Friday, December 6, 2013

Teeth

The beat goes on… last month my dentist informed me that I needed three new crowns.  The margin of the teeth between the existing crowns and the gum line had developed cavities.  This occurred in less than six months.  He used the latest technology to make the crowns while I waited in his office.  The new crowns now cover the root down to the gum line. 

He commented on how dry my mouth was, and he recommended an expert in the field, Dr. Ingrid Proenca.  Here are the recommendations she made, which you might find useful.
 
  1. Use xylitol gum and lozenges/mints, usually available at health food stores.
  2. SSwitch from my current prescription of pilocarpine (Salagen) to cevimeline hcl (Evoxac) for dry mouth.  Unfortunately, even the generic cevimeline hcl is very expensive in my drug plan.
  3. Brush after every meal.  Use high fluoride toothpaste.  I use Colgate Prevident Dry Mouth Flouride toothpaste, available as an Rx from your dentist.  Graduate to fluoride trays if dental caries gets worse.
  4. Be aware of the possibility of gum ulcers.  These can cause gum and bone cancer if left untreated.  If a gum ulcer develops treat with chlorhexadine in a water base (not alcohol base).  Use a q-tip and apply to the area for 2 weeks, after brushing.  I got some of this just in case.
  5. Avoid sugars, acids, and don’t let them stay in your mouth (e.g., sipping any type of sugar-based or diet soda all day is a no-no).  Sip water instead.  I plan to check the market for high-alkalinity water or additives to combat acid in my mouth.
  6. Check pH balanced diet plan.
  7. Watch out for lymphoma, which may start around the jaw and neck.
  8. Use Benadryl-based products sparingly as they dry out the nose and mouth.  Occasionally, I’ll take a Tylenol PM to help me sleep, but it contains Benadryl, so from now on I’ll use melatonin, a natural product, if I need to.

I found out via a physical exam that my Vitamin D level was sky high, so my rheumatologist reduced my dosage from 5000 mg per day to 1000 mg.  She also reduced my dosage of methotrexate because of an elevated liver enzyme.  And the beating goes on…

-- Pete

Friday, September 13, 2013

Hands


My latest problem with Sjogren’s syndrome started in March this year when my fingers felt tinglier, if there is such a word, and the knuckle of my left pinky finger seemed to swell a bit.  I noticed an itching sensation around my wedding ring and, pulling it back a bit, I found the skin was raw, reddened, and a bit crusted over.  I decided after a week to remove my ring and not wear it a while to let the skin heal.  I found it difficult to remove it.  My finger and knuckle had swollen.

I noticed the joints in my left hand fingers were a bit swollen and sore.  As the days turned into summer, I began to experience the same issues in my right hand.  My rheumatologist recommended ibuprofen to see if it would help.  It did not.  My condition worsened.  However, in spite of the swelling, I found I could use my hands to do work around the house.  I am a do-it-yourselfer, and I love working on little projects and working around my house.  My wife and I completed a remodel of the garage during the spring. 

I notice the pain is worse in the morning and improves a bit during the day, but it never lets up.  At night, I often feel shooting pains in my fingers on my left hand.  I took to wearing a splint while sleeping, which seems to help.

In late June, my rheumatologist prescribed methotrexate 15 mg and folic acid 1mg.  Methotrexate is an older drug still used as a treatment for autoimmune diseases such as arthritis.  It is a toxic drug, so blood tests are required periodically for liver and kidney functions.  It is prescribed once a week because of its long half-life.  It takes up to two months for methotrexate to kick in.  Folic acid improves response to methotrexate and anti-inflammatory medications such as NSAIDS.

Now, three months later, I have not experienced much relief from the pain and swelling in my hands.  The last blood test indicated an inflammatory marker.  I visited my doctor this week, and she increased the methotrexate dosage slightly.  She stated that the issues I am having are arthritic-like conditions caused by the Sjogren’s syndrome.

I feel sad that I cannot wear my wedding ring.  I am considering buying a nice gold chain and wearing my ring around my neck.  I have not talked to my wife about this idea yet.  She hates gold chains on men!  Echoes of the disco era, I guess.  I, on the other hand, could live in that time again!

I have a fear that my hands will get worse and I won’t be able to do my little projects or keep up with the yard work.  I would love to get into lifting light weights, but my hands hurt more when I do.  I was putting up the dishes from the dishwasher a couple of weeks ago early in the morning.  My hands were stiff, and I managed to drop three dishes.  I have to be extra careful about grasping things carefully so I don’t drop them.

I find at least once a week I wake up at night and often can’t get back to sleep.  Insomnia can be a side effect of this disease, but in my case, I think it is just the worry about becoming more disabled as it progresses.  I have the fear it will eventually be my demise.

Good news doesn’t seem to fit with this entry in my blog, but there are some bright spots.  I am tolerating the new medications well.  I have a faith that sustains me.  I am able to continue with my little projects, and I don’t feel that I’ve lost much strength in my hands.  I have a supportive and quite available rheumatologist who seems very knowledgeable about this disease.  My wife and I have a great relationship.  And I am enjoying my retirement years tremendously!

-- Pete

Tuesday, January 29, 2013

Christmas - A Time for Love


I go all out for the Christmas season, starting just after Thanksgiving when I spend a half-day setting up my outdoor lights.  When I refurbished the garage ten years ago, I added an extra electrical circuit just for my lights.  In years past, I installed over twenty strings all across the front of my home: icicles hanging from the gutters, various colors chasing around the bushes, big old incandescent bulbs lining the sidewalk and gardens.  One year, I even added lights to the patio in the back.

My wife tried to get me to tone down the display so it was not so gaudy.  I tried to please her as the years passed, but I always seemed to overdo it.  This year, I found the job to be more tiring than I expected, so I stopped short of the Coney Island look.  However, I must admit we both are quite satisfied with the results:

The chore of retrieving boxes of Christmas tree ornaments stashed over the garage, and the tree itself, is a feat worthy of Atlas.  Now mind you, I grew up on a Christmas tree farm.  My father and I planted about twenty acres on the curved hill behind our house in the foothills of the Allegheny Mountains.  In spring, we planted little seedlings of pine and spruce; in summer, we pruned them into shape; starting in November, we harvested them.  I fondly recall the hard work of dragging the cut trees off the hill into our yard to be sold wholesale to dealers, peddled individually off our lawn to the locals, or given to local orphanages.  It was hard work for a teenager, but the cold winter air and exercise felt invigorating.

Dad often hired my friends to help.  We climbed the hill, grabbed two or three trees at a time, and pulled them with all our might down the slopes, over and over again!  By the end of the day, exhausted, we collapsed around our kitchen table for mom's hot chocolate and marshmallows.  How delicious those times were!  Of course, we had the best tree in town right in our living room!

About twenty years ago, when my stepdaughter was about twelve, I decided to introduce her and my second wife to the joys of finding and cutting our own Christmas tree.  We traveled out of the city to a farm just off the interstate, parked the car, and slogged through the fields to find the perfect tree.  I was the “expert”, and we found a pretty good one.  By the time we got back to the car, we were cold, wet, and tired, and our boots were caked in an inch of muddy clay up to our shins.  Tree hunting in Texas is not the same as up north! 

I reveled in the fun and excitement, but the girls were not so enthused.  After that year, we got our tree from a local dealer in a parking lot.  Soon after, we discovered that the garden center would deliver and set up a tree. I never again had to tie the tree to the roof of my car, hassle it into the garage to re-cut the base of the trunk, try to fit it into the stand, drag it into the house knocking over furniture and knick-knacks as I went, and set the thing upright trying to get it vertical.  What a revelation!

Unfortunately, our daughter developed allergies in her teen years and, much to my consternation, she started sneezing and coughing as soon as the Christmas tree made its debut.  I guess it was catching, because my wife began having the same reaction.  It was a difficult decision for me to switch to an artificial tree, but now I am a believer.  I embraced the minimal hassle of setting up a three-section, pre-lighted, always vertical tree-in-a-box!


I enjoy the wonder and excitement of decorating the tree, setting out the stockings, buying and wrapping presents, and mailing cards.  But the most wonder-filled feeling comes with sharing time with my family.  Christmas brings warm feelings of connection and love.  It renews my faith, draws me closer to those I hold dear, and prepares me for the next great adventure of the season: making new year’s resolutions…

May this season bring you and your loved ones serenity, balance, connection, light, and the warmth of love!

--Pete

Neurologist Visit


Last week my neurologist, at the last minute, cancelled my appointment because of an emergency.  I was not upset because I missed it on my calendar, anyway.  So, I was surprised when he called me yesterday and asked me to come in that afternoon for our six-month conference.  The result was more testing.

My neurologist and rheumatologist are collaborating on my case.  He asked me all the pertinent questions, and I forgot to tell him about an ongoing pain in my neck.  I’ll call his number today to alert him.  Anyway, he ordered several tests to determine if any additional pathology has developed because of my Sjogren’s syndrome: 
  • Body x-rays to check for lymphoma - Sjogren’s sufferers have a 40 times greater incidence of this disease, which he did not know.  Fortunately, I have no symptoms.
  • Blood work and urinalysis to check for inflammation markers
  • Electromyogram (EMG) to determine nerve response in my arms and legs.  I had this test two years ago, but they only measured responses on my right side.  My symptoms are on both sides: neuropathy and tingling in the hands and feet.

That being said, I feel quite well.  The numbness and tingling in my toes and fingers seems to have greatly decreased in the past two months.  My energy level is high and I keep physically active.  My main complaint is neck and right shoulder pain.  An MRI two years ago revealed mild degeneration in my neck bones.  I attribute the pain to 42 years of working at a computer!

The literature says that Sjogren’s is not a fatal disease, but my neurologist told me that he thought periodic testing was a good idea.  During his career, he recounted, he saw a woman on her deathbed, her team of doctors puzzling over the cause.  He immediately diagnosed it as Sjogren’s syndrome that progressed to attack her organs.  I asked, “Which organs where attacked?”  And he responded, “Yes.”  Fortunately, she was treated and survived, and she was able to assume her life, albeit much limited, after two years.  This story scared me, so I am very ready to do whatever tests he and my rheumatologist recommend!  Bottom line: keep track of new developments in your body and discuss them with your doctor.

In the meantime, I am experimenting with different eye drops and keeping a chart.  The drops recommended by my rheumatologist aggravated my eyes, as did two other concoctions.  There are many formulations of different eye medications, and I think the choice is highly personal and dependent on a person’s reactions.  My advice: if you are having problems in this area: try different drops!

-- Pete

Tuesday, December 4, 2012

The Hits Keep On A-coming

I just received the latest newsletter from the Sjogren's Syndrome Foundation.  Most of the newsletter was devoted to the latest grants for ongoing research projects, which I enjoyed reading - I like the process of learning. Then my day blackened as I pored over a one-page listing of issues related to Rheumatoid Arthritis (RA) and Sjogren's syndrome (SS). The item that seared my mind like a branding iron was:

"... SS can have serious complications: the risk of developing lymphoma is increased 40-fold in SS patients."

40-fold! Yikes! My hypochondria kicks in big time with this type of information. As panic set in, I figured I better get some sound data about symptoms.  I found great information at another website, some of which is summarized in the following paragraphs.

Warning Signs of Lymphoma


The warning signs of lymphoma are so subtle that it may take some time before you realize that there is anything seriously wrong. Here is a list of the common symptoms of lymphoma. Most of these symptoms can also indicate harmless conditions, so if you experience one or more, don't be alarmed! Consult your doctor for an accurate diagnosis.
  1. Painless lumps in your neck, armpits or groin: This is the most common symptom and often the only one. These are enlarged lymph nodes. Most people first notice these lumps while bathing or changing, or your partner may be the first to feel them. Enlarged nodes are not always a sign of lymphoma.
  2. Weight loss: Weight loss usually occurs rapidly for no known reason. Often an individual can lose ten to fifteen pounds over a couple of months.
  3. Fever: Fever that is continuous or occurs intermittently over a period of time and doesn't seem related to a chest or urinary infection is a good sign that you should consult a doctor. Fever related to node swellings occurs commonly with infections, and many lymphomas are often mistaken for infections at the early stage. Occasionally, in those affected by Hodgkin lymphoma, a characteristic fever called Pel-Ebstein fever occurs.
  4. Excessive sweating at night: This unique situation may be quite bothersome. You may wake up at night drenched in sweat without any apparent reason.
  5. Itchiness all over your body: Another unique situation, full-body itching, is related to the secretion of some special chemicals from the lymphoma cells.
  6. Loss of appetite: As lymphomas spread within your body and grow in size, many individuals feel a considerable loss in their appetite, further accelerating weight loss. Weight loss of more than 10% is one of the B-symptoms of lymphoma.
  7. A feeling of weakness: As cancer cells are always growing, they use up more of the body's nutrients, leaving the body with less. This makes you feel weaker.
  8. Breathlessness along with swelling of the face and neck: Rarely, when a lymphoma in the neck or chest grows very large, it may block the flow of some vessels and lead to a swelling of the face and neck along with a feeling of breathlessness.

As lymphomas can occur in any organ, may give rise to some unusual symptoms as well. A lymphoma in the stomach can cause pain in the abdomen, and a lymphoma in the brain can cause headaches or leg weakness. If you experience several of these symptoms or feel at all concerned that you might have lymphoma, see your doctor. Only a medical professional can properly diagnose the cause of your symptoms.

Stages of Lymphoma

The bigger your disease and the more it has spread, the worse the outcome will be. Staging is a system of categorizing an individual's disease into one of four groups or "stages," which give a general idea of how far the disease has spread and how to treat it. First, a series of tests are conducted to determine which parts of your body are affected by lymphoma. Then, the diagnosis is made.
  • Stage I: The disease is present in only one group of lymph nodes, or, more rarely, in a single organ that does not belong to the lymph system.
  • Stage II: Cancer is found in two or more groups of lymph nodes on the same side as the diaphragm. (The diaphragm is a thin muscle below the lungs that helps in breathing and separates your chest from the abdomen). In addition, an organ not in the lymph system may be involved close to the involved nodes.
  • Stage III: The disease is present in lymph node groups on both sides of the diaphragm, occasionally with the involvement of other adjacent organs. If the spleen is involved then the disease becomes stage III as well.
  • Stage IV: Once the liver, the bone marrow or the lung substance becomes involved, the disease is in stage IV. The same is true if other organs are involved far away from involved nodes.

What do the Letters A and B Stand For?

You will often find some additional alphabets used with the stage to describe the lymphoma. The most important ones are A and B. Often, patients may complain of fever, weight-loss, or excessive night sweats. If any of these symptoms (called 'B' symptoms) are present, a 'B' is added to their stage description. If none of these symptoms exist, an 'A' is added. Those with B-symptoms may have worse results than those who do not.

What Are E and S?

If any organ that does not belong to the lymph system is involved, it is denoted with an 'E' after the stage. 'E' denotes extralymphatic organ involvement. If the spleen is involved, the corresponding letter is 'S'.

Does Advanced-Stage Disease Always Have a Poor Outcome?

The disease stage is an important parameter for success or failure, but many patients with advanced stage lymphoma are cured. A number of sub-types of lymphoma have good results with treatment even in advanced stage disease. Often, other factors like your age or the size of your disease are equally important for prognosis. Your doctor is the person best suited to guide you regarding your chances of success or failure.

Cloudy Future? Or Bright Present?

During most of my life, I lived for future events. As I passed through high school, my goal was always a good college education. I earned a Bachelor's Degree and, near the end of those four years, I set a goal to get a Master's. Then I focused on getting a good job in engineering. And so on. 

A therapist once told me that I lived in the future because I was running from my past, my childhood. A good part of that childhood was spent recovering from a serious illness. Hence, my hypochondriacal nature that roars whenever I feel the least little symptom of illness or discomfort. 

I have gone through about two months grieving my diagnosis, but it has not slowed me down much. I accepted that I have to take the medication, put drops in my eye, use Biotene mouthwash and occasionally take a nap. Now, I will accept that I can be vigilant for, but not controlled by, potential symptoms. I also realize that I must rededicate myself to better health:  daily exercise, healthy eating, eliminating sugar and other poisons from my diet, meditation/prayer, and living in the present moment. Who has not heard this advice before?

-- Pete







Tuesday, November 13, 2012

Worry a LIttle

I just received the latest edition (October 2012) of the newsletter, appropriately called The Moisture Seekers, from Sjogren's Syndrome Foundation. It includes an explanation of potential complications from Sjogren's and associated symptoms. During most of my life, I have been mildly hypochondriacal, so the article caused me to worry a little about my future with this disease.  A summary follows.

Potential Medical Issues


  • Virtually all patients have sicca (dryness) symptoms, including dry eyes, dry mouth, and sometimes dry skin, dry cough, and, for women, vaginal dryness
  • Patients can develop non-sicca symptoms and disorders that involve the respiratory tract, kidneys, skin, or neurological system.
  • Kidney inflammation can occur (glomerulonephritis). Refer to website:  http://www.medicalnewstoday.com/articles/167252.php
  • Severe neuropathy and, rarely, central nervous system involvement can occur.
  • Lymphoma incidence is rare but significantly higher than the general population.
  • Key symptoms of Sjogren's that can impair lifestyle include fatigue, joint pain, and dryness mentioned above.  Sjogren's is often linked with fatigue, depression, and pain.
  • The most common type of neuropathy affects small sensory nerve fibers, causing a burning sensation.  My neuropathy feels like a "pins and needles" feeling in my toes and fingers, as if they had "gone to sleep".
  • Research into Central Nervous Sjoegren's Syndrome is in its infancy.  The most common sympoms include poor attention and concentration, memory deficits, and slowed processing speed.  Less common effects include impairment in abstract reasoning, response-inhibition, set-shifting abilities, general intellectual functioning, and visuospatial skills.  The issues range from mild to severe.  
  • A recent study reported 72.8% of Sjogren's patients exhibited neuropsychological impairment.  Treatment can help.  This issue is what really scared me.

Other Worries

Patients often report symptoms of anxiety and depression.  I will admit to being more aware of these feelings over the past six months.  For the most part, I have been an optimistic, energetic person throughout my life, and this change bothers me.  I found myself being more negative, which is not the way I want to live.  In addition to working with a therapist, I am simplifying, reducing the many projects, meetings, and organizations I am involved in, and focusing on having more fun in my retirement years.

The good news is that Sjogren's has NOT been associated with progression toward Alzheimer's disease or dementia.


Alcohol Usage


In general, small amounts of alcohol usage are OK for patients.  The effects of alcohol usage should be monitored closely because they can be exacerbated.  Abstinence is recommended by some experts because of alcohol's drying effect on the body.

A Resource


I urge those of you who suffer with this syndrome to register via the foundation's website:

You can receive The Moisture Seekers monthly in your mailbox from this foundation.

--Pete




Tuesday, November 6, 2012

Rid of Prednisone!


Hoo-eee!  No more Prednisone!  I finished the last tablet in my six-week regimen yesterday.  It will probably take a little bit for the jittery and nervous feelings to dissipate as the drug works its way out of my system.  I noticed that although I did not suffer from "fat-face" syndrome, my stomach has bloated up some, making my pants a bit snug.  Well, back to Weightwatchers full force this week!

I am happy to report that I am tolerating Plaquenil well, except for some constipation.  I have not noticed any big changes in my symptoms, but I am hopeful I will feel better and better over the coming weeks as the holidays approach.  In addition, I wanted to report that my symptoms from taking amlotidine for hypertension seem to have decreased, namely dizziness and disorientation.

Overall, during the past six weeks, I felt depressed, overloaded, tired, and tense, but these feelings seem to be ameliorating.  I am getting a lot of exercise doing fall clean up around the yard, resting pretty well at night, and working on simplifying my life.  I made a list of activities, meetings, and to-do's that were stressing me out and not leaving time for myself.  The list was thirty items long!  Now I am eliminating, postponing, unsubscribing, and just saying "no" to most of those.  It feels scary, but I feel more relaxed and present.  I'm down to seven or eight activities on the list that need to be addressed.

I intend to check in with my doctor today.  I will let you know how that goes.


-- Pete

Thursday, November 1, 2012

5 Minutes of Normal

Last night, about 2AM, I awoke to a new feeling... almost normal! I was relaxed, but more importantly my fingers and toes did not feel the constant tingling sensation I felt over two years. They felt, well, normal. Perhaps a bit on the numb side, but no prickling, no feeling as if a current of electricity was passing through them, no tension, almost... normal!

The "normal" feeling lasted about five minutes as I lay in bed and became aware of my whole body again, the coolness of soft sheets and fluffed pillow, the warm air coming from the furnace register.  My whole body felt much more alive than it has, probably because my focus on my symptoms and constant worry has left me "out of my body", as my therapist says. I also noticed the Prednisone suppressed my mojo considerably, and it's great to feel it slowly coming back!

I am on the phase-down side of the Prednisone dosage. The purpose of the drug is to reduce inflammation and alleviate symptoms until the Plaquenil can take effect, a period of about six weeks. For these last two weeks, the steroid dosage is ten mg per day. I find my jumpiness, nervousness, and jitteriness has already lessened. I did not experience any real relief from my symptoms with the Prednisone.  I think the Plaquenil (generic: hydroxychloriquine) has just started to take effect. I hope and pray for increasing relief because often I wake up with my feet and hands numb and feeling like they are not parts of my body, feeling as if a thousand tiny needles are poking them.

Slowly the euphoric feeling faded, but I must admit that today I am energetic, hopeful, and much less depressed.  As a side note, I periodically experienced cramping just behind and below my breastbone.  The pain sometimes radiated up into my neck, back, and shoulders.  Naturally, I was very concerned, but an EKG this week and a checkup by a cardiologist indicated my symptoms are probably not heart-related.  I plan on taking a stress test at the end of the month just to make sure. I also had an abdominal sonogram, but the results are not in yet.

Because my blood pressure notched up significantly in August, my PCP (primary care physician) prescribed five mg of amlotidine, a calcium blocker. I want to get back into our city's recreation center and take advantage of their indoor track and exercise equipment, lose another 12 pounds, and revive my stamina.  I did this for a while with my wife, but we were not consistent enough to make the cost worthwhile.  Now I am much more serious as I see age 70 approaching! Anyway, the extra heart medication made me feel quite tired, a bit disoriented, and sometimes a bit dizzy.  Those symptoms are supposed to disappear over a period of four to six weeks on this drug.  That may explain why I have been dragging around more than usual, exacerbated by my mild depression about all this.

Finally, on approval of my doctor, I upped the Plaquinil to the recommended dosage of two pills a day (200mg x 2).  I cut back four weeks ago because of abdominal cramping, but this week I seem to be tolerating the higher amount well.  Good news!

In short, I do not handle illness well.  I am a "doer" and I don't like being tired, run down, or sick.  These issues take me back to my childhood when I was sick and almost died with rheumatic fever and pneumonia. These past four weeks, my old trauma and body memories triggered me into not-so-subtle depression, ennui, and terror.  Now that I feel a bit better as I get used to the new medications, my mood is rising.  Today is the first day I felt "better" in over a month, and it is very welcome!

My next entry will be about my trip to Buffalo last weekend to see family and to visit the hospital I was in as a child when I was so close to death's door.  Stay tuned!

-- Pete


Monday, October 22, 2012

Energy / No Energy

This past week, I experienced more energy.  Thank goodness, because I have delayed painting the hallway in my home for two months, and it was really getting on my nerves.  Of course, I have to say I was quite occupied because of a vacation, a consulting gig, and, the week before last, lot's of little errands and some fatigue.  But I did complete the project: masked the carpet, finished sanding the base and crown molding, painted the molding, masked the molding, painted the walls, touched up, and pulled up the carpet protector.  It looks great!  But this week, I feel exhausted.

One of the effects of Sjogren's syndrome can be exhaustion.  It can feel like Chronic Fatigue Syndrome.  I haven't experienced the oppressive, can't-get-out-of-bed fatigue that some do, but I slept or sat around most of yesterday.  This is unusual for me, because I am usually a high-energy person.  I love to "do, do, do".  Maybe my lesson in this illness is to learn to slow down and "be, be, be".  It's a good lesson to learn!

The Prednisone I am taking kicked my butt over the weekend.  I felt more jittery, spastic, and jumpy than ever, and yet I was tired all weekend.  At times, my skin itched and I just wanted to jump out of it.  This anti-inflammatory drug has a host of side effects that can seem to drive a person crazy.  I think I have controlled the "crazies" pretty well, although my nervousness and sleepless nights are wearing on me.  

About every other night, I wake up about 2 or 3 in the morning and can't get back to sleep.  I now put the time to use by getting up, eating a snack, checking my email and the news, and maybe journaling or reading.  Then I find myself on the sofa in the family room for a couple more hours of sleep before my wife comes out for morning coffee.

Today is a 4-week check in point with my rheumatologist.  The main thing I want to discuss with her is trying to go back up to two pills a day on the Plaquinil.  I had to cut down to one 200mg dose a day because of one of its side effects: stomach cramps.  However, it is the key drug for me to inhibit the auto-immune response.

I hate side effects!

-- Pete

Friday, October 12, 2012

What is Sjogren's Syndrome?





Introduction


My name is Pete, and I live in the U.S.  This blog is about my experience with Sjogren's syndrome as a male in North America.  Sjogren's Syndrome is an autoimmune disease of the body.  Its primary manifestations are dry eyes and dry mouth.  However, it can have many other deleterious effects on the organs of the body.  It is not a terminal disease, but it can be debilitating if left untreated.

Unfortunately, it typically takes a long time to diagnose Sjogren's, averaging 6 to 7 years after onset of symptoms.  I was fortunate.  I was diagnosed about 3 years after initial symptoms.  Other autoimmune diseases can accompany Sjogren's, but, other than MS, I have not been fully tested for those.

Sjogren's is not as severe or as prevalent as the better-known autoimmune diseases, such as MS, Lupus, rheumatoid arthritis, and fibromyalgia.  It affects about 4,000,000 people in America, of which only about 10%, or 400,000, are male.  I guess I am unique, although I would gladly forego that "specialness" in this case.

 Onset

The past few years, my dentist commented at every visit how dry my mouth was.  My awareness was blunted, probably because I was always sucking on coffee or Coke or Pepsi or beer.  Alternatively, I was chewing gum or putting some sort of foodstuff into my mouth.  However, about three years ago I noted that my hands were tingling.  Initially, I attributed this to carpal tunnel syndrome, but I worried that it might be more serious.  My primary care physician, an older, well-experienced man and a professor stated, "I have no clue, but let's refer you to a neurologist”.  

Diagnosis

Over the course of a year plus, I was stuck, inspected, MRIed, blinked at by electronic test instruments, and jolted with what seemed like cattle prods.  I passed every test with flying colors except one: the Antinuclear Antibody (ANA) blood test.  The ANA test helps screen for autoimmune disorders, and mine came back positive.  

My neurologist also ordered a brain MRI, which revealed four spots that could indicate lesions in the brain, a precursor of, among other diseases, MS.  A year later, we did another MRI, and no change had manifested in my highly intelligent brain matter.  I went through a series of eye tests that can indicate MS.  Keep in mind that MS usually is diagnosed as a result of eliminating other diseases.  My MS doctor told me I was atypical for an MS diagnosis.  Whew!  However, I experienced more tingling and some numbness in my toes and occasionally in my hands.

The last stop was the Rheumatology Clinic.  There, a brilliant young doctor poked me with a sharp needle, asked a bunch of questions, and ordered a biopsy of my saliva glands.  The saliva gland biopsy is an accurate diagnostic technique for Sjogren's syndrome.  The procedure was easy (I went into a meditative state, and the doctor was very entertaining).  However, my mouth and jaw hurt for a week, I had a headache (which I treated with Tylenol), and I woke up often in the middle of the night with anxiety attacks.  

I kept searching for the test results on the hospital's electronic web system, but I did not find them.  When I got "the call", I knew it was Sjogren's, and my anxiety doubled.  The young female doctor, sans makeup, prodded by toes, feet, and hands again and told me about the positive results of the biopsy.  I got suddenly depressed.  Surprise!

Reaction

So, this is how it goes.  The main symptoms of Sjogren's are dry eyes and dry mouth.  My eyes immediately felt dry.  My mouth immediately needed more lubrication.  However, the downside was my increasing neuropathy in my feet and hands.  Suddenly, my toes felt cold all the time.  I turned to wearing socks in bed at night, something that I did only during cold winters.  All these awarenesses crammed in at the same time.  Isn't it amazing how our minds block then focus on issues in our bodies, and how our bodies respond to those messages?

My doctor told me that sometimes Sjogren’s causes the body to attack nerves in the extremities.  It can also cause damage to the capillaries over time because of its effect on the nerves leading to them.

That wonderful doctor immediately prescribed three dreadful medications:
·       Plaquinel, an anti-malarial medication shown to be effective against auto-immune diseases
·       Pilocarpine, a drug that counteracts dry mouth syndrome
·       And, of course, the all-purpose anti-inflammation hated drug, Prednisone, a steroid.


Prednisone causes jitteriness, nervous tension, hyperactivity, unexplained hunger, fat-face syndrome, insomnia, ADD, weight gain, a desire to organize drawers in every corner of the house, and other crazy-making feelings.  I saw this in my daughter who had a course of the drug when she was diagnosed with colitis at age 16.  Wow!  That was something to see!  The girl basically went hyper for three months!

My primary insanity on this drug currently manifests as waking at 3AM with an overpowering desire for Honey Nut Cheerios, even though I feel full.  Usually, Prednisone people are hungry all the time and put on 20 or 30 pounds during the course of dosages.  I have often felt over-full since starting the regimen.  I will let you know how this goes, but I have "other issues".

The kicker for me was the side effect of the Plaquinel (Read the warnings!  BTW, is there any drug on the market without the warning, "May cause nausea"?).  Therefore, my warning was stomach cramps, which caused my doctor to reduce the dosage by a half.  I am so scared this reduced dosage may not be effective.  Therefore, that scare, plus all the other crap going on in my life, caused a lot of constipation (TMI?) and, of course, stomach cramps.

So I figured at my advanced age, being a "senior" and all, it was time for me to add prune juice to my regimen of prescriptions and OTC concoctions.  As of today, I am still not back to my "usual".  Maybe more prune juice!  I will keep you “posted"!

Depression

I felt inundated by depression the moment I heard the diagnosis.  My wife and I kept talking on the bright side of things, "Thank God it's not MS",  "Or Lupus", or "That damn rheumatoid arthritis that my sister has", or "Something worse".  It doesn't matter.  Whenever one receives a diagnosis, ANY diagnosis, it is hard to look on the bright side of things.  It hits with body blows that bewilder, bedevil, and just plain hurt.  We all think we are immune.  That the worst is reserved for the neighbor down the street.  We deny our mortality.  Nevertheless, even a case of the flu can send us into doubts about our invulnerability, especially as we get older and our immune system starts to flag.  I felt/knew the diagnosis was coming, but it did not help with the sleepless nights leading up to the diagnosis.  

I tell myself, "It's only Sjogren's”.  However, my symptoms of neuropathy in my hands and feet are unusual.  I also occasionally feel crashing exhaustion, another potential consequence of this disease.  Okay!  I tend to drive myself into exhaustion through my constant striving to “achieve” and “please everybody else” and “see approval for who I believe I am”.  And the big one, “I am a high-energy person!”

Dealing with Some Old Pain

I tend to by hypochondriacal.  In addition, I am deathly afraid of dying.  Not so much death, because I have a bedrock spirituality that belies the death of the body, but of the process of moving from life to death.  The pain.  The helplessness.  The fear of the next step down into oblivion while still full of life and awareness.  I have always had that fear, exacerbated by a near-death experience at age six.  I have been working on that trauma for years.  Now, knowing my body is attacking itself, my childhood dread broke out again.  It came out as anger, sadness, fear, and isolation on my part.  I felt like wrapping myself in a cocoon and being quiet, dark, stolid, and unresponsive.  I know that is not what I need in my life.

We, as humans, have a tendency toward the negative.  Rare is the person who always turns lemons into lemonade!  I am no exception.  However, I am always amazed at how the human spirit triumphs and learns to deal with mortality.  So maybe, just maybe, there is something to this concept of soul, spirit, the beyond, the ongoing conscience, the core of being that is the center of who we really are.  

Ah well!  Enough of philosophy and religion and all that ethereal stuff!  In this blog, I will focus on what's happening with my body, my mind, and, occasionally, but not in an overbearing manner, my spirit.  I hope you enjoy the journey with me!

Is “IT so bad?”.  What is the worst?  How can you cope with that?  Can you see beyond this little world to a greater Presence?  Do you FEEL like I do (Frampton)?