My Experience with Stevens-Johnson Syndrome

Have you ever heard of Stevens-Johnson Syndrome? If not, that puts you in the position I was in a few weeks ago. I hadn't heard of this condition caused by an allergic reaction, usually to a drug, until I was diagnosed with it. I've lived a long time and had a lot of painful and often unusual maladies, but this has to rate at the top of the list of miserable conditions I have experienced.

But I was fortunate, because mine was said to be a "rather light case" of it. That was hard for me to believe till I heard of the little girl from our area who has a bad case of it. Then I could count my blessings.

The little six-year-old girl has been in a burn center for quite some time, and is fed through a stomach tube because her mouth and throat are so covered with sores that she can take in no nourishment at all. Her skin is sliding off in huge patches. Stevens-Johnson syndrome is said to burn the skin from the inside out. Infection in such cases is a grave possibility, and often causes the death of the patients.

Again, I was fortunate. My skin only broke out in welts--granted, from the top of my head to the soles of my feet--and the itching was constant, maddening, and unrelenting. But at least my skin stayed on.

I'm sharing this not to whine about my misfortune, but in hopes it might help a reader who is going through something like it or knows someone who is, and might not be properly diagnosed yet. Early diagnosis is vital to faster recovery, and even so, it might take weeks or months to fully recover.

Here is what led up to my experience with Stevens-Johnson Syndrome. A couple of months ago my husband and I started a rather extensive repair job on our house. The house is now 12 years old and was beginning to show signs of wear. We have 10-foot ceilings in the living/dining/kitchen area, which I loved till it became necessary to work on them. There were some nail heads coming through the sheetrock and some places where the tape was beginning to show. These needed to be fixed before we could repaint.

While it sounds unwise--maybe downright insane, for people our age to be trying to do such a job in the first place, we feel we really have no choice in the matter. In our area it is almost impossible to find anyone to hire to do such work at any price. Our children don't live in the area and they have more on their plates to deal with than they can get done anyway. So we would never ask them to leave their responsibilities and come to help with such jobs. So we just moved the furniture out to the garage and into other rooms and got to work.

I've always enjoyed working on the house, while it's among my husband's least favorite pursuits. So I was spending hours at a time on an 8-foot ladder. I used various products to re-tape and patch cracks in the walls, one in the floor, and mortar and grout to replace some loose ceramic floor tiles. As a result, I had my hands in a lot of different chemicals.

Meanwhile, a UTI had been bothering me for months, and unfortunately I took this time to try to get it treated. I always put off such things as long as possible because antibiotics and I just aren't compatible.

So I called to try to make an appointment with the only doctor in our small town. As usual, there were no openings. Our doctor is a friend and a good man as well as a very competent physician. His receptionist offered to have him call in a prescription for me without seeing me. I suppose they thought I had had enough UTI's at this point that I would know if I had one.

They called in a prescription for Cipro. I had reservations about it, remembering back in the '90's when I had been given a rather large round of it by another doctor when I was going through another kind of problem. I recalled that I had not had a good experience with it, but hadn't exactly suffered an allergic reaction to it. I hated to call back to the clinic and ask for something different, since I wasn't paying for an office call and didn't want to sound ungrateful. So I started the 10-day course of Cipro.

Within a few days I found it hard to climb the ladder at all and my legs, hips, and back started to hurt so badly I couldn't sleep. My husband banned me from the ladder and finished the high work himself. I did what I could from the floor, but the pain continued till the Cipro was gone. I felt really bad in general through the whole course of the drug and afterwards. But knowing it is unwise to fail to complete a round of antibiotics, I was determined to stick it out.

A week after finishing the drug, my muscle and joint pain had subsided to a more bearable level and continued to improve.

In the past, I have had a number of incidents where my lips would swell and I would break out in small patches of hives. These incidents were always, to my knowledge, stress related, and usually lasted only a few hours.

One night a week after finishing the Cipro, I was out on the deck talking on the phone when a spot just behind my armpit started to itch. I came in and told my husband I thought I had a mosquito bite. He looked and said, "I think that's the worst mosquito bite I've ever seen."

A few minutes later, my lips started to swell. I recognized it without checking in the mirror, since it has happened before. Ten minutes later, my throat became very sore and it felt like I had a huge pill stuck in my throat. A generalized itching started spreading over my body and when I went to a mirror, I saw that a large area on my back was covered with red welts. Considering the pain and itching, we were afraid I had shingles.

By the time I was getting showered to go to bed, my eyes were swollen almost shut and my lips were so swollen I couldn't completely shut my mouth. The lump in my throat felt so large I could barely sip a little water. By bedtime, the welts had pretty well covered my entire body and the itching became more and more intense.

My husband wanted to take me to the emergency room, but since that would have been a fifty-mile drive, after dark, I turned him down on his offer. By morning I was regretting that decision. I spent a lot of the night sitting in a tub of cold water and rubbing on any cream or lotion I could get my hands on. I also took Benadryl all night.

The next morning I couldn't get in to see my doctor, so we drove fifty miles to a walk-in clinic in the next state. The doctor there said I was having an allergic reaction to something. He said it might be the Cipro, but it might also be something in the paints and other products I had been into. Or, it might have been to some food I had never had problems with before, or something that had been added to a laundry detergent, or anything else in the universe. In short, he didn't know. And he said I would probably never know. But, he added, never, ever, take Cipro again. I'm sure he thought, as I'm now convinced of, that it was the Cipro.

He gave me a two-in-one steroid shot. One was for immediate relief, the other for extended relief. I went home and started taking all the Benadryl allowed. And scratching. The itching was so intense that I would scratch a place till it was ready to bleed and pour on straight Listerene or rub in Ben-Gay to try to get it to burn instead of itch. Even that didn't help.

My husband drove to Wal-Mart in the next town and brought home bottles and tubes of various anti-itch ointments, gels, and creams. On the next trip up he found a big box of medicated powder that he thought might help and brought it home. It helped me get through one night later on. He was in this with me, and suffered along with me. It was a helpless feeling for him to want so much to help and be unable to.

The shot seemed to help a little the first night, which was Friday. But by Sunday the itching had intensified to the point that I just couldn't stand it. The swelling in my face had gone down some, but was now replaced by huge red hives on my face.

We made the long trip back to the walk-in clinic, which was the only place other than an emergency room to get treatment on a Sunday. The doctor said the shots given two days earlier should have done the job. But they hadn't. He prescribed a round of oral steroids and gave me a prescription for an antihistamine. We were able to get them filled at a Wal-Mart in that area.

By Wednesday, I was no better and to the point where I would have welcomed a coma. I can deal with pain, but itching can literally drive one mad. I was sleeping a total of maybe two hours out of 24, and that only a few minutes at a time. I called my doctor's office again, and was told he was completely booked. I asked them to call if they got a cancellation. That afternoon, they called and said they had a cancellation and would take me if I could come immediately, which of course I could.

When I saw my doctor, I filled him in on the past week and said I wondered if perhaps I had been mis-diagnosed and it wasn't an allergic reaction at all. He looked at my swollen, blotchy face and the welts on any exposed part and said, "It certainly looks like an allergic reaction to me."

He asked if the other doctor had drawn blood for a test, and said he thought I might have Stevens-Johnson Syndrome, which is an allergic reaction that goes well beyond a normal allergic reaction. He drew blood and I tested positive for Stevens-Johnson Syndrome. I'm not sure what the test shows, but he came back in and said, "I know I'm going to have a hard time convincing you you have a light case of anything, but I think you have a lighter version of Stevens-Johnson Syndrome. The reason I say it's light is because if it were a really bad case, you'd have so many sores in your mouth and throat that you couldn't get anything at all down."

I told him that I thought the antihistamine the other doctor had prescribed might be hurting my stomach, because the stomach pain was also keeping me awake. He said the steroid might be hurting my stomach, but the reason my stomach hurt was probably that the lining of my stomach was in the same shape as my skin. That might also account for the horrible taste in my mouth. So he gave me samples of a medicine that did help the stomach pain.

He said Benadryl would probably be better than the prescription antihistamine, so it would be okay to just take Benadryl in place of it. Over the course of the next week, I was taking Benadryl every four hours around the clock. It did bad things to me, but was helping keep the itching down enough so I could just bear it. One night I was just dozing off when my fist shot out in a classic fighter's punch. I was thankful my husband's face was out of range. After that happened another time or two, I moved to another bed. My poor husband had enough problems without having to go out the next day with a black eye.

One strange effect of the Stevens-Johnson Syndrome is that I was bruised over most of my body as the hives went away. I thought it was caused by the hard scratching I had done, but was told that hives will leave bruises.

I have six days of steroids left to take. My itching is almost gone and my skin looks remarkably well for what I've been through. The steroids are not something I would want to take any longer than necessary, as I know the side effects they have on a person. For me, the worst thing is hunger. An hour after I eat, I'm so famished again that I could tear off my own arm and eat it raw. I've never been much of a meat eater, but I've turned into a real carnivore. But I'll eat anything I can get my hands on. If I try to eat in moderation, I get so weak and shaky I can't stand up.

In addition, I find I can't stand to be in the sun and can take very little heat or humidity. I'm very nervous and can't sit still or quit talking. Whether that is a side effect of the steroids or the illness, I can't say. But it is a small price to pay for relief from that horrific itching. For now, I'm mostly just staying home and away from people so I don't talk them to death. I encourage my husband to get away as much as possible, for his own good! Hopefully, this, too, will soon pass.

My main reason for writing this article is to encourage anyone who is experiencing an allergic reaction to anything, and especially a drug, to seek medical help as soon as possible. If a doctor tells you you're having an allergic reaction, ask if it might be Stevens-Johnson Syndrome. Again, the sooner it is diagnosed, the better the chance of recovery.

Some of the signs and symptoms of Stevens-Johnson Syndrome are:

Facial swelling

Tongue swelling

Hives

Skin pain and itching

A red or purple rash that spreads over the body. My doctor said this rash (in my case it was all welts) tends to move around. One day the welts on my legs would be better but my back would be worse, or my back would be better and my arms would be worse.

Another symptom is shedding or sloughing of the skin. I didn't have that-only severe itching on and around the raised, angry red welts. The welts would run together into patches the size of the palm of my hand.

Several days before the rash shows up, you might experience burning eyes, sore throat, fever, and cough. I can remember the burning eyes, but thought it was just seasonal allergies.

In really serious cases such as the little girl in our area has, Stevens-Johnson Syndrome can be deadly. It's still uncertain if she will live. Her reaction was attributed to an antibiotic she was taking for a staph infection.

I have no doubt that in my case, Stevens-Johnson Syndrome was caused by the Cipro. I knew I was allergic to penicillin and sulfa, but thought Cipro might be safe. This morning I read online that Cipro belongs to a family of cephalexins that are similar enough to penicillin that a person who is allergic to penicillin should avoid it. I blame myself for taking it. I should have done more research before I did. While my medical chart at the doctor's office shows my penicillin allergy, my doctor is completely overwhelmed and at the time he prescribed Cipro, he had just had surgery himself and was in great pain. In the future, any time I am prescribed any medication, I will go online and do extensive research on it before I have it filled.

Much information on Stevens-Johnson Syndrome can be found online at various sites. It is said that various drugs such as INSAIDS, antibiotics, and even anti-convulsant drugs and several others can be the cause. Meanwhile, I intend to stay away from all the drugs I possibly can. This has been an experience I would never want to repeat or see anyone else have to endure.

Post Script: Since this is still available for editing, I will update it now. It is now six days since I wrote the article. I'm almost back to normal except for the side effects of the Prednisone which I will be taking for another month. My doctor said if at any time, my welts start breaking back through or any swelling occurs, to contact him immediately. He is having me taper off the Prednisone very gradually, and the hunger and nervousness are slowly diminishing.

Good news and bad for the little girl who was hospitalized with such a bad case of Stevens-Johnson Syndrome. She is now at home and may get to return to school soon. Unfortunately, there is concern that her eyes are damaged from the illness. It will be a long time before she regains her strength and fully recovers from the horrific experience she has been through.

Since writing this article, I have found information that Children's Motrin and Children's Advil can be responsible for bringing on a hard case of Stevens-Johnson Syndrome. I urge any parent to do much research on these and other children's medications before administering them to your child.