DRESS Syndrome: No Way to Treat a Lady

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June 15, 2015 | 29 Comments

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  1. 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.

    • 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).

    • 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.

      • 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.

  2. 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?

    • 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.

      • 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 🙁

  3. 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.

  4. 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.

    • 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.

  5. 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.

    • 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.

  6. 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.

  7. 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.

  8. 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

  9. 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

  10. 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..!

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