induced Drug Reaction With Eosinophilia and Systemic Symptoms Syndrome: Myocarditis and Multiple Organ Failure.”
One click and a Google search links me directly to Hannah’s contribution, the fourth published case. This is an astonishing success, until you realize the entire text is public but can only be accessed for a fee of twenty-five dollars. Is this why DRESS is considered “rare”?
All rare means to me, is that it happened.
Six million dollars were spent trying to save Hannah during those 102 days in the hospital. Very few doctors had even heard of DRESS.
There are many defining explanations on DRESS, but no real guidance for those in the midst of it.
DRESS syndrome stands for Drug Reaction (or Rash) with Eosinophilia and Systemic Symptoms. The term was coined in a 1996 report in an attempt to simplify terminology for a syndrome recognized as early as 1959. DRESS is an immune-mediated reaction to a drug. Also known as drug-induced hypersensitivity syndrome (DHS).
D.R.E.S.S. symptoms occur 12 weeks after initiation of the prescribed drug and can occur after a dose increase or recur for several weeks after stopping the culprit drug.
Hypersensitivity reactions are unpredictable and not dose-dependent, usually occurring at normally tolerated doses.
In June 2010, after a multitude of adverse event reports, the FDA conducted and concluded its own investigation into the widely prescribed acne medication. The study found it could and did in fact cause DRESS, black thyroid, severe lupus, and other autoimmune responses. The FDA then contacted the makers of the drug and had them amend the adverse effects stated on their warning labels. The pharmaceutical company who made Solodyn the brand name version of the drug Hannah took waited until March of the following year to add DRESS—one month before Hannah’s organs failed.
I travelled to France to meet and thank Dr. Descamps. When I returned home, I received this from the kind French doctor.
Here is the “official information about minocycline” given in France by the HAS (Haute Autorité de Santé, High Authority for Health). It is written (in 2010) that minocycline must not be used as a first treatment for acne but only exceptionally.
Translated from French to English:
Tetracyclines (doxycycline 100 mg/day or lymecycline 300 mg/day) orally are particularly indicated in acne predominantly inflammatory (papulopustular) in extensive and/or prolonged forms development and limited to three months of treatment continuously.
Because of the risk of rare but serious adverse effects (hypersensitivity syndrome, hepatitis, autoimmune), it is not recommended to use minocycline in first intention but only exceptionally in case of failure of other cyclins and the inability to use oral isotretinoin.
Minocycline-induced DRESS cases and risk to benefit [is] not worth it for acne treatment when other safer options [exist].
In mid-2008, the French National Pharmacovigilance Committee examined:
- Spontaneous reports of adverse effects observed during tetracycline therapy
- When sales figures are taken into account, reports were more frequent with minocycline than with doxycycline. The proportion of severe adverse effects was also higher with minocycline than with doxycycline
- Life-threatening hypersensitivity reactions and autoimmune adverse effects were more frequent with minocycline than with doxycycline
- In practice, minocycline has a less favorable risk-benefit balance than doxycycline, particularly in the treatment of acne.
Europe says no. America says yes. It can only mean greed.
Here are the drugs that commonly induce DRESS.
Phenobarbital, Carbamazepine, Phenytoin, Lamotrigine, Minocycline, Sulfonamides, Allopurinol, Modafinil and Dapsone.
Please pause before automatically taking prescription medication. The sky isn’t falling, but we are big consumers. Acne medications in the US alone treat 50 million people. With the current wrath of unwarranted, serious adverse events being reported, including death, I had to share.
Thank you for taking this in, Hannah Was Here
Nancy Szakacsy M.S. LMFT
Author of Hannah Was Here: D.R.E.S.S. an alarm that must be heard.