Black out
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.
Wrong!
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.
Who knew?
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.
Dear Nancy,
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.
Leonie says
Words fail me Nancy. Thinking of you and Hannah today. Hugs from Ireland x
Nancy Szakacsy says
Thank u so very much.
Pam Chapman says
Nancy,
I am so sorry to hear about your daughter. My daughter was prescribed minocycline also, and had a sever reaction and was placed in Children’s Hospital in PA. They had no idea what was wrong with her and like your daughter, had every test known to man, even a bone biopsy, because they thought she had Leukemia because her White cell count was so high and her liver enzymes were out of the moon. Finally after 2 weeks of being in the hospital they found out what it was and gave her predisone. She did get better, but it affected her thyroid and she now has to take medicine the rest of her life for it. She still has some health issues. If she gets run down, she gets colds easier now and it is an ongoing battle and she hates it. I kick myself because she wanted her acne to go away and as a mom you try to help your children. Her new doctor does not think she had dress syndrome, but i know she did and no one will ever tell me any different. More people need to be aware of the medicine they put into their bodies and i regret i did not do more to learn about it, but i trusted a doctor who was supposed to know. I am so sorry again about your daughter, but thank you for sharing your story to help other parents recognize the signs and symptoms. Thank you.
Tiffany Kotulka says
Pam,
I am sorry to learn about your daughter; I understand your pain. This is so ironic, my 15 yr old daughter was admitted at CHOP in September of 2018 for DRESS.
I just discovered this article and your comments as I continue to research side effects and possible solutions. My daughter is still on Prednisone, uses topical steroids for dryness and itchiness, histamines and a host of other things.
I’m curious how your daughter is doing and what relief measures you used.
Thanks so much Pam,
Tiffany Kotulka
Kimberly says
My heart goes out to you for all you’ve endured.
XOXOXO
Hugs to you from Canada
Nancy Szakacsy says
Further information and people currently suffering D.R.E.S.S. at https://www.facebook.com/pages/DRESS-Syndrome/674483749282438
jay says
Is D.R.E.S.S. akin to Stevens Johnson Syndrome??? I Mean in The same Family so to speak. I know That Lamictal and Tegretol are big culprits of SJS. What exactly happens in These 2 Syndromes??? I’ve Heard a Simple Explanation as To The Fact That The Medication or It’s Metabolites Reprogram the Immune System Resulting In Burning From The Inside Out. SJS.
How Do Blisters and Burns Develop With out Being Burned??? Is TENS in The Same family as DRESS?? I Know It’s similar to SJS but More severe. When I took Provigil I Had Blisters form On My Arms But Particularly on My Penis and around that Area. Thank God It Healed OK and still Functions as good as New. These blisters freaked me Out. I knew it was an Allergic reaction to Provigil and I Knew About SJS. The Dr. at The ER Examined My Blisters on my arms. Heasked, “Are There Blisters any where else???” I said No because I Don’t want strangers along with Nurses looking At Me. I Was Given A load Of Percocet and an Antibiotic and sent On my Way. The Dr. Never explained To Me what I Had. I knew and I was lucky to be Walking out of the Hospital. Never took Modafinil Again. I Noticed also that when I took Butalbital and Acetominophen for bad head aches I Came Down With An Aggravating Red, Hot Rash On My Forearm Only. I Did some research and found I Had a Barbiturate Rash. They Are Common I Read. I’ve Seen People With SJS in text books. It’s awful and looks Very painful. Many Dr.s Don’t Recognize it as SJS. It’s Chicken pox Or Just a simple Rash, perhaps from poison Ivy. I also Do Not Feel It is As rare as It Is said to be. That poor girl went through hell because her Dr. Didn’t know how to recognize it. As A Dermatologist He Should Be an Expert on The syndrome. If Any one perhaps Dr. Healy Can explain the workings Of SJS, TENS and DRESS. Thanks.
Elyse says
I am so sorry, this is such a heartbreaking story. I am currently dealing with DRESS Syndrome as a result of carbamazepine. I was extremely lucky that I got a fairly early diagnosis (I was sick for a week before I ended up getting admitted to the hospital, on my 5th day in the hospital I got the rash and the doctors realized what was wrong and started steroid treatment). More awareness needs to be done, even though it’s rare. My doctor in the hospital has been a doctor for 15 years and has 10 years of medical training, and had never seen a case of it (I think I really lucked out that she remembered it from medical training :S).
Nancy Szakacsy says
http://dresssyndrome.org/wp-content/uploads/2014/09/Resources.pdf
roberta says
Deeply moved by this.
Thank you for sharing so succinctly.
Hannah was here and I heard.
Blessings.
Rory says
Damn. in tears. How can this continue to happen?
Nancy Szakacsy says
Thank u Rory, it’s a scandalous scene, Big Pharma. I spent decades treating clients who struggled with addiction, getting them off bi polar meds when they weren’t bi polar etc… I had no idea the level of corruption I would later discover, hidden information that cost Hannah and thousands of others, their lives. I cry for all of us now, doing what I can. You heart is
so appreciated.
Rory says
Nancy,
scandalous indeed. Human nature at it’s worst. Thank you for your efforts to help, educate and save others from this obscene behavior. I know some of it is committed out of ignorance, maybe much of it. But the source of thr problem is greed on the part of drug companies. I have decided to do what i can to spread the word and possibly help someone out of this trap. I can now see that my dad was a victim of psychiatric malpractice. Psychiatry took a man who was struggling under the strain of physical injury and pain and destroyed his life with “treatments” that were nothing less than torture . He never escaped the trap, it eventually killed him. The worst part was the 3 decades of torture that he and his family had to endure, not understanding what was really going on.
D. Bresler says
I am physically ill from reading the account of Hannah’s tortuous experience. My heart goes out to her family. My late husband suffered from Stevens-Johnson and was on a burn unit for over a month, unconscious, on a respirator from taking Lamictal. When is our government going to support better research, better reporting to the FDA (Reporting of adverse events is VOLUNTARY!!)
and restrain the greed of Big Pharma?
Nancy Szakacsy says
D. There is no question you understand, sending so much love for your loss as well. I have 9 reported D.R.E.S.S. cases from Lamictal on my https://www.facebook.com/DRESS-Syndrome-674483749282438/notifications/. My book, Hannah Was Here: D.R.E.S.S. an alarm that must be heard, covers the journey in its entirety, how easy this happened to a girl who didn’t even ask for meds, and certainly didn’t need them nor did we have any clue that D.R.E.S.S. existed. Now, if we can at least know that doctors are aware of this and have a helpful protocol to treat it, I can rest. Ignorance not bliss with D.R.E.S.S. Thank you so very much.
Yara says
Hi Nancy,
I’m so sorry to hear about your loss 🙁
I have had 2 major DRESS syndrome reactions. My reactions didn’t appear after 3 weeks. They somehow appear within a week sometimes days. After my first reaction my body became hyper sensitive to all pharmaceutical drugs. I really don’t know how the solution to all of this is. I think more and more people are becoming more sensitive to all types of drugs. My first reaction was in 2007 and then my immunologist at the time didn’t know of any cases personally. A year or so down the line he had a few patients on his books experiencing the same. Anyway, I don’t even know why I’m writing this. I just thought I would let you know about my case and know that dress is a very strange thing as when I read about Hannah’s story I couldn’t relate with some of it. So indeed much more research is needed to understand hypersensitivity, as it seems to present itself very differently to each individual 🙁
Veronika says
Hi, I am still crying. I will never forget your daughter.
I am a pharmacist. I was trained in Hungary, and now I work in New Zealand. The difference in approach to medicines are fascinating. I find, that in New Zealand many strong, temporary, high risk medicines, like steroids, antidepressants and yes, oral anti-acne treatments (isotretinoin as well as tetracyclines) are prescribed without much concern. I could tell you many examples of my practice where I believed they were prescribed unnecessarily. The most painful part of my job is when these srugs are prescribed to babies, kids and young people, who haven’T got enough experience to make a decision.
I had not one discussion with young girls about acne being a natural expression of necessary hormones and seeing acne as a part of our lives – I felt confident talking about it, having Darier’s disease which involves severe acne. However, one of my employers told me off for “chatting too much to patients and spending not enough time in the dispensary” meaning that I should just go on selling whatever is asked for. One customer even placed a complaint when I offered her an alternative but effective solution to her rash instead of steroids.
My heart is with you. My message as a pharmacist is that medicines don’t treat. They just exchange one problem to an other one. Medicines are convenient to give, because the prescriber can feel that they have done what’s possible, and the new problem can be put down as a side effect, not as an illness, therefore requiring little attention, and no responsibility. But for the patient, pharmaceuticals are often only a ticket to be neglected with less recognisable and barely treatable problems. The road can take a few steps (“safe” NSAID-s for pain, “safe” PPI-s for stomach discomfort, but then untreatable and often undetected magnesium deficiency and cardiovascular symptoms with unlooked for reasons), but eventually it leads to shrugging doctors.
If you feel there is anything you want to ask, talk about or just let me know, please feel free to email me Nancy.
Nancy Szakacsy says
I can barely express my gratitude to you and the others for really taking this in. Truly to experience it, unimaginable. The 40 families now in our D.R.E.S.S. community, at https://www.facebook.com/pages/DRESS-Syndrome/674483749282438 battle this everyday and would love to have you share anything on the support page. I will reach out too. Thank you.
Kem Minnick says
Very sorry, Nancy. Was Hannah a vegetarian or have an undiagnosed eating disorder? Yoga teaches vegetarianism, which could have been responsible for both her acne and her heart failure. Any type of food elimination such as gluten, dairy or meat can quickly cause an eating disorder, especially in teenagers. Drugs are not the solution and most certainly do cause problems but so do vegetarian diets required as a component of a “Spiritual” practice such as yoga. Wishing you well and much sympathy for your loss.
Nancy Szakacsy says
Hannah was not a vegetarian, just a healthy 16 year old girl looking forward to college. D.R.E.S.S. is absent from common knowledge, our public resources on the whole are little, we were watching and still couldn’t have known, even with D.R.E.S.S. on the label, no one knows what it really is, and/or how scared they should be. Not a spiritual thing, very human thing GREED thing.
RC in NY says
My heart goes out to you. As a parent, I can only imagine the deep loss. Doctors are so eager to just write a RX for everything, whether or not it is necessary and as patients we put our trust in them. Health care is becoming more about making money for pharmaceutical companies and not about helping people get well. It makes me angry that we put our precious babies in their hands and their motives are not always for what’s in the child’s best interest. Thank you for sharing Hannah’s story, raising awareness and hopefully preventing this tragedy from reoccurring.
Nancy Szakacsy says
Thank u RC,
Often the doctors aren’t even told, drug companies don’t have to report to doctors, docs don’t see label changes, and warning label changes. Even when ordered by FDA, changes are not always made in a timely fashion, assuming post marketing reporting actually occurs and by whom. Hannah rarely went to a doctor, she did not overuse antibiotics nor did she ask for anything other than a facial from him. In her case the doctor was not told about D.R.E.S.S, until after she died. This is part of a bigger picture calling all parents and loved ones to ignore wisely. It is worse than you think in Pharm. land.
Tonya says
I am so sorry for your loss. Thank you for sharing your story. I am teaching my first lecture in immunotoxicology and during my research found your site. I will be sure to teach my students about D.R.E.S.S. May God bless you and yours.
Nancy Szakacsy says
Tonya, this brings me so much gratitude and joy. This is it, you have made this mission true. Blessing to you and yours always.
Lynette says
I am so sorry for the loss of your daughter. I can not thank you enough for sharing your story. I just went through this with my own daughter, but her reaction was severe and quicker. I had taken her to the doctors for a UTI on 12/21 he gave her a prescription for amoxicillin, but asked her to hold off taking it until the culture came back with the strain of bacteria. It came back E. coli and he called her in Bactrim on 12/24 the day she began taking them. She began to get sicker. First cold like symptoms, headache, sore throat, extremely tired. Then her glands began to swell, first in her neck, then behind her ear. I brought her back to the doctors on 12/28 he said she had Mono & ordered labs. Labs were run 12/29, that night she was running a temp & wanted to take a bath when she got undressed she was covered head to toe with a rash that looked like someone took a red sharpie marker and put tiny dots all over her body; it was everywhere. I took her back to the doctors on 12/30 her temp was up to 104 he sent her to the hospital to be admitted. They admitted her through the ER and put her on the Peds floor and ran labs, we sat there for hours. Next thing we knew they were rushing her to the PICU telling me she was going to go into shock any minute and the had to put her on a respirator, insert a main line, artery line, and catheter. They were telling me they thought she had toxic shock syndrome since she had her period. They ran every test, culture that they could possibly run. By the next morning her liver enzymes were over 6000 and she was in liver failure, her kidneys were shutting down and her heart was enlarged. They had to fly us to Children’s Hospital in Philadelphia on 12/31 for a possible liver transplant. I was never more scared in my life. When we arrived I met with her new team and went through everything again. She was hooked up to so many IV lines, pumps, they were all piggy backed, that I lost count at 25. At 4am on 1/1 the dermatology team finally arrived and told me they think she had something called DRESS Syndrome, which basically was an allergic reaction to the Bactrim she was taking. They started her on steroids. By midday her numbers started to come down. On 1/2 they removed the respirator and all of her lines except a regular IV line and moved her to a regular floor. She had tested positive for Coronavirus so she was confined to her room and everyone had to gown up. She developed pancreatitis and those numbers began to climb. The steroids saved her life. If the dermatologists did not come in and catch that everyone would have still been on a wild goose chase, with my daughter’s life hanging on a thread. She stayed in the hospital for a total of 12 days. They decided since she was symptom free from the pancreatitis and her liver enzymes were continuing to move in the right direction, that she could finish her Prednisone taper at home. Her labs are run every 2 weeks and she sees the Gastro and DERM doctors at the same intervals. As of today she has only been home for two weeks and although she is extremely tired, I could not thank God enough that I was able to bring her home.
Doctors need to be informed about this. When they hear the list of medications a patient is taking and they have certain symptoms, they should look to DRESS first. I guess what’s hard in some cases is the fact that the symptoms are slow to present themselves. I still believe that doctors should not be prescribing medicine that they do not know all the possible risks and side effects involved. Hannah was here, and I heard.
Nancy Szakacsy says
Lynette, please stay close and visit us at https://www.facebook.com/DRESS-Syndrome-674483749282438/notifications/ Thank you for sharing this and filling my heart.
Lynette Monchinski says
I will stay close Nancy. I was unable to access that Facebook page, it said I could not enter.
Dr. David Healy says
Quick note to report I’ve survived DRESS syndrome. Diagnosed by an Immunologist after leaving hospital. 1 month out and still on steroids and several antihistamines. I was taking Biaxin, Tinidazole, and Ibuprofen, 14 days for Lyme Disease when I noticed a rash on my stomach. I immediately stopped ALL meds. One week later I was admitted to hospital for IV steroids and antihistamines for 12 hrs after my throat was closing and the rash was unbearable. I used an emergency epi pen and drove myself to ER. Covered in severe Uticaria, low fever and high liver eosinophiles. Was suggested from a Blog I read, “Hannah Was Here”, that I report my diagnosis here. Thank you and have great day,
A
karol g says
hello , my name is karol i am 25 years old and i was taking modafinil to improve my concentration , it felt incredible i was able to concentrate and stay awake up all night studding for my tests. it went super for about 6 weeks . one day i woke up feeling dizzy and my skin was red and itchy , i went to my local hospital( i live in central america ) and they prescribe me with amoxicillin and Loratadine , i trusted the doctor and started my treatment for 5 days , at the time i was working as accounts payable rep and studding . life was looking great . after those 5 days i returned to my normal life . i was still feeling a little bit dizzy but i was feeling better . all of a sudden 1 week after i returned to work i woke up covered in blisters and a full body rash , it felt like i was burning on the inside , all my body joints hurt and i could even walked. my mother rushed me to a hospital and they diagnosed me with chikungunya virus i received high doses of Nimesulide and Acetaminophen, after a few days my health was even worst , i didn’t only had the rash increased and the joint pain i also got my face , hands and feet swollen . I looked like a balloon . the hospital staff dint find what was The reason but send me to allergist , My parents called the allergist but he was not able to make an appointment that same day , they looked on the internet and we went to the first allergist that pop out in google maps . I can tell you for sure it was GOD plan to have the other doctor so busy , as soon as i arrived he looked at me and told me : you have DRESS . My reaction was doubt . I was so tired of hearing the other doctors , he prescribed me 3 types of steroids plus a cream. i went home and follow his instructions , he order me a full exam for our next appointment in 7 days . after 3 days on steroids i was not swollen any more , the rash was almost gone and i was feeling better. after my exams results came in he was surprised and right . I had Dress my eosinophils count was at 17 000 when normal rates between 400-500 i been battling this disease that had really impact my life , i cant eat what i like anymore , I have to be extremely careful with sunlight , steroids have change my mood so much , i was mad all the time and i develop chronic insomnia so my doctor suggestion was to visit a Psychiatrist she prescribed clonazepan 2mg before bed . I was able to sleep again but i start feeling sad and start crying for no reason so the prescribed pristiq , winch is not metabolized by my liver so thatch why i can take it with out getting sick . some how my days have improved but DRESS has changed me forever and the ones that i love too. as i read your case and it brought me to tears, your daughter is a warrior . I send hugs and prayers.
kind regards ,
karol
Linda F says
My daughter was just on CARBAMAZEPINE for her Trigeminal Neuralgia and she also developed DRESS syndrome …. This IS DANGEROUS stuff! She was diagnosed in a timely manner at Dartmouth in NH, and is on prednisone for the next 56 days among other meds … PLEASE PLEASE ask questions or RESEARCH your self! Google is AWESOME for researching ! I am SO glad I got her the help she needed ASAP !! Fingers crossed she continues to get better..!
big says
I’m on DRESS right now due to cefazolin or vancomycin or both just throwing it out here if anyone else is prescribing antibiotics
Glenna Fagan says
I have developed DRESS syndrome. I was given a high dose of Amoxicillin in all about 15 days. Mine isn’t as severe as Hannah’s but I have been to 3 emergency room visits admitted once (which was an awful experience). I was treated like a pain medication seeker and I never even ask for any pain meds. Numerous doctor appointments, and thousands of dollars in medications, ointments, creams, lotions, steroids. On 60mg prednisone for 10 days with a 17 day taper twice, not counting the shots and medrol dose packs. It has been going on over 14 weeks now, my hands are still splitting (bleeding)and peeling. My finger nails are coming off. I can’t even make fists because all the splitting, pain and swelling. My feet are still peeling and I have one place under my right arm that still breaks out in a burning rash, but at least the rest of my body just peels like a sunburn but the pain is better. I have no choice but to work but some days I just don’t know if I am going to make it. I had a liver biopsy that showed very early signs of hepatitis. I just don’t understand. I sure hope we all recover soon.
Linda Keesee says
I too had DRESS Syndrome Feb 2019 caused by Sulfasalazine. I was on it for a month when suddenly I became weak,feverish, diarrhea and slight rash. Admitted to the hospital. Stayed 10 days. In a days time I had a full body rash.. After much testing they came up with the DRESS diagnosis and started the heavy dose of prednisone. I am still having problems from my journey with this disease. I had trauma to my kidneys and liver and skin now at March 2020. I am so sorry about Hannah. And yes I heard. God bless you. And PS The doctors at Baptist Hospital in Winston Salem, NC saved my life but I have since seen several other doctors who know nothing about this and are still prescribing these drugs without a thought. One HANNAH is too many. God bless you always
Nancy Szakacsy says
Such invaluable information and immeasurable love. Thank you, Nancy The doctors at Baptist Hospital in Winston Salem, NC saved my life but I have since seen several other doctors who know nothing about this and are still prescribing these drugs without a thought.