hmschoolmom22 Posted March 20, 2009 Share Posted March 20, 2009 long story short....I suffered with a cold for far too long - turned in to a sinus infection of course - went to the Dr. was a given a sulfa antibiotic---are you allergic to sulfa the Dr. asked me, well, I don't think so - fast forward 5 days later - I come down with horrible muscle aches, body aches and a fever of 102 - go to the Dr. Monday(dh didn't go to work I was sooo sick, he took me to the Dr.)get to Urgent Care and I start throwing up - fever now 102.7! they give me a flu test - negative...send my home with phenegren(sp)for the nausea and diagnose me with Stomach flu/virus, get plenty of rest, lots of liquids, tylenol for the fever. Wake up the next morning with a pretty mild case of hives, fever again and my heart is beating out of my chest and I'm having a hard time breathing...go back to Urgent Care - hmmmm...what is this rash? another flu test...negative....maybe your body is just having a large reaction to the sinus infection and how long it went untreated...oh, and I also have a huge swollen lymph node on my neck(right side)....here's an antihistamine for the hives, continue tylenol for the fever and I don't think you ever had the stomach flu, I think you were vomitting from the extreme body aches and fever. Went home, hives worsened during the day, called the Dr., he called in Prednisone - took that, went to bed - woke up the next morning looking like this it is like the worst sunburn of your life but it itches more intensely than you can imagine!!! here's a shot of my chest we are in the Urgent Care when it opens - my heart rate is 140, I have a fever of 102 and the hives are out of control! the Dr. is stunned - gives me shot of antihistamine in my hip - and assures me that everything is going to be okay and that I should probably stop taking the antibiotics because they "may" be causing this---I go home and drug myself up, take a cold shower, have a good cry and try to sleep. Thursday rolls around and now my back and chest are just red with purple bruising and welps but now my arms and legs are on fire and burning up! my lips are burnt too - my next door neighbor is an emergency room nurse and has been for over 30 years, I ask her to come over and examine me - within the moment of my taking off my shirt she said "Stevens Johnson Syndrome! are you taking sulfa meds for something?" I of course say yes and tell her the whole story. Needless to say, I had friends and family calling during this time telling my about SJS and it was so scary to think about that I brushed in under the rug and the images that I had seen on the internet about it looked much more horrible than me - lots of mouth sores, eye sores, etc...and I had none of that. But...yes, I have SJS! it has been a living nightmare and I'm finally on the better side of this! I took 6 to 7 days of sulfa meds and I'm paying a high price for it! my skin today is crazy looking - it is red, inflamed, purple, it has bruises and sore, I am itchy, I am hot and then I'm freezing. My fever is gone though and I can now sleep during the night. My reason for telling you this - well to share my pain, lol! BUT, more importantly, if you are not sure if you or your children are allergic to sulfa medications...PLEASE DO NOT TAKE THEM! Quote Link to comment Share on other sites More sharing options...
Rhonda in TX Posted March 20, 2009 Share Posted March 20, 2009 I don't know if I'm allergic to sulfa meds, but I definitely won't take them now. Wow! Quote Link to comment Share on other sites More sharing options...
MeanestMomInMidwest Posted March 20, 2009 Share Posted March 20, 2009 I have never seen this outside the ICU. It can be dangerous. Has your skin started sloughing off yet? Please be sure to stay hydrated - drink lots of fluids - and if you experience vision disturbance, decreased urine output, uncontrollable pain, or see signs of an infection on your skin or elsewhere, please go back to the ER. SJS is now part of your health history that should be relayed to all healthcare providers. You may consider getting a bracelet and have it inscribed to indicate your history of SJS and what caused it (because several things can cause SJS in different people, it is not always caused by sulfa drugs). Of course you know that sulfa drugs are taboo for you now. Good luck, and keep us posted of your recovery. It may take a long time. Don't overdo it, okay? Quote Link to comment Share on other sites More sharing options...
Catwoman Posted March 20, 2009 Share Posted March 20, 2009 Lisa, I'm so sorry you're going through this! :grouphug: I hope you feel better soon -- and thank you for the warning about the sulfa drugs! Cat Quote Link to comment Share on other sites More sharing options...
Annie Laurie Posted March 20, 2009 Share Posted March 20, 2009 Wow, I am so sorry for what you're going through. Thanks for passing this on. :grouphug: Quote Link to comment Share on other sites More sharing options...
mcconnellboys Posted March 20, 2009 Share Posted March 20, 2009 Thank goodness it didn't develop into open wounds for you. I have a friend who had to be treated on a burn ward for an even more severe reaction. Antibiotics can cause nasty reactions. There's a new round of them out that can cause various neurological problems as well as the nasty little side effect of causing all types of blood cell production in the body to shut down. I know this because I researched it after such a drug was given to my 100 year old grandmother last spring and it nearly killed her (she's immortal, though, LOL and is still kickin'). Glad you survived your ordeal and hope you're all better soon. I'm movin' more toward homeopathic meds, myself, and away from the nasty side-effects all too many antibiotics cause..... Quote Link to comment Share on other sites More sharing options...
katemary63 Posted March 20, 2009 Share Posted March 20, 2009 Oh my...so sorry. Get better fast! Quote Link to comment Share on other sites More sharing options...
hmschoolmom22 Posted March 20, 2009 Author Share Posted March 20, 2009 thanks for all the well wishes and words of advice too!!! yes, we are watching my skin very carefully, so far - no sloughing or open wounds of any kind. I was told to get a med alert bracelet to show that I am highly allergic to sulfa and that I have suffered through SJS. I am drinking tons and finally able to nap as of today(which feels so good)! thanks again everyone and I hope my story can help someone!:grouphug: Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted March 20, 2009 Share Posted March 20, 2009 Thank you for posting--I now have a name for an experience I had with sulpha many years ago. I am soooo sorry for your misery!!!:grouphug: I took sulpha drugs for an infection in my early twenties. The drugs made me sick as a dog, but I thought that was just because it was such a powerful drug. I do tend to react to strong medicines, and take child-sized doses of most things. However, when my arms broke out in a rash similar to yours (though not nearly as bad) I called the dr. He just told me to stop taking the meds and that was that. My case was not nearly as severe as yours, and I have always listed sulpha as an allergen in my medical records since then. Hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 21, 2009 Share Posted March 21, 2009 SJS---YES< I have heard of it but thankfully we have not had it here. My girls are both on Lamictal and it has a risk of SJS so we had to go up very slowly and monitor them closely for any signs of illness, etc. Hope you get better and stay away from Sulfa. Quote Link to comment Share on other sites More sharing options...
elise1mds Posted March 21, 2009 Share Posted March 21, 2009 Oi vey! I sincerely hope you're doing better now - that just looks frightening! I have a sulfa allergy myself, so my pediatrician has always been uber-careful with doling out any sulfa meds to my children. Now I know why. Thank heaven for your ER nurse neighbor! Quote Link to comment Share on other sites More sharing options...
Bess Posted March 21, 2009 Share Posted March 21, 2009 My son is allergic to sulfa. What I'm curious about is why the doctors were not able to diagnose you and you had to call a neighbor??!! That is alarming. Quote Link to comment Share on other sites More sharing options...
Tree House Academy Posted March 21, 2009 Share Posted March 21, 2009 (edited) Yes, and you are VERY lucky to have survived it. There are cases of Stevens-Johnsons where the skin literally dies on your body. I knew a child who died from this at the age of 8 after taking motrin. Feel fortunate, please, that yours was no worse than it is. (and it looks just terrible)! Prayers for a quick recovery! P.S. I am allergic to sulfa too. One dose when I was 3 and I had a rash from head to toe in about 10 minutes. The pediatrician will not give sulfa to my kids because I would have to handle the pills with gloves. :( Edited March 21, 2009 by Tree House Academy Quote Link to comment Share on other sites More sharing options...
klmama Posted March 21, 2009 Share Posted March 21, 2009 Wow! That brings back memories! I'm allergic to sulfa, too. I had that same red rash all over my body for about a week until the sulfa got out of my system. (It took 5 or 6 days for the rash to appear, and about as long after stopping for it to go completely away.) The only thing that helped me feel a little better was oatmeal baths, but even that didn't help much. The prednisone fnally did something, I think, but it wasn't a quick fix. :grouphug: Virtual hugs are the only ones you want right now, I imagine. I hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
Paz Posted March 21, 2009 Share Posted March 21, 2009 I hope you are feeling better soon and so glad you discovered what this was. I took sulfa drugs once and got a severe sore throat and sores in my mouth after 2 doses. Quote Link to comment Share on other sites More sharing options...
joannqn Posted March 21, 2009 Share Posted March 21, 2009 Oh, that's is so horrible! I have never had sulfa drugs and now I'm pretty sure I don't ever want to have them. I'm allergic to both cephalosporins and penicillins. I'm so allergic to the former that any nursing children I have cannot have it either as it causes me to break out in full body hives if they nurse with residue in their mouth. I found out when I broke out 2 hours after my youngest was given it as a newborn. It took me 3 days, several nurses, and three doctors to finally convince them that I was reacting to my son's medicine. My youngest is also allergic to cephalosporins. Our ped. avoids penicillins with him as well...just in case. I hope you get better soon and have no lasting effects from it. Quote Link to comment Share on other sites More sharing options...
Tracy in Ky Posted March 21, 2009 Share Posted March 21, 2009 Oh--I am so sorry. That sounds just horrible. Quote Link to comment Share on other sites More sharing options...
Stacey in MA Posted March 21, 2009 Share Posted March 21, 2009 And YES, I can't understand why they didn't figure this out sooner! All the while, you were taking the drug and making the problem worse! URGH! Doctors....can't live with 'em, can't, well you know.... ;-p My DS10 has a sulpha allergy too. (I found out later that my Dad is also allergic). DS's reaction was to the first dose, and pretty much right away. I would say with an hour or two, he was complaining and I noticed it on his tummy - red rash and hives. Dr. said the reaction will typically present on your body first in the location where it touches - so b/c DS took it orally and it ended in his stomach first, the rash began around his stomach area, then spread up and downward. I've since been told that sulpha allergies are pretty common. Maybe one of the reasons they don't use it all the time? OK, gotta run - busy hollering at my kids! Ahhhh!!! Feel better soon.....glad you found out what it was finally. No more sulpha for you! - Stacey in MA Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted March 21, 2009 Share Posted March 21, 2009 SJS---YES< I have heard of it but thankfully we have not had it here. My girls are both on Lamictal and it has a risk of SJS so we had to go up very slowly and monitor them closely for any signs of illness, etc. Hope you get better and stay away from Sulfa. Yes, I was going to mention that Lamictal is one of the drugs that causes SJS. At least I know exactly what I am looking for now. :001_huh: Quote Link to comment Share on other sites More sharing options...
Shelly in IL Posted March 21, 2009 Share Posted March 21, 2009 to see if that is indeed what you had? My nephew (26) had something very similar to this a few weeks ago and it lasted for about 3 weeks. Any ideas? Quote Link to comment Share on other sites More sharing options...
Suzanne in ABQ Posted March 21, 2009 Share Posted March 21, 2009 I have had a similar reaction to sulfa drugs, but I didn't know there was a name for it. My case wasn't as bad as yours. They knew immediately what it was, and told me to stop taking the meds. It went away in a day. I hope you're feeling better. Quote Link to comment Share on other sites More sharing options...
Frontier Mom Posted March 21, 2009 Share Posted March 21, 2009 Yep, my oldest son who has never had a drug allergy had this earlier in the year. It was sulpha drug allergic reaction but they didn't give me a name. I about freaked out when I saw his back for the first time with this. However, I immediately took him off the antibiotic which helped keep it to a minimum. Still, it was scary. Now I know what it's called. Thanks and sorry you had to go through this as well. My doctor gave him an immediate shot which worked withing just a couple of hours. The practitioner was going to give him an oral dosage which would have taken days. Nope, I said give him the shot!! Quote Link to comment Share on other sites More sharing options...
Highereducation Posted March 21, 2009 Share Posted March 21, 2009 Wow! That rash looks painful. I've been on both sides of sulfa drugs - I spent my childhood suffering from what seemed like a perpetual UTI and kidney infections, so Bactrim was my go-to medication for many years! In fact, at one point I was on it daily for a period of about 2 years. I'd heard about the side effects (including a blood disorder that one of my friends suffered from after taking Septra), but thank the good Lord I didn't have any reactions. Fast forward many years, to this past fall. My dad wasn't feeling well, found a bottle of Bactrim that had been prescribed for my mom earlier in the year that she hadn't needed and decided to self-treat (uh-oh!). He had a horrible, horrible reaction and ended up with a rash just like the OP's and a fever of 103. He was given a shot in the ER and recovered after a few weeks (only to end up back in the hospital with blood clots unrelated to the reaction), but it was pretty rough going. Very frightening. To the OP - I hope you make a quick and painless recovery. Also, I don't know if the drs. mentioned this to you, but stay out of the sun until you're feeling better! Sulfa can make you very photosensitive. Quote Link to comment Share on other sites More sharing options...
sarahli Posted March 21, 2009 Share Posted March 21, 2009 Other meds may trigger a reaction too- be careful! I had an allergic reaction to sulfa, but I stopped the med as soon as the dots started popping up, which was 24 hours. Since then, I've been prescribed once or twice meds that say on the leaflet- "do not take if you're allergic to sulfa- risk of SJS". I'm a nurse, so I always read the little leaflets that come with meds. The new class of NSAIDS (Bextra was what I was given) are under this category. Always double check when you get a new med! Quote Link to comment Share on other sites More sharing options...
Wendi Posted March 21, 2009 Share Posted March 21, 2009 I'm so sorry you're going through this. I had never heard of it before. I'm allergic to Sulfa, too. (After taking it for a day or so, I felt weak, sicker, feverish. I thought it was just my UTI. Then I felt weird and tingly all day, and like my legs were restless. Then I saw the hives start. I had a shot of Benadryl, and took Benadryl for a couple of days. It took several days for the hives to disappear completely.) I hope you feel better soon, with no complications! Wendi Quote Link to comment Share on other sites More sharing options...
runamuk Posted March 21, 2009 Share Posted March 21, 2009 How awful! I had an allergic reaction to sulfa 9 years ago. It took the doctors a week to figure out what it was (one doctor kept insisting it was an allergic reaction to water chestnuts :confused:). Once they got me off the sulfa, I started feeling better but it took 3 weeks of steroids to clear the hives. I hope you're feeling better soon and have a quick and easy recovery! Quote Link to comment Share on other sites More sharing options...
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