Tuesday, May 17, 2011

Sjogren's and OLP, is there a relationship?

Two years ago I was asked to participate in a Sjogren's research study. I have sometimes been questioned by doctor's if that was an issue for me. I have never tested positive for Sjogren's so I have always said no, though I have often had symptoms.

I received a letter asking me to return to have a follow up appointment for the study. Since it is located at University of California, San Francisco Medical Center, it is a long drive for me, about 90 miles. Because of other medical conditions I have, it can be a daunting trip. So, I was able to have my son pick me up and drive me there. (Thank you, Stellar Son!)

Examination of mouth, which involved spitting into a container for five minutes in order to measure how much saliva is produced. Everyone in the study does this.

I have more saliva than a friend I know who has the Sjogren's diagnosis. She has to carry a container of water around with her to sip, in order to talk. I am aware that if I talk for any length of time, my mouth goes dry and it sometimes makes me cough unless I can close mouth and try to get some moisture.

In five minutes I was able to produce what I would consider a sufficient amount of saliva. It will be analyzed, certain criteria will be looked for, and the DNA will be tested. I won't know the results until they send me a letter. I wont get to know everything, but unlike some studies, I will learn something.

Visit to the Ophthalmologist. Since it is a teaching hospital I was given two eye exams. Nice Doctors, but I was tense. I don't like those lights pressing into my eyes. I recently had an eye problem and have had more than my share of annoying stuff put in my eyes. I have dry eyes and constantly have to put eye drops in them.

Since I don't have positive blood test results for Sjogren's, one of the tests they did was to stick paper in my eyelid and leave it there to see if I would produce tears. People who have dry eye will not produce much in the way of tears no matter how much it hurts. I produced some tears. But, apparently it still brings me into the Sjogren's spectrum of dryness.

It was incidentally discovered that I have Superior Limbic Keratoconjunctivitis. Ugh! Something else to deal with! I understand it is not related to Sjogren's, or Oral Lichen Planus.

After that stressed filled appointment, I was given a coupon to go have lunch in the hospital cafeteria. They had a very large selection of any kind of food one could want. But the prices were higher than the five dollars I was allotted. So, I got a juice and a scone. I wasn't very hungry anyways. Too stressed to enjoy a meal.

Besides, at that point I was aware of what I call "the shaky syndrome". The inside of my body feels shaky, even though there is no outward sign of it. It happens when I am physically exhausted or unwell. And, I guess in this case, stressed out.

Thank heavens! After I returned from my meal, I had to wait in the office comfortably seated in the dental chair with my feet up. That was relaxing, and I got some of my composure back.

The mouth doctors returned to test my saliva production in another way. This was to ascertain, how my salivary glands functioned after a meal.

Two little suction devices were attached to the inside of my cheeks high up beside my upper back teeth. I sat there while we waited for saliva to travel down two tubes into a container held by my chin. Occasionally some lemon juice was painted on my tongue in order to stimulate production.

I mentioned how I like to put lemon in my tea and squeeze it on my food. Apparently I was instinctively self treating to get my mouth to be less dry. It was beginning to look as though I do have Sjogren's. But, I'm guessing according to what was said, it is a mild case.

Then there was an examination by a Rheumatologist Nurse Practitioner. That was the least intrusive part of the day. And the most relaxing. Since it had already been determined and documented that I have osteoarthritis, we discussed self care. I also learned some techniques for taking better care of myself. I was told that lowering my stress level is top priority. I wanted so bad to roll my eyes!

Then, a visit from my Oral Lichen Planus doctor. She was not at all pleased with how my mouth looks. It was so well cleared up and healthy looking at our last visit. But now it looks "angry". I really didn't think it was too bad as it has not been hurting very much lately or burning much, and at least I don't see the raw ulcers that I used to have.

The one thing that has bothered me is the lower back tooth where there is a permanent "pocket" where food gathers and I can't get a toothbrush in there. This was caused by the scar tissue of the OLP building up and growing around that tooth.

It gets filled with pus sometimes. I have to clean the area with a Q tip. One day recently, it was really bad and I dug at it until all the pus was gone and it was bleeding. I was able to get my regular doctor to order antibiotics that time.

You may think, "Why doesn't she go to a dentist to take care of this?"

I have no dental insurance. Because of my disabilities, I do not have funds for going in for treatment. That is why I self treat.

We discussed my flared up mouth and bad tooth "pocket" at length. I have to return in two weeks. I was surprised she considered it that serious. But, after all these years of seeing her, I will be there for my appointment. Thank heavens I have coverage for this.

In the meantime, I will be swishing and gargling with Chlorhexidene daily, as a substitute for an antibiotic. I will need to carefully brush the "angry" area of my mouth near that tooth pocket. Now, that will be a problem, because I cannot fit a toothbrush, even a baby toothbrush into that area. Still, I will try. Plus, my handy-dandy Q-tips will be put to good use. I am to apply Clobetasol ointment to the area as well to use in place of a steroid. It will also be a problem because now that my mouth has been messed with my pain level is at the screaming level and I know it's going to take days to calm it down.

One of the research doctors came back in with her camera and a student to teach, and she took pictures of the top of my tongue because "the scar formation is so interesting". I just had to laugh!

Truly, this did not bother me, as some have asked me. I am glad to help out science so to speak. Maybe someone will learn something from me that can help others. That is why I signed up for the study! If what I have been through can help just one person, it is all worth it.

Then, many vials of blood were drawn for the research. Some of it will be frozen and placed in storage for future biomedical research.

Then it was time to do the biopsy. I've had one in the tongue before. It's no picnic. So this one on the back of my lip down by the bottom of my teeth was a piece of cake, comparatively. That area was numbed with Novocaine before pieces of salivary glands were removed for the study.

I was totally exhausted. I had been there from 10 A.M. until 4 P.M. Thank heavens I could call my son to pick me up and take me home.


Anonymous said...

I appreciate your blog and the fact you did go through this and were willing to share.

It would be helpful to hear the outcome of the lip biopsy and whether or not you did ever have an SSB & SSA test. While we read that the test only has a specificity range of approx 50 - 60% accuracy, and that on average it take about 8 years to obtain a Sjogren's diagnosis - just wondering how you fared? Thanks

Elizabeth Munroz said...

In response to your comment:
Thank you for your appreciation. :)
As for the actual results of my lip biopsy, I do not know what it says specifically. After the study was completed, and by whatever criteria they determined the outcome, I do not have records to examine. However, I do have a letter sent to me stating that I most definitely have a diagnosis of Sjogren's. Apparently these recent studies gave them more information to go on than the previous testing two years before. It sure seemed to me to be much more intensive testing than the first time.

I have had SSB & SSA tests in the past, as well as tests for Lupus. Over the decades there were always symptoms that indicated one or the other when I had "flare ups", one of which ended me up in the hospital. But those test results were never positive. One time a Lupus test was just over the limit, but not enough to make it a definite diagnosis back then, when I was in my late forties.

Presently, I see a Rheumatologist who has a very good understanding of these issues, and treats me accordingly. For the first time in my life I am taking Pilocarpine pills which help immensely! My mouth has moisture! What a relief! Unfortunately, it does nothing for my dry eyes. However, I use Restasis for that problem and artificial tears.

Since I wrote this posting to which you have responded, I have been diagnosed with osteoporosis, obviously due to the long term use of prednisone. A small price to pay for the comfort I had while it treated my OLP.

I have also been diagnosed with Chronic Myelogenous Leukemia. I often wonder it it has to do with my previous treatment with Cellcept that was so much more successful than the prednisone for quelling my OLP. Though there is a warning that Lymphoma can be related to Cellcept (a very very small percentage), Leukemia is entirely a different entity.

If you would like to have more information, I am happy to accommodate. You may email me at elizablest at gmail dot com.

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