canker sores and autoimmune disease

[shalomqua]

I have suffered from chronic canker sores for 25 years starting at age 14.  

The reason I'm leaning toward an autoimmune disease is because of my other symptoms.  Over the years, along with the canker sores, I've had genital lesions, rectal fistulas, pustular skin lesions, eye redness and blurriness, migraine headaches, ocular migraines, chronic hematuria, and a negative herpes culture.  The only time in the past 25 years that I've been canker sore free is during my 3 pregnancies.

I had 2 biopsies taken from my mouth and the biopsy report indicates that it's likely erythema multiforme.  I talked to the pathologist who read my biopsies and he believes I'm having an autoimmune response to a herpes virus that is dormant in my system.  The recommended treatment is Valtrex for 4 months along with high doses of pred for 20 days.  If lesions reappear after 20 days treat topically until through with Valtrex.  If still no improvement, move forward with allergy testing.  They also recommend a herpes titer.  What is the BEST test to determine if you have a herpesvirus in your system?

I've taken Valtrex in the past for one month with no results.  Steroids do give me relief but as soon as I quit taking them the lesions in my mouth are back.  

Any opinions as to what I might suffer from, or if the treatment plan I describe above sounds reasonable?  

[Kevin Pho, MD]

There are several ways to diagnose herpes.  One would be a viral culture, where the lesions can be cultured.  Immunofluorescence staining would be another options.  Serology via blood tests would be a third option.  Finally, a Tzanck smear can be considered as well.  There is no 'best test', the diagnosis is based on several of the aforementioned tests.

If there is concern about a rheumatological disease, leading to the skin lesions, you can consider an ANA and rheumatoid factor test to evaluate for lupus or rheumatoid arthritis.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[shalomqua]

Wanted to clarify that I took Valtrex 2 years ago for one month on the advice of an ENT and had no improvement.

Also, I had a bit of bloodwork done this month as well. ASO test - slightly elevated, ANA test - negative, and HLA B27 - negative.

Can't get a doc to view my symptoms as being related, they all want to treat my symptoms separately.  

[shalomqua]

My dermatologist initially suspected behcet's disease.  What are your thoughts?  My symptoms' match BD much more closely than EM.  It's my understanding that oral lesions are a rather uncommon manifestation of herpes induced EM.

[drkevin]

Behcet's disease can be considered as well.  There is no definitive diagnostic test for this, the diagnosis is normally made via clinical suspicion.  

Investigational tests like serum intracellular adhesion molecule-1 (ICAM-1) can be done - but this is not definitive.  

The presence of oral ulcers, plus two of the following symptoms suggest Behcet's disease:

# Recurrent genital aphthae
# Eye lesions (including anterior or posterior uveitis, cells in vitreous on slit lamp examination, or retinal vasculitis, observed by an ophthalmologist)
# Skin lesions (including erythema nodosum, pseudo vasculitis, papulopustular lesions, or acneiform nodules consistent with Behcet's)
# A positive pathergy test (a papule 2 mm or more in size developing 24 to 48 hours after oblique insertion of a 20 to 25 gauge needle into the skin)

These options can be discussed with your rheumatologist or personal physician.

Thanks,
Kevin, M.D.