This page is material from a 1990s investigation and campaign in The Sunday Times of London over the risks of an antibiotic with many names, such as Bactrim, Septra, Septrin, Sulfatrim, and co-trimoxazole

Bactrim Co-trimoxazole Septra TMP/SMZ side effects

Page 23 of mail to investigative reporter Brian Deer recounting sometimes serious side effects of the antibiotic often known as Bactrim DS, Septra or co-trimoxazole

SEPTRA: 28 May

Brian,

I recently found your website and wanted to share my own awful experience with the drug, Septra. A few days ago I was prescribed the drug for a UTI. I have had a history of UTI’s for years, but this was the first time a doctor recommended this particular drug for it. (I also should mention the doctor I saw was not my regular doctor).

Several hours after my first dose, I felt anxious for no reason. But since I already have anxiety, I didn’t think much of it. So later I took my second dose that evening. I could feel my anxiety increasing, and had no idea what could have triggered it at the time. There was nothing around to upset me, and I rarely got anxious for no reason.

Then that night, the anxiety grew to an unbearable peak. I kept getting strange urges and visuals, like cutting my tattoo off my leg with a knife, ripping out my naval piercing, crushing my dog’s ribcage by accident. I would NEVER attempt or even want to imagine such horrid images! I would get panic attacks where my heart would race and the room would feel like it was spinning. I developed other new symptoms too. The room felt like it was tilting and I could barely keep my balance. I felt extremely nauseous. My skin felt burning hot, like someone had poured hot lava through my veins.

I think that night I only got about 2 hours of sleep, and the remainder of the night I just wanted to die. I refused to take any more doses the next day and called my doctor’s office, demanding to be put on a different prescription. They switched me to the same prescription I took last time I had a UTI. I was still shaky and not quite feeling myself the day after, but gradually I began to feel much better.

I have never experienced such a horrible experience from any drug until now. Even though it has passed, I will never forget how it made me feel. I hope that others can be warned about this drug.

Rachel


SEPTRA: 29 May

Brian,

I am a 39 year old Pediatric Nurse. I started taking Septra on Friday (today is Monday) and I took my last dose of Septra ever on Sun morning!!! Within 3 hrs of taking this med I started having severe muscle pain in my buttocks and the back of my legs. Aleve and Tylenol helped but the pain never went away completely. Later that night I had a headache, my eyes were bloodshot & tender and I also developed a fever. I could not get myself off the couch nor out of bed all day Saturday. I couldn’t believe how terrible I felt! I was also very “grumpy”, faint and felt as if I was in a “fog”. On Sunday my hands and calves hurt and my face was a little swollen. Today is Monday and I noticed last night and this morning that my belly looks rather swollen. My elbows hurt & I almost look pregnant!!! My stool is also a very dark green. I have never had a reaction to any drug and I cant believe that I was so clueless about Septra! After all, our Drs prescribe this medication to children everyday!!! I thought there was something else wrong with me that maybe I didn’t just have a UTI. I took it without even thinking twice about it! But after the way I felt this weekend I started to research the drug and found this site. I cant believe how many emails there are on this site and so many suffered many of the same symptoms I did. We need to report all these side affects to our Drs and make them report them to the drug companies that produce them and the FDA!!! It is the only way people are going to see how dangerous this drug really is… I am guessing from many of your emails that these reactions go unreported because the Drs are not making the connections. How can we change this? How can we all report this to the FDA? Other websites I looked at reported all the same info. I think are there many more people who have suffered these side affects and many more people are going to suffer more if we don’t do something about this drug.

I hope I haven’t suffered any long term damage from this! All over one simple UTI!!! I will never take Septra again and I will warn everyone I know to opt for another form of treatment. I say its time that we all get together and go after these people? Aren’t there any lawyers out there who want to take on a “Class-Action Lawsuit”? This is usually the only way to stop these companies… Or what about just contacting 20/20 or Fox News??? They are always looking for new stories.

Really, something must be done. This drug is a lot more dangerous then people think… I truley was scared to go to sleep in fear that I might not wake up the next morning – I felt that bad… It was aweful.

Also, I would LOVE to hear from people who had my symptoms and how they feel now & what, if any, long term damage they suffered???

Thanks,

Nurse Mar


BACTRIM: 31 May

I was admitted with severe pneumonia two weeks ago and hospitalized. It was determined that I was suffering from a PCP infection in my lungs, one lung had to be drained. I’ve been on Bactrim now going on my third week and I’ve noticed no side-effects whatsoever. Having read all the horror stories, I was scared to take it, but I’m more scared of not breathing with PCP. I haven’t experienced one unpleasant symptom I can attribute to Bactrim other than very hard and solid bowel movements which I assume are caused by die-off of beneficial bacteria in my lower intestines. On the other hand, my gums are bright pink and my skin has gotten oily, when it normally is very dry, which I don’t mind either. Maybe I’m just a lucky one in my experience thus far.


BACTRIM: 1 June

I had just happened to be surfing the web and came upon your website. I am a nurse and am very knowledgeable with medications. I believe that all of you have had very bad experiences, from what I read, with bactrim and I’m very sorry for that. But your physician should have told you the risks of bactrim and what to look for in an allergic reaction. Most people who are truly allergic to bactrim are allergic to sulfur which is a component in bactrim. If you are allergic you will experience facial swelling, difficulty breathing and other life threatening symptoms. I am currently talking Bactrim for acne and I have taken several medications to try and get rid of acne. Bactrim, so far, has been the easiest to take. All the other antibiotics have caused GI distress and not really helped my problem. So although I believe most of you have general concerns about this medication it is up to you to be an active participant in your healthcare. Research all medications before you start to take them. And trust me, ever single medication out there can cause these symptoms not just Bactrim.

David C


SEPTRA DS: 2 June

Hey Brian. I am a teenager that came across your site as a result of having weird side effects from the antibiotic Septra DS. My dermatologist perscribed it to me a couple weeks ago. The third or fourth night I started taking it, I started getting this weird tingling feeling in my body. I went to bed thinking it was nothing. However, it only got worse. I kept waking up from horrible nightmares and feeling worse, but instantly falling back to sleep. This went on the whole night until I finally woke up and couldn’t move or speak, but the worst part was that I didn’t know where I was for a couple minutes. It was like I was paralyzed and I was very confused and frightened. My body felt like it was numb all over and I was unusually hot. Somehow I finally got out of bed and was shaking, but once I started walking around I felt a little better, although I had a headache afterwards. When I tried to do my homework instead of going back to sleep, I couldn’t hold my pencil. I’ve been taking this antibiotic in smaller quantities for a couple weeks now, and the only side effect I’ve had since then is the tingly feeling in my body. Do you think I should keep taking it? I have an appointment soon with my dermatologist, but after reading all the emails on your site that you got I’m not so sure about this medicine. Thanks for your time.

JT


BACTRIM: 8 June

Hi Brian,

I found your articles most interesting since I spend the past few weeks thinking I was going crazy. I live in Michigan, USA and began a Urinary Tract Infection around ten days ago. My doctor prescribed SMZ/TMP for three days. I began my first dose on Thursday evening. On Saturday morning, I woke to pain in my middle finger of my left hand, just in the knuckle….then it moved, during the day, into the center of my hand…only the middle finger to the center of the hand. On Sunday morning, I awoke to the same pain only on this particular morning, it had also affected my left middle finger and also moved down into my center of my hand. I also had noticed tiny water blisters on my left fingers and thumb, not a lot of them but enough to bother me with persistant itching. By Sunday night, my feet, both of them were so swollen I thought they were going to burst. Being very much afraid, as I am a heart patient, I laid off the water and had no salt for two days…thinking that the salt was making me retain water??

As the days went by, all symptoms left me…..I had finished my SMZ/TMP and things were looking better until four days ago. I had reoccuring UTI symptoms, spasms whenever I urinated so I again called my doctor. She had me come in to her office where they tested my urine. It came out clean with no blood or anything and she thought it odd but suggested that perhaps a tiny, tiny bit of bacteria was still inside my urinary tract. So…she again prescribed another three day regimen of SMZ/TMP. I again took the first dose that evening. The next morning, I didn’t notice anything too particular and then took the next dose. By evening, the pain had returned first to my middle fingers again and traveled into the center of my hands again. By the time I went to bed, I had a low grade fever, the most horrible thing being that I looked in the mirror as I washed my face to prepare for bed and what I saw of my eyes absolutely terrified me. My eyes were blood-red….veins…..I could not believe what I was seeing. The next morning after a very uneasy sleep, I woke to feel a bit better, no more chills but decided to stop the meds as it was sinking in that I was having a drug reaction.

Today I called the pharmacy to speak with the pharmacist and told him of my problems and he said that he had never heard of that sort of a reaction. Hmm….very, very mysterious….

I read some of your letter posts and didn’t see any symptoms like mine….it’s odd, isn’t it? That this happened then and when I realized that it was happening again, it was like a light coming on. Voila! It’s the medication!!! Tonight, my veins in my eyes have calmed down somewhat and tomorrow I am calling my doctor to tell her exactly what had happened. I wished I had realized that it was from the drug the first time!!!

Thanks for reading this…and for your informative site…

Char M, Michigan, USA



SEPTRA DS: 19 June

dear brian,

i was doing some research on this medication and stumbled onto your site with all the posts/comments…….while i have absolutely no experience with this medication, i would like to share some other info that might help some folks on this sight that sound desperate for alternatives to prevent/tx urinary tract infections. i have a long hx of UTIs and a five year old daughter who began suffering chronic UTIs@ only 21 months of age, two years ago she had to have kidney ultrasound to check for kidney reflux which can both cause UTIs or be caused by chronic UTIs and is Very Serious, she also had to be sedated, cathed, and had a “voiding urethra cysto gram” sp? all a very unpleasant process especially for a child that by that point was terrified of DRs and freaking out, by age four the UTIs had become so chronic, they were occuring every 8-10 weeks and she was going to have to have all this testing repeated if she got one more UTI………..my mom found and we started her on a product by Melaleuca called “CranBarrier” it’s basically a concentrated chewable, there are other similar products, but we’ve found this to be the most effective, after starting it she was able to fend off a beginning UTI for the first time, and she has now been UTI free for about 14 months!!!!!!! it’s been amazing for us, she takes one a day (half the serving size listed) for preventative measures and if she begins to have any symtoms i.e. urinary frequency, “accidents” or “leaks” or pain with urination we up her to two to three tabs a day! for a child who was suffering from these awful infections every few months this has been huge, as well as decreasing unpleasant dr visits and the risk of antibiotic resistance from frequent doses and from one dr recommending prophylactic(sp?) use of antibiotics (taking them every day to prevent UTIs……not a good idea in my opinion) anyhow i’ll wrap this up by saying i hope this info can be shared with and possibly help someone out there….plz feel free to email me with any questions, just make sure you’re subject line refers to this so i’ll open the email from an address i likely won’t recognize :O)

Denise


BACTRIM: 21 June

I started taking Bactrim ( smp/tmp combo) 400 mg. 2x per day for acne. I have been on it one year. My dermatologist did blood work after 6 months to test my liver function and it was fine. 6 months later, my AST and ALT enzymes were elevated slightly. The AST was 40 and the ALT was 59. The bloodwork was repeated 3 weeks later ( still taking the meds) and the levels were now 94 and 145. I was told to stop the bactrim immediately. I have called my general doctor for mor bloodwork. They now have me scared I have

hep!!! I am fearful this bactrim, taken for so long ( no idea it was harmful!!)…has damaged my liver!!!! Just wanted to let you know what happened to ME… hopefully, being off the bactrim will restore my liver

Function.

Judy J


CO-TRIMOXAZOLE: 21 June

Dear Brian

I was diagnosed with Active TB in Feburary this year. Due to the fact that I was already HIV positive with a low CD4 count my doctor recommended that I start taking Co-Trimoxazole to prevent PCP from occuring.

I took the drug for around 14 with no side effects when I suddenly began to feel extremly unwell. My temperature soared overnight and I felt desperately unwell. I would describe the illness as several times worse than Flu. It left me with severe headaches that would stay with me 24 hours a day and severe nausea along with severe depression to the point that I was going downhill fast. I suddenly did not want to eat and could not even summon the energy to get up off the floor on most days. I used to crawl to the toilet because all of ym strength was taken. It was a true knightmare.

My HIV specialist and TB specialist seemed to be convinced that my illness was TB related but I was always sure it was the Co-Trimoxazole to blame. They switched me onto Dapsone and I also reacted badly to this drug but nothing in the same league as Septrin. I becamse slightly nauseous and developed a rash over my chest and back. I was only on Dapsone for 6 days and my doctor took me off of that.

At this stage my CD4 had dropped to 32 and my doctor was desperate to get me protected from PCP. He wanted to put me on Atovaquone but it reacted with my TB drugs. My doctors decided that my experience of Septrin could not be blamed completely on my ill-health when TB also gave many of the same side effects. I was of a different opinion but was re-assured by my doctors that I didnt have many options left to try and that it should be OK to try Co-Trimoxazole againa and mointor it closely.

I took the drug again at 6pm in the evening and by 9pm I was admitted to casualty. In the 1st hour alone I had developed a rash and severe high temperature. I was shaking and my head felt like it was about to explode. I couldn’t believe how quickly I was reacting to the drug.

My doctor still does not seem entirely convinced that the Co-Trimoxazole was to blame but I am in no doubt. It was the single most harrowing experience of my life. At it’s worst point my symptoms made me want to die, I was in so much pain.

I only took 1 tablets of Co-Trimoxazole but it took nealry 10 days for it to clear my system and for me to begin to return to normal. Even after 3 months I still don’t feel the same person that I was before.

I only help that my story can help others in making an informed decision before they choose this medication.

Graham, Manchester, UK


SEPTRA: 26 June

In Dec. 2005, I starting taking Septra for a kidney infection, about 5 days later, my body started tinggling & hurting really bad, went to the hospital,I had told them i was taking the septra, they said No it would not cause this, they said you are not getting enough blood to your fingertips, Go home and take some asprin. so i did, that did not help, 2:00 in the morning i went to another hospital 40 miles away. they would not fixture it out. they thought i had been poision, they also said NO not the septra. gave me pain meds., sent me home. 2 days later, back to the hospital, getting worse. Once again, gave me pain meds, and sent me home, Oh the last two trips to the hospital, they said i needed to go to see an neurology. at this time i was really bad, I coudlnt sleep ot eat for 7 days, Was off work for 3 weeks. Finally got in to the neurology, After lots of test he said i have neuropathy. will propably have it the rest of my life. All the doctors & Pharmacys told me NO WAY Septra would not do this to you. Now in June 06. I have a sinsus infection. the doctor gave me septra. i took 1 dose, an hour later, i started getting all the tinggling and really feeling uncomfortable

so i went to the pharmacy, he said no way would septra do this to you, go get some benadrill, so i did, but forgot to ask him how long it would take to get that 1 pill out of my system. so i went back to him, and he said he was just looking on the pharmacys website at septra and side effects and found that one of the side effects was Neuritis he was very shock. But none of the doctors or pharmays knew anything about this side effect. It is only listed on the pharmacys website. Now because of this, I have to live with Neuropathy the rest of my life, very uncomforable & painfull. No cure. Maybe if the hospitals had known about this side effect at the begining they may have been able to help me.

Jean


BACTRIM: 28 June

Hi Brian,

I am writing to give a follow up and WARNING to those who have suffered PREVIOUS severe reactions to Bactrim.

I first wrote you on April 6, 2006 about my extreme reaction to taking 1-Bactrim Tablet. Within an hour of taking it I had severe hives (feeling of knives coming out of my skin), fever of 103, beet red eyes that pulsed and felt like they would pop-out, extreme pain in my muscles, (like I had been beaten all over), extreme weakness (needing help to walk to the bathroom), loss of feeling in my fingers, pain in my wrist, and later partial loss of vision in both eyes.

Now several months later I found that the WORST was yet to come. At the time, an ER Doctor warned me that for me, the next “Severe Reaction” to sulpha could be Fatal.

I am now finding that if I eat, drink or wear anything that has sulpha in it that I have reactions from mild to moderate. This includes cream in my coffee, pastries, frozen dinners, Chinese foods, eggs, soda, some body lotions…you name it. Unless I stick to a diet of WHOLE/NATURAL Foods I will very often have a reaction. After eating or drinking I know within 15 minutes if I will have a reaction. My face, ears, eye lids and around my lips immediately break out in bumps and are itchy. My fingers, particularly on my right hand become very sore and if I am having a moderate reaction I lose feeling in my fingers and in my cheeks.

I have also found that most reactions are small, but if I drink coffee w/cream with a donut that the reaction is much worse. So, while there are maybe small amounts of sulpha in these items together they can be very Dangerous.

I very nearly had to return to the ER after eating Chinese Food with a soda for lunch. But, within 15 minutes I knew I needed bendryl and LOTS of WATER.

So, even after healing from the immediate effects of Bactrim, I don’t think we get to go back to living the way we did before and have to be constantly on guard for what we eat, drink, and forever VIGILANT about what medications our doctors prescribe.

(Now the for comic relief….after my severe Bactrim reaction…my doctors (nurse practitioner) needed to change my prescription, for another health issue, and I carefully read the Walgreens warnings on the new prescription and guess what it said…DO NOT TAKE THIS DRUG IF YOU HAVE HAD A SEVERE REACTION TO BACTRIM… Fortunately, I did not take the drug BEFORE reading the label. Can you believe it!

Brenda R


BACTRIM: 28 June

I was prescribed bactrim for a urinary infection. Within a few hours I had violent reactions including uncontrollable shaking, itching and swelling of my hands and feet, sores in my mouth, nausea, and back and neck aches. In addition, the next day and for several days afterwards, I had severe pains in my legs which prevented me from standing or walking. I live in New York, and did not know this was caused by the bactrim until my husband discovered your website, and gave me some of the letters from your readers. I want to thank you, and your reader Tammy B, who had almost identical symptoms to mine, for saving my sanity by explaining these effects were from the medicine.

Joan S



BACTRIM: 6 July

Brian,

I came across your name researching the side effects of Bactrim. I have suffered all my life from nodular or cystic acne. I went on my 1rst treatment of Accutane in 1999 and went on my 2nd treatment of Accutane in 2002. Over the last year or so I started having outbreaks of nodular acne again.

About a month ago I developed 1-large nodular acne on my left neck about an inch or two below my left lymp node. My dermatologist drained the boil and prescibed me Bactrim 800 tablets. She advised me to take this pill twice a day. I developed many symptoms very similar to the ones I read on the testimonials that I found on the internet. I never had a rash but I experienced fatique, muscle and joint aches, and I even had a fever (with hot/cold chills) one night. It is also hard to explain but I also felt mentally “out of it” while I was on Bactrim as well. I just didn’t like how it made my body feel.

But the most disturbing thing that has happened over the last 2-weeks has been my left lymph node. My left lymph node has become extremely enlarged and tender to the touch. I asked my dermatologist if the swollen lymph node was caused by the Bactrim and she said no.

I have had many nodular acne boils on my face and neck over the years and I have never experienced a swollen lymph node because of them. And then all of a sudden after taking the Bactrim for the first time and experiencing all of those symptoms, my left lymph node swells to an extremely large size.

Sincerely,

Eban B, Tampa, FL


BACTRIM: 8 July

Dear Brian,

My son, age 4 1/2 , was treated with bactrim last week for an infection he had in his chin. I informed the physician of my allergy to sulfa. I had only a mild rash in the past after taking Septra.. So we knew to stop the medication if I saw a rash on my son. So on the 6th day of taking the medication my son had a mild rash. I held the evening dose. In the morning he had a fever of 103 degrees and a rash on every part of his body including blood shot eyes. His ears and lips appeared swollen as well. The doctor knew right away it was erythma multiforme and he was prescribed prednisone for 5 days. The rash was painful & itchy for several days and he is now at day 4 and the rash has improved but persists. I found out a friend of mine was hospitalized for 2 weeks after taking the same drug, bactrim, when she was 4 years old. She had severe blisters and Stevens-Johnson syndrome. She had been given the full 10 days prescribed and almost died. Her scars are there to remind her of the blisters. I shudder to think what would have happened to my son after 10 days as was prescribed.

Shara L


BACTRIM: 9 July

I took Bactrim several years ago for a UTI. I took the first pill and within 15 minutes had this prickly

feeling all over my body. Within a half hour I had broke out, not in hives, but a red rash all over my

body, even in the whites of my eyes, that looked like I had a severe sunburn. I began to vomit severely and

my joints ached terribly. My face swelled up almost unrecognizably. A few hours went by I called my doctor and told him that I thought my kidneys were shutting down or something. They had me come immediately to the office. He was shocked at what he saw. He totally believed that it was a reaction to the Bactrim. He said if I would not have come in and would have taken the 2nd pill I would have died! I told him the only reason I didn’t take the second pill was because I was vomiting so bad I couldn’t stand the thought of taking anything orally, including water to take that pill. He has since marked it in my file as extremely allergic to Bactrim and I will never take it again. He gave me shots of Cortisone to take down the swelling and counteract the reaction. I to this day still have joints that ache terribly at times and bouts of such extreme fatique that it is very hard for me to get to work and function. I am now 53, can’t quite remember what year I took the Bactrim, but I think it was like 9-10 years ago.


BACTRIM: 9 July

Dear Brian,

I didn’t realize there were so many others that had reactions from this drug (Bactrim)

I was prescribed the drug Bactrim from my family Doctor for an infection I had caused by an abscess tooth, 800 mg twice a day since I am sensitive to drugs this was my Doctor’s drug of choice to combat my infection. The side effects started the second day with light headedness, dizzy, aches, loss of appetite by the forth day I woke up with a temperature over 103.6 welts and hives from top to bottom of my body even the palm of my hands and the bottom of my feet were hurting swollen and bright red, My mouth and gums and throat were full of blisters I couldn’t even brush my teeth.

I called my Doctor that morning went into her office she took one look at me and knew it was a drug reaction, She sent me to the Emergency Room at the Hospital, they took me in right away put an IV started treatment I was in emergency 5 hours I’m still under Doctors care, This drug should not be in the market.

I wanted to share my story

Brenda G, CA


SULFATRIM: 12 July

Dear Brian, My best friend’s Granddaughter just died this 4th of July due to taking “SULFATRIM” she broke out in a rash a short time after taking it…She brought the little girl back to the doctor’s to let him know she got a rash from it .He then gave her some Zithromax to take and was pronounced dead that afternoon. He told her the week he gave her the sulfatrim that she had a urinary tract infection. when the rash broke out they said she had the flu and would just take time to take it’s course. I cannot make any sense of this and feel for this family ,as I too am a Grandmother also…What do these parents do?? Are they going to take this deadly medicine off the market? This is my first day looking this up. They said she passed from a viral Mycarditis?.. Please respond to me at your own Convience ,as I know you must be a VERY busy Man.. I just can’t make any sense out of this ..she was a healthy little girl.. Regards

Marie D, N.H

RELATED:

Bactrim-Septra: a secret epidemic

Chronology of a newspaper campaign

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