Wednesday, September 17, 2014

Sjogren's and Dry Mouth/Dry Eyes: Products That Help

Sjogren's is a common disorder for patients with autoimmune and rheumatic issues, either as a primary condition or secondary to other health conditions--it's characterized by very dry mouth and dry eyes and can affect many organ systems. Stomach issues can result--because the stomach does not produce enough acid to digest your food--as can genitorurinary symptoms, skin problems, etc.

Patients without Sjogren's often likewise experience very dry mouth or eyes as a side effect of a medication or multiple medications--and the result can be uncomfortable, distressing, and even painful. So rheumatology patients are not alone--cancer patients, for example, often experience the same symptoms.

If you're wondering if you have Sjogren's, the Sjogren's Foundation offers information you can look at and discuss with your doctor:

Fortunately, there is help for Sjogren's. A number of suggestions and products are listed below, but feel free to include any you like in the comments--other people can definitely benefit. These suggestions aren't intended as medical advice; please consult your specialists to find out what products will work best for you, will work with other medications that you're taking, etc.

-Biotene mouthwash, mouth lozenges, gum, and artificial saliva (this is a sweet tasting gel, not as gross as it sounds). There are other brands!
-Dental spray. I don't currently use one, but Therapsray worked well for a while. (Now that I'm writing this, I should pick up some--it really helped reduce my cavities and gave great relief.)
-Clinpro-this is a prescription toothpaste with extra fluoride for patients who have experienced many cavities.
-There are other remineralizing toothpastes and other toothpastes with fluoride that dentists recommend--check to see what works best for your situation.
-Numoisyn gel mouthwash (prescription; coats the inside of your mouth)--this is very soothing!
-Numoisyn tablets (prescription; dissolve in your mouth and moisturize it)
-Salagen (prescription; generic is pilocarpine; pills for saliva production; this bothers my heart some--I check meds with my rheumatologist as well!)
-More frequent dental cleanings (3-4x a year)--you actually save money because of fewer cavities.
-Fluoride treatment at each dental cleaning, just like the little kids do! You can also have sealants put on your back teeth again.
It's good to be vigilant with dental health to avoid cavities from lower saliva production as much as you can.
-Gum with xylitol (cavity fighting); keep away from pets--very toxic to them!
-Watch mouthwashes--many have alcohol, which dries the mouth even more. Ask your dentist about products that are alcohol free or moisturizing.

-Restasis (prescription; cyclosporine). This provides the best relief, as it addresses the cause rather than just the effects; however, there are long-term side effects, so it's worth discussing using it periodically.
-Systane and Blink. Systane makes several kinds of drops, each of which work differently; some don't work with contact lenses (so I've been told). I like their Ultra best. Recently Blink works better for me. Not sure if the formulas changed or my eyes changed.
-Contact lenses that work better for dry eyes; sometimes these can help hold in moisture for a while (CibaVision AquaComfort and Proclear)
-Eyeglasses when you have to!
-Don't forget your sunglasses--steroid use can make us more prone to cataracts over time already.
-I'm told eye masks are good for sleeping (like many people with connective tissue issues, I sleep with my eyes partially open).

For me, Sjogren's is in and of itself painful, often in an entirely different way from arthritis. A flare of Sjogren's can follow a stressful event or major pain episode. My eyes will feel dessicated and I will wake up unable to blink or close my eyes. There's no way to describe how dry your mouth feels--it's unlike any amount of dehydration. Then there's subsequent fatigue and joint/muscle pain that feels characteristically different from what I feel with an arthritis flare (especially the fatigue); it really is qualitatively different from my usual arthritis symptoms, with a different kind of rigidity. I'm curious if others feel it's different from arthritis fatigue and pain.

I hope this post is helpful to others in getting symptom relief from flares. Again, feel free to add your own suggestions in comments!

Monday, September 8, 2014

How the Medical System Fails Sick Kids

Notes from my son's illness at this time 3 years ago (see symptom diary from September below). From this, his rheumatologist concluded he had pain amplification and was just imitating me, implied I wanted him to be sick and take medications, and dismissed him from care.

His illness was sudden onset, preceded by a virus.

The medical system fails people. I'll let my notes speak for themselves. Five months between appointments with no treatment is also inadequate.

Rheumatology Appointment: 10/4/11

Goals for appointment:  continue moving toward diagnosis; set treatment goals since his issues are now chronic; notes needed for IEP at school

Symptom updates:
He did not improve a lot over the summer, though he was able to get more rest and could thus do better on a daily basis than he does now during the school year. 

Sleep specialist said it’s taking him a long time to go to sleep but once he does his sleep quality is really good—no obstructive sleep apnea, no disruptions of his sleep.  He said there is one blood test to run if you run other bloodwork (Note: I don't remember what this was, but rheum did not run any more bloodwork).  He believes he probably does have a rheumatologic issue, and that’s what’s creating his need for more sleep.  Says his brain waves/sleep patterns are not characteristic of someone with fibromyalgia.

Psoriasis on inside of elbows (has widened out), heel pain, back pain periodically.  Other joint pain periodically. Extreme fatigue all the time.

Frequently asking for ice packs and heat packs for pain

We always get him up and dressed and ready for school whether or not he can go; he is ready well before school starts, though sometimes he goes back to sleep in his chair while waiting to leave or in the car on the way.  He is sleeping 10-12 hours a night, every night.

Excessive absences due to extreme fatigue à strongly considering homeschooling because his instructional time is so fragmented.

Could not go to pool party/swim park with school friends at end of school year.  He did not have enough energy to do a birthday party this year, though he really wanted to and I would have done anything he wanted for it.  Cannot go on fun outings like arboreteum, outdoor festivals, museums, zoos, shopping, bookstores—everything our family likes to do.

Could not do Scouts in evenings this summer despite not having school because of pain. He loves Scouts.

Continues having the back pain he’s had since 2008 and before, despite shoe inserts now recommended by pediatrician/podiatrist.

Swam at grandparents’ this summer and did some exercises at home; right now, he can barely make it through school day and homework and misses 1-2 days per week.  He is doing makeup work at home and his teachers say he is a dedicated, hardworking, sweet student.

Struggling with PE some days from joint pain, muscle pain, and fatigue.  Difficulty sitting on floor there every day.

Crying on one day from pain this summer.
Autism and the fatigue/pain are like the perfect storm in the mornings and he has difficulty getting into the school building sometimes.  ADD evaluation in September by school shows him to be very low on energy (rates 1 on almost everything, not fidgety at all, good concentration when he’s there)

Symptom diary for 2011-2012 school year:
Most days—has difficulty with pain that interferes with violin practice (wrist, back, or fatigue).  He will practice a few minutes, then stop for 2-3 minutes; extraordinarily difficult for him.  A few times he’s been able to practice an hour a day. He likes to play violin—was one of the top 2 students in his grade last year, received award for practice time.
8/18 – wrist pain severe enough to make him cry
8/22-severe hip pain in morning, limping from it (pointing to hip socket, not rear or SI joints)
8/24 –leg and foot pain—needs ice pack
8/27-crying from pain and fatigue at Abilities Expo, though just sitting in a camping chair; slept on 5 hour drive back that night
8/28-sleep study; missed school
9/5 – Labor Day—slept 12 hrs; we woke him so he could be able to go to bed that night, but he would have easily slept another 2 hours.  Very sluggish, half asleep on brief errands, eyes half-lidded.  Could not go to grandparents’ for family birthday party/swimming.
9/6-leg pain at night, refusing shower because of pain and fatigue—took bath instead
9/7-extremely fatigued that morning, tried to get back into car 3x—his dad and assistant principal had to help him into school, get into locker
9/8-better with school, severe leg pain
9/9-crying before school, refused to get out of car—I had to talk him into going into school on phone;
Kept saying “I need energy”
9/10-ate out; quick trip to Petsmart and to get sandwich food from Target—begging to home while at Target even though it was a very fast trip
9/11, 9/12-severe shoulder pain, can’t practice on violin
9/12-psoriasis patch of several inches on inside of one elbow
9/14-leg pain, heating pad
9/15-leg pain, heating pad; protests shower because of leg pain
9/16-comes back home after 2nd period, says fatigue is like he’s wearing lead weights; missed school the rest of the day
Weekend of 9/16—could not get him to go anywhere with us on the weekend until we made him get out with us for an hour to Petco/Party City/bookstore—he complained of fatigue, begged to go home until we did
9/19 – 9/20—better with energy, mornings more smooth
9/20 evening-difficulty showering because of physical fatigue / difficulty sleeping despite Tylenol
9/21 – difficulty waking, has to miss school; heel pain
Psoriasis on inside of 2 elbows; pain in foot.  Having difficulty sitting on ground in health/PE class from pain—has to use a chair
9/24, 9/26 and 9/27-missed school from fatigue; had respiratory infection the last 2 days but extraordinary fatigue with it; asking for hot packs for legs this week
9/26-left wrist pain
10/1 Back pain, could not do violin. 
10/2—More back pain.  I asked him where it was—thoracic, right in middle of vertebrae, not to sides of it.  Crying about having to eat dinner at grandparents’ house because of fatigue
10/3-mild sore throat, fatigue
10/5-sore throat, fatigue. Felt like going to fair; within 30 minutes, he was wishing we brought the manual wheelchair for him.  Complaining of heel pain within 10 minutes, back pain soon after.  We could only go to shows/look in a very limited area because of his back pain and fatigue.  Evening—crying from having to shower

Behavioral results from sleep issues/illness:
9/12-asked pediatrician about Ritalin to at least help him with concentration; she wants an ADD eval first (more appointments we can’t afford, expensive), despite ADD eval from school.  Symptoms since 1st grade, PDD/autism, but now more difficult to manage.  Brain fog?? (notes below)
Problems answering questions; “I don’t know” to everyone (regression to earlier autism behaviors)
Gets distracted mid-sentence when we’re asking him something from fatigue or inattention in mornings or after school; I will have to repeat question many times—can’t focus on what we’re saying.  Much better on weekends.
Have to repeat requests of him many times to get him to do something (forgetfulness, not willfulness; honest problems with short term memory)
Gets distracted mid-long-division or writing assignment

An A student who did homework easily on his own last year; still making As but struggling because of fatigue