Saturday, November 13, 2010

Going Off Cellcept

A week or so ago, I called my UCSF oral clinic doctor and updated her on a few things that have been going on with me medically unrelated to Oral Lichen Planus. We discussed when my next appointment is scheduled and she mentioned maybe we would discuss going off the Cellcept at that time. I told her I didn't see how that was going to be possible considering that even if I forget to take it for a day or two, my mouth gets all flared up again. But, still I am open to discussing it in the future.

In the meantime, because I am taking Cellcept to knock down my immune system, I am susceptible to viruses and bacterial infections and who knows what all. The changes are observable in my blood test results, usually with a lower than normal lymphocyte count in particular. There have been a few times when I have felt a little sickly, but nothing I could point a finger at and say what was the diagnosis.

But, this last week, starting last Friday night I noticed a sore throat coming on. Then, Saturday and Sunday, I felt feverish, fatigued, and full blown cold symptoms. I have had plenty of colds in my life, but never one quite so fulminate as this one. I felt like I was hit by a sledge hammer. Since I have had my flu shots, I am sure it is not the flu. Needless to say, my significant other also came down with the cold but was well enough in a day to go to work, while I was bedridden.

I went to see my new primary physician on Monday. (My old one retired.) I have been feeling pretty unsure of him so far. Aside from the OLP, I have a number of other medical problems to deal with, and my last doctor did a superior job of helping me keep a decent balance in my care. Yet, he asked the right questions about my symptoms and immediately ordered anti-biotics. This is the same thing my old doctor would have done under the circumstances, simply because the Cellcept might encourage the cold to turn into an infection, as I mentioned.

What surprised me, though was that he suggested I go off the Cellcept while I am sick with this cold to give my body a chance to fight it off, so I can get well.

I admit I was hesitant to consider it. After all that pain and suffering for so many years, then the best treatment for me came along and the Cellcept has put my OLP to rest quite well and made life more tolerable. Do I want to go back to that? I really struggled with the idea.

However, in the past, I have had some terrible infections for other reasons, and weighing out my options, it was clear to me to go ahead with the plan.

Oddly enough, I have now been completely off the Cellcept (no titering down) since Monday. So, here I am going on the sixth day and have no signs of an increase of my OLP symptoms. Everything is as clear as it was before I got sick.

I wonder if my body is so busy fighting off the cold that it can't be bothered with attacking my mouth. Or is it just a coincidence and this is one of those "naturally occurring remissions" I've been reading about that others seem to have.

I am including a picture here of one of the times that my mouth was flared up.

Tuesday, November 9, 2010

Stress and Oral Lichen Planus

Oftentimes, patients are told that OLP is caused by or aggravated by stress. I understand where this idea comes from when I look at medical articles that say the same thing.

It has been a source of major frustration for me to accept the idea that stress is a cause or contributor to OLP. After all, there are plenty of times life is stressful for all of us and it does not bring on OLP. There have been plenty of times when I've gone through major stress and not have a flare up of OLP. In fact, I have found the stress in my life increases when I have an outbreak of uncontrolled OLP.

Not too long ago I realized that the kind of stress that might trigger an episode of OLP in those predisposed to it, would be of a physiological nature.

Picture shows OLP involvement in the soft palate, the tonsil, uvula, and the retromolar pad. This was very painful to endure at the time.

Here is an abstract of a new article I found interestingon the relationship of "oxidative stress" to Oral Lichen Planus.

Evaluation of oxidative stress and antioxidant profile in patients with oral lichen planus

The aim of this study was to assess oxidative stress and antioxidant profile in patients with oral lichen planus (OLP) using serum and salivary samples and to compare these biomarkers in a group of healthy subjects.

Patients and methods:
Twenty-one recently diagnosed patients with OLP and 20 healthy controls with matched periodontal status were recruited to the study. Total antioxidant activity (TAA) and lipid peroxidation product malondialdehyde (MDA) in both serum and saliva were determined. Univariate comparisons between the two groups were made for quantitative and categorical variables to determine any significant differences.

In OLP patients, total antioxidant defense (TAA) was significantly lower than that in healthy subjects in their serum samples (P?=?0.01). Salivary MDA levels were significantly higher in the OLP group compared with healthy subjects (P?=?0.03). A significant correlation was found between serum and saliva TAA estimates in patients with OLP (r?=?0.714 and P?=?0.0001) and in the control group (r?=?0.69 and P?=?0.001). Significant correlation was also found between serum and saliva MDA values in control group (r?=?0.464 and P?=?0.04). A significant inverse correlation was found between salivary MDA and TAA values in the control group (r?=?-0.598 and P?=?0.005).

The findings of this study suggest an increased oxidative stress and imbalance in the antioxidant defense system in biological fluids of patients with OLP. These findings may reflect the disease phenomenon of OLP rather than a causal effect and their role in pathogenesis and transformation of OLP to cancer, if any, needs further elucidation.

PMID: 21039889

Medline AbstractJ Oral Pathol Med (2010)

Evaluation of oxidative stress and antioxidant profile in patients with oral lichen planus.
S Ergun, SC Trosala,
S Warnakulasuriya,
S Ozel, AE Onal,
D Ofluoglu,
Y Guven,
H Tanyeri
J Oral Pathol Med, October 7, 2010; .            

Department of Oral Medicine and Surgery,
Faculty of Dentistry,
Istanbul University,
Istanbul, Turkey

Department of Biochemistry,
Faculty of Dentistry,
Istanbul University,
Istanbul, Turkey

Department of Oral Medicine and WHO Collaborating Centre for Oral Cancer,
King's College London Dental Institute,
London, UK

Department of Biostatistics and Medical Informatics,
Istanbul Faculty of Medicine,
Istanbul University,
Istanbul, Turkey

Department of Public Health,
Istanbul Faculty of Medicine,
Istanbul University,
Istanbul, Turkey

Sunday, November 7, 2010

Esophageal Lichen Planus Abstract 2

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.

Note: This abstract is from these sources:

Arch Pathol Lab Med. 2008 Jun;132(6):1026-9.
Esophageal lichen planus.

Chandan VS,
Murray JA,
Abraham SC.

Division of Anatomic Pathology,
Mayo Clinic,
Rochester, MN 55905, USA.


PMID: 18517264 [PubMed - indexed for MEDLINE]

Friday, November 5, 2010

Oral Lichen Planus Research Study

I frequently search for information on oral lichen planus in hope that there will be some new discovery to help resolve lesions efficiently, to stop scarring, to reduce pain, to have a cure.

So far, no major changes have occurred. I guess there is not enough interest or perhaps not enough funding to make new inroads.

I guess Lichen Planus is a "turtle" disease. In the story of The Tortoise and the Hare, the motto was slow and steady wins the race. Okay, I guess patience is the answer here for patients. (pun intended).

Today I came across evidence of a new study published in the Journal of Oral Pathology and Medicine. I can't get a copy of the paper, but it appears the abstract is self explanatory.

I was once in a study similar to this in that the treatment was what most people would consider "alternative". This study used Aloe Vera. Before you roll your eyes, continue reading, please.

32 OLP patients were given Oral Aloe Vera to apply directly in their mouth. Another 32 OLP patients were given a placebo, which means they did not get the Aloe Vera. This was done to compare the results, to determine if Aloe Vera would be useful for Oral Lichen Planus.

It didn't work for everyone. But, the percentages were considered good in that it worked for some, and in comparison to those who used the placebo they did better.

What bothers me is that like many research studies I've read about I think that they didn't continue it for a long enough period of time. I doubt very much that the 32 who were taking the Aloe Vera were not all in the exact same condition. Some may have been lighter cases.  Some may have been severe cases. This is not mentioned in the Abstract. So, my thought is if those with more severe cases were given more time, perhaps they would have had more improvement.

These are the authors of the study

N. Salazar-Sánchez
P. López-Jornet
F. Camacho-Alonso
M. Sánchez-Siles

This is their institution
Mariano Sánchez-Siles
Clínica Odontológica Universitaria
Medicina Bucal
Hospital Morales Meseguer
Murcia, Spain

This is the Abstract

Wednesday, November 3, 2010

Oral Lichen Planus Lower Lip


Please note: These pictures are not of my current condition which is greatly improved. I have placed them here for those who might want to see an example of one form of OLP on the inside of the lower lip.

Tuesday, November 2, 2010

Cure for Oral Lichen Planus

I am getting ready to go tomorrow to see the doctor about my mouth. I've been looking through pubmed to see if there is anything new published.

It came to mind how many times I have had to explain this condition to family, friends and sometimes complete strangers.

"Oh, you got mouth sores? Rinse with saltwater and it will go away."

I'm not the kind of person who just shuts up, after a comment like that. I don't call anyone ignorant, or anything like that. I just tell them that these are not normal mouth sores. They are an autoimmune condition and incurable, though treatable. But salt rinses, or baking soda, or vinegar, or peroxide are not going to cure it. If those good old fashioned home remedies were going to cure it, I would have been cured a long time ago, because I have tried them all. People mean well when they offer such advice.

I mean well when I tell them the facts about oral lichen planus.

I have been inundated lately by all these snake oil salesmen. You know what I mean. The quackery that is best sold under the words "miraculous cure", or "the secrets doctors don't want you to know".

Why do people fall for such crap? Well, what can I say? In my desperation, I have tried all the home remedies that have been suggested to me. I have tried many of the ideas posted on questionable websites. I've considered the ads in the back of magazines, the ones that guarantee a cure. I've tried all the "secrets" but, I don't pay money for them, as I don't have it to pay. But, I think about others in my situation who may have the income to invest in quack cures. How much time and money do they put to it and avoid real medical treatment?

And you know what gives a little bit of veracity to some of those quack cures? It is not that they work, but that it just so happens to be a time when a person goes into remission naturally, just when they have been self treating with whatever the quack cure is.

You wanna buy a quack cure? I got just what you want. Send me a check for the largest amount you can afford, and I will tell you the secret ingredients to cure you not only of your oral lichen planus but all of whatever ails you! And I'll take your money to boot! (Only kidding, of course!)

I'll give you a hint of one of the most potent ingredients of my magical cure. It is the tip of the pelage from the rare species, Felidae Felis Catus, which is mixed with another secret ingredient, a powerful antiseptic, antibiotic, anti-microbial, anti-allergenic, anti-oxidant known as oil of Squamata Serpentes.

Please understand tongue in cheek doesn't read well, or is as well understood, as when face to face. So to verify: I am NOT selling anything on this site. No magical cures. Nothing that is too good to be true. No medical secrets known to the ancients. Nothing! What I am giving away free... is COMMON SENSE!

Believe me, if they had a cure for oral lichen planus, the pharmaceutical companies would have patented it by now, and everybody would be happy. Them making a name for themselves in the medical world and us giving them money for their cure for Lichen Planus.

By the way,  pelage from Felidae Felis Catus means tongue of the cat. Oil of Squamata Serpentes means snake oil.

I am in a sarcastic mood this evening. Aren't I? I guess I can afford to be, as my mouth doesn't seem to be in too much distress right now. It's raw on both sides of the tongue, but not terribly painful. I can chew food and swallow without too much trouble. Hot and cold are not enjoyed, though lower heat and warmer cold are fine. Top of my tongue is white coated and has typical striations as well as what I call "bald spots", where it looks like the cilla have disappeared from my tongue. The lips are spotted and behind them, the mucosa are blistered a bit. My gums are pink, but deep red/purple at the base. Aside from all that, I am way better than I was in August.

Can't wait to see the doctor tomorrow and see what she says.

I am reposting this from November 20th 2008 as requested by a fellow sufferer who was taken in by shysters offering her a cure.

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.