Bullous Pemphigoid: A Rare but Treatable Autoimmune Skin Condition
This page describes my personal experience with Bullous Pemphigoid, a rare autoimmune skin disease often called the blistering disease. Symptoms include painful, itchy blisters that become infected.
Warning! This page contains pictures of blisters. If you are squeamish, please do not read any further.
Bullous pemphigoid is a rare but treatable skin condition caused by a disruption of the immune system. The primary symptoms are painful, itchy blisters that fill with a yellowish liquid. For that reason, it is called the blistering disease.
The Mayo Clinic web site has this to say: Bullous pemphigoid occurs when the immune system mounts an attack against a thin layer of tissue below your outer layer of skin. The reason for this abnormal immune response is unknown.
The condition can happen to anyone, but it is most common among seniors and the elderly. The cause is unknown. The treatment involves the use of corticosteroids such as Prednisone.
Since it is a rare condition, it can be difficult to diagnose.
The picture is one I book when the disease was active with me. It shows three smaller blisters on my foot.
Take a Poll About Bullous Pemphigoid
My Experience with Bullous Pemphigoid
Unpleasant and Easily Mistaken for Insect Bites or Allergies
In the summer of 2012, I was diagnosed with Bullous Pemphigoid. I began treatment. It was an uncomfortable and disagreeable journey getting to this point.
Here is how it happened with me.
One pleasant summer day, I developed a few faint red marks, like those on the picture. They itched but were small and unimpressive. I gave them no mind, thinking them some sort of insect bite. I scratched absent mindedly the way one does.
The marks continued to appear and to worsen, taking on the appearance of mosquito bites. I knew I had not been bitten by a mosquito, but thought it could be bites from some other insect. I am somewhat allergic to insect bites and I attributed the increasingly extreme reaction to an insect allergy.
I began to feel unwell. I had mild symptoms of chills and hot spells, tiredness, puffiness and general malaise. I continued to attribute this to an allergy to insect bites.
The "bites" were insanely itchy and painful. Some spread out with huge red areas in the surrounding skin.
I began to worry.
I also wondered if the spots were blisters from the sun. I have experienced this in the past.
A spot on my finger became infected with a blistery running sore and with streaks of red and black emanating outward. I could not close my hand for the swelling. I visited a walk in medical clinic where I was diagnosed as having spider bites. I came home with a prescription of ointment designed to treat the infection.
I do not blame the physician for this diagnostic error. Seen in isolation, the spots are easily mistaken for an infected bite.
Water Filled Blisters Appear
Itchy, Painful and Nasty Looking
I noticed a pattern of new spots appearing every two days. I have no idea if that pattern is common, but it happened that way with me. The spots began to develop in to distinct, fluid filled blisters. The picture shown is one that I took of a bullae on my knee.
Eventually, the blisters would burst and would drain fluid for several days. Some became infected. I continued to dress and bandage the infected ones and use the ointment that the physician had prescribed.
While this was going on, I suspected any number of things -- bedbugs, bites from no seeums, fleas from the cat (who did not have fleas), ticks, food allergies, sun allergy, allergies from laundry detergent, hives, boils, shingles and other viruses of unknown origin.
I had booked an appointment with my family physician but there was a waiting period before I could get in.
By this time, a month had passed, and I had approximately 25 blisters in varying stages of onset and healing.
Getting a Diagnosis
Take Pictures to Show to the Physician
The photograph shows two bullae on the wrist that are draining of the fluid. Both are infected.
Before visiting my family physician, I had used my iPhone to take pictures of the bullae in various stages of development. As it turned out, all of the bullae had either burst or were not yet at the stage of blistering at the time of my appointment. Believing that the physician would benefit from seeing the blisters at all stages, I took the phone with me to show her the progression.
My physician said that the pictures were invaluable in helping her with the diagnosis. Without them, she would have referred me to a dermatologist.
My physician explained that since this autoimmune skin condition is rare, she had never seen it before. However, she remembered studying the condition in medical school. Before making the diagnosis, my doctor left the room to do some research. She returned with another physician to provide a second opinion.
I am impressed with her thoroughness. She referred me to the Mayo Clinic web site for additional information.
If you want to know more about bulbous pemphigoid, I suggest using the Mayo Clinic site as your resource. My physician warned me that some of the info about this condition that appears on the Internet is inaccurate.
Prognosis and Treatment
Bullous pemphigoid is described as a chronic condition that can last for an indeterminate time. Medical treatment is more a case of managing or minimizing the symptoms rather than curing the condition.
The drugs used to treat this condition require careful monitoring by the physician. Please refer to the Mayo Clinic web site for additional information. I am not a physician and do not want to risk giving incorrect information about the standard treatment modalities.
Personally, I chose to combine prescription medication with a couple of alternative therapies that I practice and rely on. Specifically, I used the Silva Method, a type of mind body healing, combined with Emotional Freedom Techniques and other forms of energy healing.
Duel Debate: Would you Treat With Alternate Therapies?
If you had bullous pemphnigoid or another autoimmune skin condition, would you use prediisone or other similar drugs? Keep in mind that the side effects can be unpleasant and there can be serious implications for long term usage. Or would you turn to alternative therapies?
How would you treat this condition?
Bullous Pemphigoid Links on the Web
- Overview - Bullous pemphigoid - Mayo Clinic
Bullous pemphigoid — Comprehensive overview covers symptoms, treatment of this blistery skin condition.
- Medscape: Medscape Access
- Bullous Pemphigoid: Get Facts on the Blistery Skin Condition
Get information about bullous pemphigoid treatment, symptoms, causes, and more. This skin disease causes blisters on the skin and sometimes lesions in the mouth.
- Bullous Pemphigoid - American Osteopathic College of Dermatology (AOCD)
Bullous pemphigoid is a chronic blistering of the skin. It ranges from mildly itchy welts to severe blisters and infection, and may affect a small area of the body or be widespread.
Factoids About Bullous Pemphigoid
These factoids are as reported on the International Pemphigus & Pemphigoid Foundation Web site. (IPPF)
- Bullous Pemphigoid and Pemphigus Vulgaris are two different diseases that resemble each other. Both are autoimmune skin diseases. Pemphigoid is more likely to inflict the elderly, and is considered less severe than pemphigus because the blisters are less likely to break, therefore reducing the likelihood of infections.
- Pemphigoid and Pemphigus are NOT contagious.
- IPPF estimate that pemphigus occurs in as many as 5 per hundred thousand to as few as one per million, depending on the type of pemphigus and the population being studied.
- Prior to the development of corticosteroid drugs, approximately 70% of people with pemphigus died within a year.
- Most people who receive treatment will go into partial or total remission within about five years.
Bullous in Remission : Update
To give the update on my experience with this autoimmune skin disease, I tapered off the Prednisone after a few weeks, since it was only marginally helpful and since I was not willing to increase the dosage.
Instead, I used the alternative therapies that I have mentioned earlier. After a few months, the disease went into remission. It returned the following two summers, but in a much milder form. During those two summers, some itchy spots appeared. They itched and they caused some pain, but they did not blister and they did not get infected.
I don't know why the condition shows up in the summertime. The spots have appeared during cool weather as well as hot weather, so it doesn't appear to be related to temperature.
I continue to use my alternative energy healing methods, and they continue to work successfully.
© 2012 June Campbell
Comments, if you Please!
Nicole on July 27, 2015:
This has been extremely helpful and leaves me more optimistic. I am 28 years old and was diagnosed with bullous pemphigoid today. I am curious to know how much prednisone you were taking? My doctor has recommended an insane dosage and I am unsure what to do at this point. Thank you.
June Campbell (author) from North Vancouver, BC, Canada on October 26, 2012:
@JenwithMisty: Thank you so much for letting me know this. My main reason for creating this lens was the hope that it might help someone else obtain a diagnosis. I think a great many physicians may not recognize bullae, given the rarity of the condition. I am fortunate that my doctor was astute. There is a biopsy that can be done to prove the diagnosis for sure. Perhaps your mother could mention that to her physician (perhaps a different physician would be an idea here, given the first one's rudeness).
Jen withFlash on October 26, 2012:
I have to add another comment here and a sincere thanks for this lens!!! After I left here, I couldn't stop thinking about it. I finally figured out why - my mom has been complaining to me about these exact symptoms for the last 2 years!! She thought they were bites or allergies or hives but nothing has ever particularly helped them. The last time she went to the doctor's office, he was rude and basically told her that they were being caused by a fungus because he didn't know what they were. Anti-fungal didn't do a thing to help! We went over all the symptoms from a few different website and this is exactly what she has!!! Thank you for helping us solve this mystery!! With my history of graves disease, this makes perfect sense since they are all autoimmune related.
Jen withFlash on October 24, 2012:
This is really interesting and I'm going to try to find some shea butter too!
June Campbell (author) from North Vancouver, BC, Canada on August 13, 2012:
@LynetteBell: So far, its proven to be stubborn, but I am optimistic.
LynetteBell from Christchurch, New Zealand on August 13, 2012:
Hope you are feeling much better. It looks like a nasty affliction.
June Campbell (author) from North Vancouver, BC, Canada on August 05, 2012:
@anonymous: Thank you Tipi. As someone who practices holistic healing, I do believe you are correct when you mention the body's way of getting rid of toxins. I will also be on the lookout for shea butter lotion.
anonymous on August 05, 2012:
I confirm what Ladymermaid said about shea butter lotions, and the soaps are wonderful as well for skin conditions. Its seems as we get older our bodies go through so many changes. I just wonder if its our bodies way of getting rid of toxins that need to come out. I don't know, just wonder with some of the ones I have had. - This is an interesting article for sure. If I come up with any more information on the topic, I'll be sure to let you know. - May this have come only to pass, and you will have speedy recovery from the breakouts. :)
June Campbell (author) from North Vancouver, BC, Canada on August 04, 2012:
@Lady Lorelei: Thanks for that tip. I will look around for shea butter. I suppose it is sold in natural health food stores?
Lorelei Cohen from Canada on August 04, 2012:
Wow I hope you are feeling better. I can certainly understand inflammatory skin issues. About a year ago I started looking into more natural lotions and discovered that shea butter lotion and cocoa butter lotion contain natural antioxidants that absorb through your skin. Shea butter is a natural anti-inflammatory. Since I began using the shea butter my skin issues have been minimal so it really does work. I now keep a jar of it in every room of my home and am constantly applying it throughout the day. Just thought I would share my experience.