Bactrim - Septrin - Septra - Sulfatrim: readers'letters on side-effects risks

From: A P Langham, Harlow, Essex

July 12 1995

Dear Sirs,

I read with interest your article on Septrin in your magazine.

My son Shane died in Great Ormond Street Hospital after spending many years in and out of hospitals after taking the drug Septrin.

He was given Septrin at a very early age, 5 years old. He began to get very bad blistering to his face, lips, ears and eyes. We sent him to St John's Hospital and were told his condition was due to exposure to daylight. For the next three years of his life he was unable to go out and not able to attend school, or live a normal life. His condition got worse - he was still being given Septrin by our GP. He lost weight and did not grow. After I informed Dr Hawk and Dr Atherton that I was concerned about his general health he was sent to Great Ormond Street Hospital for many years. He was in and out of Great Ormond Street. He had numerous tests, operations, biopsies, but his condition got worse. He began to blister so much internally that we would pass a tube through his nose into his stomach to have a liquid feed.

His immune system broke down and healing after an operation was non-existent. He had a circumcision which did not heal even after a year. His lungs became affected and he was sent to Brompton lung hospital for more tests. This was when he was sixteen years old. About 2 months after those tests his lung collapsed and he was back in Great Ormond Street Hospital. He died in hospital just before his 17th birthday.

Shane's life was taken from him and I ask this question. Who was responsible for his tragic death?

1. Those who produced and marketed the product?

2. The GP who in good faith prescribed it?

3. My wife and I for giving it to our son?

4. Great Ormond Street for not linking it to Septrin for over ten years in their care?

My wife and I have to live with this nightmare. So do his brothers and sisters. If this letter helps in any way Kate Reid with her quest, then Shane's death can and should help others who may be thinking of giving Septrin to think again.

One death is one too many.

From: David Gedala, Coulsdon, Surrey

March 1 1994

Dear Mr Deer,

Re: Septrin - Your front page article (Sunday Times 27.2.94)

I have recently been helping and supporting family friends to get over a near fatal incident, arising out of taking Septrin. As I was reading your article this morning I felt I have to write and inform you about a serious incident relating to the intake of Septrin.

The following is an accurate account of what took place:

1) Family background. Joe Madalura is married with three children aged 5, 12 and 17 years. His wife is a psychiatric nurse. Joe until the near fatal dose of Septrin never suffered from any serious illness or received any major treatment. He was fit and active, he has worked hard as a mini-cab driver for more than 15 years.

2) On December 8th 1993, he went to see his family GP because of an earache problem and was prescribed Septrin.

3) Emergency GP services were called out to his home following severe breathlessness, skin condition and weakness. The GP diagnosed his illness as measles and flu. As the situation worsened Joe could not breathe, pass urine and was bed-bound.

4) In obvious panic Joe's wife took him to Mayday University Hospital and he was admitted on January 4th 1994.

5) There the battle to save his life started, after intervention from Croydon Community Health Council. A consultant took over the case and performed major treatment on Joe's kidneys, liver and other organs, to reactivate all the major body functions, which had ceased.

6) Joe was in hospital in intensive care and relatives and parents flew from Canada to see him as his condition was critical and no one was confident about Joe pulling through. Thanks to the consultant and his staff Joe did pull through.

7) Currently Joe has lost weight and can just about walk a few yards, cannot drive and once a very sharp brain is now struggling with intermittent memory loss episodes.

8) With help of Croydon Community Health Council, a complaint was lodged against the GPs through the local FHSA committee. The complaint about the GPs is being investigated by a neighbouring authority, Kingston FHSA, as the GP is a member of the local FHSA committee.

9) The attached copy of the discharge report indicates the cause of Joe's near fatal illness and the consequent pain, depression and disruption to his family, and the possibility of not being the bread winner for a long time.

10) There is a sad twist to this: the consultant having found out that a complaint has been lodged, has approached Joe to ask if he could change the words on the discharge report, from Septrin induced reaction to some other cause. Rightly Joe and his wife refused to return his discharge report.

Joe and his wife are originally from the Philippines and came to the UK 20 years ago. Their three children were all born here. They have no financial, legal or other resources to fight for a full and fair investigation. Joe is suffering with long term, possibly permanent damage to his lifestyle.

I am writing this letter to you with Joe and his wife's permission. They feel very vulnerable and helpless and are not confident about the outcome of the FHSA investigations.

If you wish to discuss this further please do not hesitate to contact me. I am a senior manager with social services with a London local authority. I am taking this up on behalf of Joe and his family, as they are not very articulate and feel very unsure and nervous about complaining.

From: Mrs Carole Heath, Bournemouth, Dorset

Undated

Dear Mr Neil,

Re your article "The Pill That Killed" by Brian Deer.

My name is Carole Heath and I, amongst a great many fellow sufferers, have been victim of the drug "Septrin".

My history started in April 1976 at the age of a fit and healthy 25 year old. I was at the time in Aberdeen where I contracted a urine infection for which the local GP gave me Septrin. The condition worsened, so he doubled the dose of Septrin and he went away for the weekend. By the time he arrived back, I was so ill I was admitted to Aberdeen Royal Infirmary where I had many tests and finally blacked out having had diarrhoea twenty-three times out of twenty-four hours. The diarrhoea was very serious as it had blood in it.

I was rushed to Aberdeen Teaching Hospital where I was told if I didn't have an immediate operation my bowel would burst. The operation was called an ileostomy and I would have to wear a bag for the rest of my life.

I had the op, but luckily for me the registrar had seen another case like mine before which was an allergy to Septrin, so I would only have to wear a bag for six weeks and then be reconnected after a course of steroids to rid the infection and rest my bowel.

While still in hospital recovering I started haemorrhaging and an ulcer was diagnosed. The ulcer was being fed by the aorta and it grew so much it burst and I have a massive haemorrhage, blacking out and haemorrhaging from every opening possible.

I had an emergency partial gastrectomy. I finally left hospital looking like a skeleton and losing my hair which eventually all fell out and I lost two stones in weight, which I have never recovered.

I wore a bag (ileostomy) for six weeks and was reconnected.

After learning I had what the doctors call very severe dumping syndrome - which causes diarrhoea, vomiting, sweating and bloating of the stomach after every meal. So in 1978 at a London hospital I had a reverse loop put in (a section of bowel was removed and turned around) to stop the food going through too quickly.

Every year I have been in various hospitals for operations to remove stitches, adhesions and haemorrhoids, sometimes two or three times a year.

In 1984 I had a disc go in my neck for which I had another major operation, taking bone from my hip to replace the disc. Unfortunately this was unsuccessful and I still have trouble now.

My son (Stephen) who is now twelve years old has never known me well. All he remembers is visits to the hospitals to see me.

In 1986 at Hammersmith Hospital, London, where I had spent 2 years in an out with various tests and investigations as to why I couldn't even keep down water let alone food.

I had yet another major operation to remove part of the reverse-loop-bowel which was blocking, but this was only partially successful, so after most meals I am very sick.

I was treated at Oxford hospital for sickness where I was given different drugs. The same at Hammersmith which didn't help the symptoms and only made me feel like a zombie.

My marriage went from bad to worse and in 1991 unable to cope my husband left me and divorced me in 1992 and married a fit and healthy woman.

So not only was I very ill losing my youth, I lost my marriage as well and I developed another ulcer and now have pernicious anaemia.

What life I have in store for me I don't know as I battle on.

I read the article by Brian Deer and was heartened to hear I wasn't alone with my reaction to Septrin but now feel abandoned as there has been no follow-up article or further action.

Thank you for your kind attention.

From: Margery Russell, Chester

May 4 1994

Dear Brian Deer,

Thank you for your letter of the 7th April with enclosures and for all the trouble you have taken researching Septrin. Your articles have helped me enormously as my reactions to Septrin were considered by the medical profession as coincidental with my taking the drug and now it is on the computer as something I must not have. My husband who has had a very tiring time coping with my long illness now knows that it was caused by the drug. Previously he said over and over again "it is only what you say".

From: Zofia Mescall, High Wycombe, Bucks

May 3 1994

Dear Sir,

I was prescribed Septrin Forte in September 1978 for a sore throat. My health at that time was perfect in every other way and I was enjoying a full and happy life with my husband and two young sons.

Within forty eight hours I suffered a very serious collapse which was closely followed by rash, purpura under the skin, blistering in my mouth and throat, swelling, breathlessness, oedema, nausea, pains, intestinal symptoms, dizziness, weakness. Blistering of my eyes followed together with profuse bleeding, collapse and near death.

My health has never returned. The past sixteen years have been a limbo. I am, and have been since taking Septrin, disabled. I feel maimed and am dependent on others. I have suffered the indignities of invasive investigations, surgery, loss of earning potential. My sons have been deprived of a healthy mother, from the age of four and eight, and I of their childhood. Doctors refused to listen and admit their blunder until I met one who had suffered a reaction herself.

The brilliant articles in the Sunday Times raised hopes for victims like myself. Why have you allowed a scandal to be revealed then taken it no further? How can all of us who are already weakened because of injury take on Wellcome? The exposure in the Sunday Times united many sufferers. My voice has not been heard in sixteen years. I know your job is to publish news but I envy you the privilege of your position which empowers you to act and stop this chemical poison from damaging more people and ruining lives of affected families. You have resources to deal with this, we do not.

I recently leant of a little five year old girl Fiona, who lives close by. At four years old she suffered the same syndrome - I was deprived of enjoying motherhood, she, sixteen years later her early childhood. What quality of life has she to look forward to? Her mother is filled with grief and guilt for "feeding this poison" to her child. Would you take Septrin or administer it to one you loved?

From: John Foss, Bristol

July 9 1995

Dear Brian Deer,

Ref: Septrin

As one who suffered the Stevens-Johnson syndrome, and was seriously ill for a week, in June 1981, after being prescribed the drug by a doctor at Stockwood Health Centre (Bristol) for a sore throat, I would like to be put in touch with Kate Reid. Could you very kindly pass my enclosed letter on to her?

I am sure hundreds will be writing to you, but if you are keeping a score, I was warned by the lady doctor who attended me at Hayle, Cornwall, where we took a holiday, that I must never take it again because another course of Septrin could kill me.

Eight days after being prescribed the drug (on the Saturday night of our arrival at Hayle for a holiday) I went to bed with an unpleasantly itchy left hand, its centre marked by a small red spot. I awakened in the morning with large, ballooning clusters of red blisters from my knees, up over my genital area, covering the whole of my front to my shoulders, and all down my arms and my back. Only my lower legs, neck and face escaped.

I spent four days of excruciating pain, treated by Piriton and cold baths day and night. After only some 10 minutes of relief from the excessive heat I was creating, the water heated up enough to wash-up in! It was a dreadful and frightening time.

On the Wednesday night, I collapsed unconscious, and curiously, it marked the turning point and start of recovery.

By the Saturday I was able to make a shaky drive home, but it was eight weeks before I was able to work. My doctor at Stockwood dismissed it as a "one-in-a-million" bit of bad luck. And that was that.