Is it ‘steroid blisters’ or Eczema herpeticum?

If you’ve ever had experience of a cold sore you’ll be familiar with the herpes simplex virus, and the painful blisters that come with it. Eczema Herpeticum (EH) is a nasty and very contagious virus that can get into broken eczema skin, causing blisters much like the cold sore virus in appearance. However it can also occur on healthy skin, it’s not just eczema skin that is affected. People who have never had eczema CAN still get eczema herpeticum. It’s caused by the herpes simplex virus that can lie dormant in the body, ready to jump into action when the person is run down or their immune system challenged.

But are all blisters the same? and how do you tell them apart?

What is eczema herpticum?

Eczema herpeticum is caused by the same virus as the cold sore – herpes simplex. It’s a very dangerous virus to catch and must be taken very seriously because it can spread across the whole body and in very rare cases can be fatal if left untreated.

For a person with eczema this virus can quickly and easily spread across the skin, whereas the cold sore will be confined to the mouth and lips. It can also make the person with eczema herpeticum feel very unwell with a high temperature. It’s important to use separate flannels, towels and bedding because it is very contagious. If you do get this virus you should also try very hard not to spread the virus through scratching and passing it to other areas of broken or impaired eczema skin barriers.

Eczema herpiticum is also very painful. Having experienced cold sores, shingles, eczema herpticum (EH) and eczema steroid blisters, I can confirm they all feel remarkably similar, so that even the person feeling the onset could be confused about what virus is at play.

What are ‘steroid blisters’?

These blisters are commonly found on eczema skin that has been treated with topical steroids, particularly if the person is trying to taper off or withdraw from topical steroid treatment. The blisters appear very similar in appearance to the EH blister and are also extremely painful.

For this reason, they are often misdiagnosed. Steroid blisters will heal on their own in a few days’ time.

These blisters would be fluid filled, excruciatingly painful, so much so that I used to cry myself to sleep. They would often strike at nighttime as I was going to bed and EVERY time I would promise myself I would go to the doctor the next day… only to find they would be drying up and not so painful in the morning. It never made sense. Now I know what they are it finally clicked into place.

What are the main differences between EH and eczema steroid blisters?

I’m not a doctor and can’t find much written about this but from my own experience, there are a few ways to tell the difference:

• Steroid blisters can be spread but they are not as viral at spreading as EH. They are typically seen on the face whereas EH can spread across the whole body.
• Steroid blisters can heal in a few days
• EH can take a few weeks or longer to heal.
• Herpes simplex is not involved in the steroid blisters. A simple test for the virus should help to identify if it is EH.
• It could also be a staph infection which can also cause blisters

“A patient reported that she was diagnosed with eczema herpeticum and in a few days or so was much better taking aciclovir. I have seen and heard about this for 15 years and written repeatedly that this is not herpes, just steroid blisters. People are scared unnecessarily with hospitalisations, un-needed medications, expense accrued. Patients going through Red Skin Syndrome (RSS) do not have eczema, they are in topical steroid withdrawal. Herpes simplex needs 7-12 days of treatment to get better or cured. Steroid blisters get better quickly on their own. I have not seen a case of EH n 40 years – all my patients just had steroid blisters. Doctors should be taking a positive viral culture to diagnose Eczema Herpeticum and the herpes simplex virus, but they don’t.”

Dr marvin rapaport, MD

Thank you Bee

Thanks to my friend Bee the Brave for sharing this quote above on instagram. These blisters were one of my worst TSW symptoms, but I’d never heard them mentioned by a specialist or realised they were so common. I had wrongly thought that they were the herpes simplex virus and that maybe I was just fighting it off fast. I had these steroid blisters over and over again during the worst parts of TSW but they healed quickly, and I didn’t get the scars and length of blister life span I had when I DID have eczema herpeticum. My case of EH was triggered by going onto Methotrexate in 2019. Methotrexate also caused a terrible bout of shingles later that same year, at which point I ceased to take the immunosuppressant. My dermatologist was keen for me to start taking Methotrexate again when the shingles had healed but that was one warning sign too many for me.

Steroid blisters are another symptom of TSW

I have not seen ‘steroid blisters’ listed as a symptom of topical steroid but I’d like to add that to the mix! Seeing Dr Marvin Rapaport mention them has made me feel a lot calmer and I wish I’d seen this when I was experiencing recurrent steroid blisters. I was perpetually terrified that it was EH which I know is potentially serious. I wish I’d know so this blog is for anyone going through topical steroid withdrawal who may experience this. Doctors may wrongly diagnose it as EH because it looks very similar. Insist on a viral swab to be done to put your mind at rest.

How should you treat both conditions?

Having experienced both of these skin conditions, they can be treated in a similar way, with a few differences if you get the more serious EH.

• If you are diagnosed with EH you can treat it with antivirals if caught early enough.
• Take painkillers to help with the pain.
• Dead sea salt baths can help to dry up the blisters.
• Apple cider vinegar – Dilute a capful in warm water and use to gently clean the area with a soft bamboo cloth, flannel or cotton wool.
• Don’t touch – Avoid touching them if you can.
• Try not spread it – If you have touched the blisters wash your hands and try not to spread the virus to other parts of your body
• Heat – Holding a hot water bottle on the blister can be soothing.
• Cold – Similarly, an ice compress can also help to stave off the pain.
• Box breathing – this can help you to relax, release tension and allow you to perhaps detach from the pain a little. This is a very painful condition, but slowing your breathing and relaxation can help. To do box breathing you breath in for less than you breathe out and you can experiment with it. For instance. Breathe in for 5 seconds, out for 8 seconds and hold for 5 seconds. Then repeat, as if you are following the sides of a box. If that timing isn’t right for you can can modify it, as long as you are concentrating on breathing in through your nose slowly and out through your nose slowly. Relax your shoulders and also try to release tension in your face, brow, mouth, lips, tongue etc.
• Distraction – Find something you enjoy to distract yourself, anything from drawing or reading to doing a puzzle, painting or watching a film.
• Rest – your body needs rest. Let it rest.

Skin infections and staph aureous infections can also look similar

Just to add confusion to this debate, infected staphylococcus aureus can also show up as tiny blisters that are infected. If any blisters last more than a few days, begin to spread and throb and are really painful and surrounded by inflammation you should seek medical advice and help. Don’t be scared of doctors. Infections can be treated with creams that do not contain steroids, e.g. Fucidin (don’t get Fucibet or Fucidin H (hydrocortisone) if you are going through topical steroid withdrawal. Ask to be prescribed a steroid free topical anti biotic cream. You may also be prescribed oral antibiotics. The important thing is to also ask for a swab test to be done so you can confirm whether it is bacterial or viral.

Don’t be scared of getting help

I hope this blog helps someone, because I really wish I’d know this was a ‘thing’ when it was happening to me. Topical Steroid withdrawal is intense, confusing, repetitive and exhausting. Sometimes nothing makes sense. Knowing when you need to seek expert medical attention is so difficult because infections are a high risk. If in doubt get it checked out.

Did you find this helpful? Did you get steroid blisters? And have you had Eczema herpeticum?

You may also be interested in reading:

• Topical Steroid Withdrawal – Frequently Asked Questions
• The Shape of Skin – poems about eczema and topical steroid withdrawal
• Seven natural bath treatments for eczema