Stevens Johnson Syndrome..PLEASE READ..

[jodymarie aimee]

There is this really nice chap at the gym. Jim L, mid 70s...always genial and ready with a joke. I think he studies a jokebook at nite, as he comes prepared. I greet him every day. Anyhow, one day I was reading a VietNam book and something hit me, so when he stopped to say hello, I read it to him. Well, HE was a helicopter medic in VN..

Last year he hadn't been there for a month or so...He returns and asks if I missed him. With these older folks you just assume they went to FL or AZ or something. NO. He got a disease. He woke up and his face and lips were black and blood all over the bedding. Painful..Rushed to ER, then to Marshfield. They were stumped. They told him he must be allergic to some pills, so he went home and threw all his vitamins away.

Then he had a dental appt at the VA...the dentist knows what it is...He has seen it before...He was exposed to Agent Orange 6x...he had originally been told 3x...This lives in you forever. A cancer that moves around and will eventually kill you.

Now, the Docs know what it is...Stevens Johnson Syndrome....very rare and they give him meds which have horrid side effects. Horrid. If he doesn't take them, they tell him he will die. He has gone to the VA 4x now for some kind of immune boost deal....

Lately, his face looks fine and so do his lips...but Thursday he draped his arm over my machine and holy mackerel....his arms and hands look like he has leprosy. He said it is all over his body now. He said "Jody, you know what kind of a life I have had, this is the worst thing that ever happened to me" Now, this guy was getting shot at in VN picking up bodies...

The last 4-5 weeks I have not been able to swallow, coughing, hoarse, GERD...so Doc prescribes me OMEPRAZOLE...now I weigh #93 and am old. I get all the side effects of everything and bad. She should know better with me by now. So I take it for 3 days, 3 days a brick of a migraine on my left side. I throw the pills away. Then I read the side effects paper and guess what? Stevens Johnson Syndrome...jumped off that paper at me. I told Jim about that today.

This scares the heck out of me...the drugs they just hand out nowadays...here is a pic of what his arms looked like today...his are purpley and deep, tho...like tiny volcanoes..I have got to do a piece on this....p.s. He is a DEM, and a good one ..



Image result for stevens johnson syndrome doesn't show up..sorry.

[Demovictory9]

1. thread is a bit confusing, are you saying you now have the syndrome?

[jodymarie aimee]

2. No, it is a side effect for GERD med.

took med for 3 days, 3 days migraine, threw them away...THEN read papers...

[uppityperson]

3. It's usually caused by an allergic reaction to a drug, though sometimes happens after an infection

My child had an allergic reaction to a medicine as a toddler, was the next step down from Stevens Johnson, didn't get skin peeling. It was very frightening. Some meds are more apt to cause it, but it is a very rare happening. It's listed usually as a possible rare side effect because of liability issues. The most common med it results from are antibiotics, which more often save lives.

So yes, it's a weird thing, but rare.


https://rarediseases.info.nih.gov/diseases/7700/stevens-johnson-syndrome

Stevens-Johnson syndrome (SJS) is a very severe reaction that mainly affects the skin, mucous membranes, and eyes.[1][2] It is often triggered by particular medications.[3] This syndrome is an emergency medical condition that usually requires hospitalization and can be life-threatening.[4] Symptoms may include fever and flu-like symptoms, followed by painful blistering of the skin and mucous membranes. SJS may also cause severe irritation to the eyes and damage to the cornea, which can lead to permanent eye damage and vision loss.[3] SJS occurs twice as often in men than in women, and most cases occur in children and young adults under 30. However, it can develop in people of any age.[1] Having certain variations of a gene called HLA-B increases the risk of developing SJS.[3] Treatment focuses on eliminating the underlying cause, controlling symptoms, and minimizing complications. Treatment may involve standard therapies used for major burns, pain medications, and various eye treatments depending on the extent of eye involvement.[4][5][6]

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Stevens-Johnson syndrome is usually caused by an allergic reaction to a drug or medication.[1][2][4][8][5] The most common medications to trigger the condition are antibiotics, followed by analgesics (pain relievers), cough and cold medications, NSAIDs, anticonvulsants, and anti-gout drugs. Infections can also cause Stevens-Johnson syndrome. Viral infections that may precede the condition include herpes (simplex or zoster), pneumonia, HIV, and hepatitis.[4][5] In some cases, the underlying cause is unknown (idiopathic).[2][8][5]

Some people with Stevens-Johnson syndrome have a genetic predisposition which increases their risk of developing the condition in response to triggering factors such as medications. The genetic variation most strongly associated with Stevens-Johnson syndrome occurs in the HLA-B gene.[4][5][3] This gene is part of a family of genes called the human leukocyte antigen (HLA) complex. This complex of genes helps the immune system distinguish the body's own proteins from proteins made by foreign invaders (such as viruses and bacteria).[3] Variations in several other HLA and non-HLA genes have also been studies as possible risk factors for Stevens-Johnson syndrome.[5][3] However, most people with the genetic variations that increase the risk for Stevens-Johnson syndrome never develop the disease, even if they are exposed to drugs that can trigger it. It is likely that there are other factors involved in this complex process which determines whether a person ultimately develops the condition.[3].....(more)

https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936

Stevens-Johnson syndrome is a rare, serious disorder of your skin and mucous membranes. It's usually a reaction to a medication or an infection. Often, it begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. Then the top layer of the affected skin dies, sheds and then heals....
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Causes
Stevens-Johnson syndrome is a rare and unpredictable reaction. Your doctor may not be able to identify its exact cause, but usually the condition is triggered by a medication or an infection. A reaction to medication may start while you're using it or up to two weeks after you've stopped using it.

Medication and therapy causes
Drugs that can cause Stevens-Johnson syndrome include:

Anti-gout medications, such as allopurinol
Medications to treat seizures and mental illness (anticonvulsants and antipsychotics), with added risk if you also undergo radiation therapy;
Pain relievers, such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve)
Medications to fight infection, such as penicillin

Infectious causes
Infections that can cause Stevens-Johnson syndrome include:

Herpes virus (herpes simplex or herpes zoster)
Pneumonia
HIV
Hepatitis A

[Glorfindel]

4. Scary stuff, jodymarie

Thanks for sharing the info. I had never heard of it. I spent a year in Vietnam, but as far as I know, no agent orange exposure. However, according to the website, herpes simplex and herpes zoster infections can lead to Stevens-Johnson syndrome. I have had both, plus Bells' palsy, which is another herpes infection as I understand it.

[lunasun]

5. As soon as I saw the OP title I clicked thinking this person needs to know this can come from

medication prescribed but I see you found that out already and it's not you . Also when you read any list of side effects given as an insert, don't assume the info means you would only get one
it could give you many of the ones listed and may not go away after you stop taking the medication