Wednesday, July 30, 2008

Back on Steroids Day 4

Had my kidney ultrasound today. I didn't think it would hurt, but it did. I must be sore inside. Anyhow, should have the results in a few days. Can't be too serious, or I'd be at the emergency room. Got meds. (Got Milk?)

Anyhow, I am back on steroids now (fourth day at 60 mg) and feeling much better, especially my mouth.

Saturday, July 26, 2008

So, I spent most of today in bed. Been using the clobetasol with insufficient effect. My mouth is so bad, I cannot speak. Well, I can speak but it hurts like hell to enunciate. One phone call I was able to handle. But, when I had two other calls, my callers repeatedly couldn't hear or understand me. Finally, decided to go back on the prednisone. Started with 40 mg. because it was already after noon when I made the decision and I wanted to be able to sleep.

So sick all day. Every time I got up, I broke into a sweat. I hate when that happens. I can't work around it, can't distract myself by doing other things. Just got to lay there.

Don't know if I made the right decision, but am desperate. I just started some other new medication yesterday. I had been having intermittent right lower quadrant pain for about 6 weeks. I kept putting the symptoms to the kink in my ureter where it tucks underneath the bladder because of previous surgeries. It had gotten worse and the uptake is that I got to see the urologist on Friday. I have blood in my urine. He thinks perhaps I'm passing stones. (I thought that was supposed to be excruciating?) He gave me RX for antibiotic and Flomax, which is I thought was supposed to be for men only. But apparently it relaxes the ureter and allows stones to pass.

Unfortunately, this evening the Flomax seems to be doing it's job. Kats is here with me (in the shower at the moment). At one point I was in pretty bad shape. I shouldn't have gotten out of bed to watch Hellboy, which we rented from Netflix. So, when it was over and heading back into the bedroom, when a really hard spasm hit. After that we discussed possibility of ER. He worries the neighbors will hear my cry out and think he is hurting me, he says. Have been just laying here chilling out, breathing, calming myself and felt the episode had passed. But as I am writing, I had another spasm. If I can make it another couple of inches it will be out of the bladder soon. I'd rather not go to the ER.

One good thing... my mind is definitely off the mouth!

Friday, July 25, 2008

Ain't one, tis other

I know that dealing with pain always throws me out into the mullygrubs, so then it becomes the quest for appropriate pain control. And that can be touchy mixing certain meds for me. It's either tylenol or dilaudid. All the pain killers in between tweak my brain into migraines or nausea. So, I do a lot of other things for the pain control issues.

I am calling the mouth doctor tomorrow. She gave me her cell number. The OLP has gotten so terrible overnight, I just cant hang on any longer, Time for the prednisone again. and that stuff always makes my depression go away.

So today a visit to the urologist for infection. New guy as my guy was out of town. He was fascinated my the internal hemi and my halfway upside down bladder, etc. So, I'm scheduled for an US to determine if there are stones passing. Now have antibiotics on board. If it aint one thing, it's another

Thursday, July 24, 2008

Esophageal Oral Lichen Planus

Annular lichen planus involving the esophagus: a rare diagnosis.


International Journal of Dermatology. 43(5):373-374, May 2004.
Belloul, Lamia MD; Akhdari, Nadia MD; Hassar, Imane MD; Lakhdar, Hakima MD

A 49-year-old woman presented with a 2-year history of a sore mouth, annular, atrophic patches, and chronic ulcerative vulvovaginitis. For 6 years, she had suffered from dysphagia to solids which was increasing in severity. There was no past history of heartburn or other symptoms of esophageal reflux.

Mucocutaneous examination showed white erosive patches on the buccal mucosa, cicatricial alopecia, dystrophic nails, and annular atrophic pigmented plaques localized on the trunk ( Fig. 1). Genital examination showed atrophic and sclerotic vulvovaginal lesions with synechia. Cutaneous biopsy showed an atrophic epidermis, a dense lymphocytic infiltrate in the upper dermis with degeneration of the basal epithelium, and Civatte bodies. Serologic tests for hepatitis B and C were negative. A diagnosis of cutaneous annular lichen planus with nail, scalp, oral, and genital involvement was made.


The evaluation of cutaneous, genital, scalp, nail, esophageal, and ocular involvement in patients with oral lichen planus.

Oral Medicine

Oral Surgery, Oral Medicine, Oral Pathology, Oral Radiology, & Endodontics. 88(4):431-436, October 1999.
Eisen, Drore MD, DDS a

Objective. Lichen planus, in its classical presentation, involves the oral cavity and skin. This study evaluated patients with oral lichen planus for extraoral manifestations of the disease.

Study design. A total of 584 patients with oral lichen planus were evaluated for cutaneous, genital, scalp, nail, esophageal, and ocular lichen planus.

Results. Extraoral manifestations included cutaneous lichen planus in 93 patients, genital lichen planus in 19% of 399 examined women and 4.6% of 174 examined men, nail involvement in 11 patients, lichen planopilaris in 6 patients, esophageal lichen planus in 6 patients, and conjunctival lichen planus in 1 patient. Thirty-three patients developed lichen planus in 3 or more sites.

Conclusions. Because a relatively high percentage of patients with oral lichen planus develop extraoral manifestations, a thorough evaluation should routinely be performed. A complete history and physical examination by a multidisciplinary group of health care providers uncovers common and uncommon extraoral features of the disease.


Esophageal Lichen Planus: Case Report and Review of the Literature.

Case Report

American Journal of Surgical Pathology. 24(12):1678-1682, December 2000.
Abraham, Susan C. M.D.; Ravich, William J. M.D.; Anhalt, Grant J. M.D.; Yardley, John H. M.D.; Wu, Tsung-Teh M.D., Ph.D.

Involvement of the esophagus by lichen planus is a rarely reported condition. The histologic features of esophageal lichen planus, which may differ from those of cutaneous disease, have only rarely been illustrated. We describe a 58-year-old woman with skin and oral lichen planus who presented with dysphagia and an esophageal stricture that were ultimately diagnosed as esophageal lichen planus. Multiple esophageal biopsies demonstrated a lichenoid, T cell-rich lymphocytic infiltrate, along with degeneration of the basal epithelium and Civatte bodies. Correct diagnosis of esophageal lichen planus is critical because of its prognostic and therapeutic distinction from other more common causes of esophagitis and stricture formation.

See full report


Esophageal lichen planus: the Mayo Clinic experience.

Dis Esophagus. 1999;12(4):309-11.
Harewood GC, Murray JA, Cameron AJ.
Dept of Gastroenterology, Mayo Clinic Rochester, MN 55905, USA.

Lichen planus (LP) is an inflammatory papulosquamous disease which may affect the squamous epithelium of the esophagus. We reviewed six patients with esophageal lichen planus (ELP) seen at Mayo Clinic Rochester between 1984 and 1998. The presenting symptoms were dysphagia (in all six patients) and odynophagia (two patients). Cervical esophageal strictures were seen in four patients; average number of esophageal dilatations required was 15 (range, 10-18). Esophageal biopsies demonstrated the classical histologic findings of ELP in two patients, and a lymphocytic infiltrate in the other four. Concomitant lichen planus (LP) was seen at other sites in five patients: all five had oral LP preceded by ELP symptoms in all five; three had genital LP preceded by ELP symptoms in all three; two had dermal LP, preceded by ELP symptoms in one. Proton pump inhibitors were tried unsuccessfully in all patients. Four patients were started on systemic steroid medication; three had resolution of symptoms within 1 month.

PMID: 10770369 [PubMed - indexed for MEDLINE]


Esophageal Lichen Planus

Archives of Pathology and Laboratory Medicine: Vol. 132, No. 6, pp. 1026–1029.
Vishal S. Chandan, MD; Joseph A. Murray, MD; Susan C. Abraham, MD

Esophageal lichen planus is an under recognized condition, with fewer than 50 cases reported to date. Unlike cutaneous lichen planus, esophageal lichen planus occurs almost exclusively in middle-aged or older women who also have oral involvement. It commonly involves the proximal esophagus and manifests as progressive dysphagia and odynophagia. Endoscopic findings can include lacy white papules, pinpoint erosions, desquamation, pseudomembranes, and stenosis. Histologic features of esophageal lichen planus have only rarely been illustrated. They differ from those of cutaneous disease in several respects, including the presence of parakeratosis, epithelial atrophy, and lack of hypergranulosis. Correct diagnosis of esophageal lichen planus is difficult but bears important therapeutic implications. It is typically a chronic and relapsing condition that can require systemic or local immunosuppressive therapy and repeated endoscopic dilatations for esophageal strictures. Esophageal lichen planus may have malignant potential, as evidenced by 3 patients who developed squamous carcinoma of the esophagus after longstanding disease.

From the Division of Anatomic Pathology (Drs Chandan and Abraham) and the Division of Gastroenterology and Hepatology (Dr Murray), Mayo Clinic, Rochester, Minn. Dr Abraham is currently with the Department of Pathology, The University of Texas M. D. Anderson Cancer Center, Houston

Accepted November 28, 2007

See Full Text


Two siblings with lichen planus and squamous cell carcinoma of the oesophagus.

Case Reports

European Journal of Gastroenterology & Hepatology. 18(10):1111-1115, October 2006.
Schwartz, Matthijs P. a; Sigurdsson, Vigfus b; Vreuls, Willem c; Lubbert, Pieter H.W. d; Smout, Andre J.P.M. a

Lichen planus is a mucocutaneous disease which can also affect the oesophagus. Unlike in oral lichen planus an increased risk for the development of squamous cell carcinoma in the oesophagus has not been established. We describe two sisters with a history of long-standing cutaneous lichen planus who developed oesophageal squamous cell carcinoma, diagnosed at the ages of 68 and 70 years, respectively. In one of the cases, dysplastic areas were identified by high-magnification chromoendoscopy. In both cases, oesophageal resection was carried out with a curative intent. For the first time these sibling case reports suggest an increased precancerous potential of oesophageal lichen planus.


Dis Esophagus. 2003;16(1):47-53.

Lichen planus esophagitis: report of three patients treated with oral tacrolimus or intraesophageal corticosteroid injections or both.

Keate RF, Williams JW, Connolly SM.

Division of Gastroenterology and Hepatology, Mayo Clinic, Scottsdale, AZ 85259, USA. keate.ray@mayo.edu

Clinically significant involvement of the esophagus is uncommon in patients who have lichen planus, a common disorder of squamous epithelium. In three patients who had oral, cutaneous, and esophageal lichen planus, endoscopic intralesional esophageal injection of corticosteroids (in all three patients) and oral tacrolimus (FH506) (in two patients) resulted in improvement in dysphagia, a less frequent need for dilation, and improvement in esophageal inflammation.


Lichen planus in the oesophagus: are we missing something?

Shenfine J, Preston SR
Northen Oesophago-Gastric Unit, Royal Victoria Infirmary,
Newcastle upon Tyne, UK.

Lichen planus of the oesophagus is rare with a predilection for middle-aged to elderly women. There is a potential risk of malignant transformation to squamous cell carcinoma. Squamous cell carcinoma of the oesophagus still accounts for 30-40% of oesophageal cancer cases in the west and is almost exclusively the disease still encountered in the rest of the world. An increased awareness of oesophageal lichen planus is suggested in patients with cutaneous, oral or vulval disease. Endoscopic investigation of patients with lichen planus, possibly initially limited to those with oesophageal symptoms, and consideration of surveillance in patients with proven oesophageal lichen planus, will aid understanding of natural history of lesions and may help detect early stage tumours. Squamous cell carcinoma still accounts for 30-40% of oesophageal cancer cases in the west and is almost exclusively the disease still encountered elsewhere. Lichen planus of the oesophagus is potentially a premalignant condition for squamous cell carcinoma that could be surveilled in order to detect early-stage tumours with a consequent greater chance of cure. Oesophageal lichen planus is, however, rare, frequently asymptomatic and although the majority of cases occur in conjunction with lichen planus in other sites, the oesophageal features may be subtle and easily missed by endoscopic assessment. Furthermore, the histological changes are difficult to interpret and there may be significant underreporting. As a consequence, the true prevalence of these lesions is hard to determine. The difficulties in detection may mean that we are underestimating the frequency of oesophageal lichen planus. Endoscopic detection may be aided by the use of magnification indigo carmine chromoendoscopy and this warrants further evaluation. The risk of malignant transformation is currently unknown but may parallel that of oral lesions at approximately 1-3%. An increased awareness of the condition can only help to identify more cases and increase our understanding of this interesting condition.

My mouth is burning so badly. The sores under my tongue have blistered with white chunks of flesh pulled tight and making it look as though the skin on each end of the sores are trying to grow together like scar adhesions. Pain so bad. Both sides of the tongue are bright red and deeply indented and beneath the tongue it is swollen, so if I try to talk or chew, the act of tongue rubbing against the teeth is very very unpleasant. I know that they say that the roof of the mouth is never affected but I don't think so. I can put my finger up there and gently rub and it hurts too. I just don't have a mirror to see it or a way to get my camera to catch a look at it.

I have been taking the curcumin. Not the brand I was told to get, but one similar. Perhaps it is not the right strength or quality as I really don't see improvement and now it's getting worse enough to drive me nuts.

It's not just the mouth sores, the erosion of my flesh, the tenderness. but since it affects my right side more than the other, I am accutely aware of the gland beneath my tongue on the right side is swollen and painful, and the right of my neck is sore and feels inflammed and when I swallow it feels like something is caught in the back of my throat beneath the furthest back part of my tongue. It hurts! I have been taking some hydromorphone to help with the pain, but feel like this is like killing an ant with a hammer. But tylenol around the clock is not reaching the pain.

So last night I got desperate. I hunted down an old prescription of Clobetasol and slathered it around my mouth. This is a lot like taking a jar of vaseline and rubbing it in, under, around your teeth, gums, inside the cheeks and all over your tongue. Gross, huh? I just don't know how much the mucous membrane can absorb. It seems like pouring grease over the back of a duck. How could it sink in? I take a dry washcloth and pat the insides of my mouth before applying in the hopes that it helps. If my own moisture isn't there to protect the flesh then, maybe it will seep in a little bit. I applied more this morning. I was able to take tea and toast this morning but nothing else until later, a can of coconut water. By the time I was nearly done with it, my mouth was burning. So for dinner I tried cooking a bit of hamburger and put it between two halves of bread. That was okay except for the chewing. At least the burning wasn't too bad, and able to drink some cool water with it.

It is my personal belief that applying medicine to the tongue, though perhaps it might absorb it, the rest of it slides right down your gullet. There are articles that suggest Oral Lichen Planus has been found in the esophagus, so I don't mind that the Vaseline, I mean the clobetasol ends up draining down there. If it is actually coating the esophagus, and if it is being absorbed, then maybe there is possibility of healing. Did it work for me in the past? Well, if I was constantly slobbering the stuff in my mouth all day, it would keep things down to a dull roar, but not eradicate it. Taking systemic Prednisone makes if feel cured. Though I know that Oral Lichen Planus cannot be cured. Why not? Damn it!

Curcumin for Oral Lichen Planus

Monday, July 21, 2008

A very rough and stressful day. I had to go to the Housing Authority for an appointment, which is clear on the other side of the county. Since I awoke not feeling well, the furthest thing from my mind was to take a ride in the car anywhere. Still I made it on a nearly empty tank, had my appointment, which I think was a waste. I think they have made up their mind that I must move out. More stress to face, I suppose, but nothing new in life. Oh well.

I managed to find a gas station, and learned I had ten bucks on me. I stopped, paid inside in advance and went to put the gas in my car. It was a little tough getting it shoved in there, but succeeded. Turned on the right button for the gas I wanted and started the nozzle. A moment later the nozzle popped out of the gas tank and landed on the ground continueing to leak gasoline. I just reacted. I was not about to grab it up. I just couldn't make myself. So I shouted at the guy inside telling him the gas is leaking out. He shrugged his shoulders. So I really shouted very loudly, HELP ME! So he sauntered out to see what the problem was. He picked it up and inserted it back into my car and I got the rest of my gas. (Later, I wondered how much money I had lost). I was pretty shaken on the way home, and took a tranquilizer. I realized that my reaction was based upon the Trabing Fire which was started by an overheated muffler a few weeks ago. The Trabing fire borders upon Watsonville. I am a bit obsessed with all the fires we have had lately. Not for fear of burning but for the very uncomfortable coughing from Asthma. So, I guess that was at the base of it all.

From the time I left home, attended my meeting, got through the gas problem, drove back during rush hour traffic. (Why do they call it rush hour traffic? It should be called hurry up and wait traffic!) I had been away about 7 hours. Exhausted I fell into bed, severe pain, had to drug up and just lay there. My bones ache, especially bothersome is my rt knee. It keeps stabbing when I walk, and gives out on me occasionally, and that just throws the rest of me off. Oddly, both elbows are killing me too. I have NEVER had elbow pain before, but both knees and both elbows have been creeping up on me for several months now. I always notice when the OLP is flared up so is my arthritis and fibromyalgia pain. Low energy.

Well, I called the ortho doctor's office and talked my way into seeing him tomorrow. Perhaps he will take pity on me and give me an injection. I guess that would be cheating, because it would be steroids. I wonder if injected steroids would make my mouth better, even if they are in a different part of the body.

Sunday, July 20, 2008

Clinical Trials for Oral Lichen Planus

These are trials that are open at the date of this blog posting. If you are reading this at some future time, you may still click on the link and it will take you to where some newer Clinical Trials will be listed, and you can go from there:

A Clinical Study of Curcuminoids in the Treatment of Oral Lichen Planus
Oral Lichen Planus
Drug: Curcuminoids; Drug: Placebo

Pimecrolimus Cream for Oral Lichen Planus
Oral Lichen Planus
Drug: Pimecrolimus cream

Safety and Effectiveness of Efalizumab to Treat Oral Lichen Planus
Lichen Planus, Oral
Drug: efalizumab

Clinical Research Core Dental Screening Protocol
Oral Mucosal Disease

A Study to Evaluate the Safety and Effectiveness of Etanercept in Treating Lichen Planus on the Oral Mucosa or Skin
Lichen Planus
Drug: Etanercept

Always seek the advice and supervision of a qualified licensed medical professional!

The information provided on this site has been created as an online journal only. The author is writing from her personal viewpoint and cannot guarantee the completeness or accuracy of the information displayed.

Comments to any of the entries are appreciated.