Wednesday, October 30, 2019

The Moisture Seekers Newsletter: CBD Oil and Sjogren's

image found on Wikipedia here

Members of the Sjogren's Syndrome Foundation (you can become a member and browse their excellent site here) receive a newsletter packed full of valuable information. Volume 37, Issue 09 October 2019 is no exception. Among other interesting topics, the Q & A ASK THE EXPERTS section contained this timely question:
The use of CBD oil has been in the news a lot and I've heard it mentioned to help treat Sjogren's. What is CBD oil, how can it be used to treat Sjogren's patients and has this treatment been approved to be safe? 
I thought this was a good question. These days CBD oil has been touted as a cure for any and all ailments. Our grocery store sells it in a prominently displayed kiosk.

Hi Honey. Heading to the grocery store. Need anything? Milk? Eggs? CBD?

Here's excerpts from the in depth answer written by Donald E. Thomas, Jr., MD, FACP, FACR, RhMSUS, CCD.:

With our current opioid crisis along with the increasing approval of the use of medical cannabis in the United States, this is a timely and appropriate question. Cannabis (also known as marijuana) is the most commonly used illegal drug worldwide (at least illegal in most areas). The compound called delta 9-tetrahydrocannabinol (THC) is responsible for its effects that make people feel "high". Another compound in cannabis is cannabidiol, known as CBD for short. CBD does not have the "high" exerting effects of THC but is thought to have medicinal effects partly due to its attachment to cannabinoid receptors. These receptors are located on the surfaces of cells throughout the body to include the brain, nerves, and cells of the immune system. Therefore, it is not surprising that CBD may potentially have beneficial health properties. ..............

...........I have had patients with chronic pain use CBD oil and purportedly report good results, especially for nerve pain (which is common in Sjogren's). However, I am unable to formally recommend it to my patients for several reasons. One big reason is that recently there have been reports of high levels of pesticides and heavy metals (such as arsenic and lead) in many CBD products along with inaccurate amounts of the stated amounts of CBD. This represents on of the biggest problems. Since the federal government makes CBD use illegal, there is no quality regulations imposed on their production and distribution. One of the most important things is that I cannot recommend any treatment unless it has been proven safe plus effective. We just do not have the research to prove either one.

Bottom line: I do believe that it may have potential health benefits. However, until we have more studies to prove effectiveness that outweighs side effects, studies to know its potential interactions with other medications, and that we have regulatory controls to ensure high quality products (devoid of harmful contaminants), I cannot recommend it.
                                                          Donald E. Thomas, Jr., MD, FACP, FACR, RhMSUS, CCD

I have included only a few paragraphs from this article, but be sure to head over to the Sjogren's Syndrome Foundation to read it in its entirety.

I guess I won't be adding CBD oil to my grocery shopping list any time soon.

Sunday, October 20, 2019

Plastic is my problem.

It  certainly makes sense: when one's saliva isn't normal, and one's mouth is dry, that one's sense of taste will be altered. Mine included.

So I've noticed this in a whole variety of foods, but usually the changes that I've noticed are a decrease in the intensity of flavors. Occasionally when I'm unusually tired, my sense of the taste of bitterness is exaggerated.

How weird is that?

My newest taste strangeness involves food in plastic bags. Especially baked goods. I went through a phase during which I bought multiple loaves of bread, all of which were packaged in the standard plastic bag. It was an expensive phase since every single one ended up in the trash. I'd sample a slice but all of them tasted bad to me. A hard to describe bad. Mostly, they tasted somewhere between moldy and rotted.

Not enjoyable. It got so bad that I would gag whenever I opened the bag.

I couldn't imagine that the bags were the problem. I'd been eating food from plastic bags for all of my life. Then one day, I purchased bread from a bakery which was packaged in a plain brown paper bag. I tentatively took a bite and was instantly in a state of BLISS.

Yes. My problem HAS been with poly bags. Bakery bread has been my BFF ever since. When I discovered grocery store bread packaged with an inner wrapping of cellophane, my suspicions were confirmed. It tasted great; exactly how I remembered bread tasting before my taste buds went wacko.

I found cellophane food grade bags online for those times when I feel the need and have the energy to bake my own bread. Yum. Here's my latest loaf, recipe from Bob's Red Mill:


Honey Whole Wheat Bread 

Ingredients

By Hand

1 cup Warm Water 110°F
2 1/4 tsp Active Dry Yeast (one 7g packet)
1 cup Milk room temperature
1/4 cup Honey
2 Tbsp Oil
2 3/4 cups Unbleached White All-Purpose Flour
2 3/4 cups Whole Wheat Flour or Organic Whole Wheat Flour
1 Tbsp Salt

Instructions

By Hand

1. Pour water into a large bowl or the bowl of a stand mixer and sprinkle yeast over top. Let sit until yeast dissolves, about 5 minutes. Stir in milk, honey and oil. Add flours and stir by hand or with a dough hook until a dough forms, about 1 minute on low.

2. Add the salt and knead dough until it is smooth and springy, about 10 minutes on medium speed.
Form dough into a ball and place in a large bowl lightly coated with oil. Turn dough to coat with oil. Cover and let rise until doubled in size, about 1 hour.

3. Transfer dough to floured surface. Divide dough in half and form into two balls. Preheat the oven to 425°F. Grease two 9 x 5-inch loaf pans. Gently press and shape each ball into a 9 x 9-inch square. Fold into thirds, like folding a letter. Pinch the seam closed and place loaf seam-side down in prepared pan. Cover and let rise for 40-60 minutes.

4. Make three angled slashes on top of each loaf with a knife and place in oven. Immediately reduce heat to 375°F and bake until loaves are golden-brown and sound hollow when tapped, about 30 minutes. Remove from pans and let cool completely on wire rack.
------------------------------

So, y'all don't think that I actually followed this recipe to the letter, did you?

You did? Silly people. Here's the changes that I made to the recipe:

I kneaded a bunch of sunflower seeds (maybe 1/2 cup) into the dough and just couldn't bring myself to use one whole tablespoon of salt. So I used 1 and 1/2 tsp. And instead of making two smaller loaves, stuck the whole batch of dough into my biggest bread pan. As far as waiting until this gorgeous fragrant loaf was cool enough to take a knife to it?  Pfffft.

This is indescribably good; especially since I've been on a burst and taper dose of prednisone which causes "put my face into a chocolate cake" carb cravings. Luckily, a slice of this bread quashes my cravings just fine.

Anyone else have an aversion to poly bags? Or other changes to the sense of taste? Share in the comments section below.

You can read more about diminished taste in Sjogren's syndrome here.

Friday, October 18, 2019

Lessons Learned

It's been 16 years since my diagnosis.

Wow.

Seems like it happened yesterday, but at the same time, I feel as though it's been a major part of  my whole life as well. Y'all know what I mean. I feel as though I have no surprises left for me in this old autoimmune disease riddled body, and yet......I feel strangely as though I understand absolutely nothing about Sjogren's syndrome.

On days that I feel optimistic, when this paradox occurs to me, I simply throw up my hands and laugh. And think something along the lines of  Ah well, it is stuff like this that keeps life interesting.

Then on days like today when I'm struggling with chronic decade-long issues, I throw up my hands and think something far less cheery. You can insert your own feelings here since I know that y'all deal with the same things.

It is on days like today that I can appreciate the value of those sixteen years behind me in managing this illness. Today, my energy is low, my joints are painful, and I'm teetering on the edge of a POOR ME episode. Disgusting.

But based on my experiences over the last sixteen years, today I am able to step back from the abyss of self pity because I have been here before. Which is both unfortunate as well as a good thing. I've had more days like today than I care to count, but I have also had innumerable episodes during which I have realized that these experiences don't last forever. That I can come out on the other side of gloom, doom, and discomfort and survive. To not only survive, but to thrive in my own way.

One doesn't come by those types of realizations without years of experiencing these rather crummy situations. Makes me wish that current me could have made a time travel visit to newly diagnosed me brimming with tips tricks and encouragement.

BUT.....

Newly diagnosed me would probably have looked at current me with skepticism and disbelief. I would have loftily informed current me that I was not going to let this disease limit any aspect of my life and that surely in 16 long years science would cure autoimmune disease, for cryin' out loud.

Yeah. Bratty Inner Child Julia has been around since I was born, I suspect.

So I suppose it's actually been necessary for me to slog through all these years; to experience it all.

Bah.

But here I am. And it's going to be OK. I mean, if I didn't have a disease that occasionally anchors my butt to my recliner I sincerely doubt that THIS EPIC EVENT COULD HAVE HAPPENED:


Did you KNOW THAT OCTOBER IS GODZILLA MONTH  on the Turner Classic Movies channel? 


Which forced -- yes, forced -- me to drag Terese and Greg and John to our living room last Friday to celebrate. Because Godzilla is awesome. And because they knew I just didn't have the energy to go out carousing that night.

And also forced John and Greg to wear GODZILLA hats while sitting through not one but TWO Godzilla goodness-filled movies.


I mean, I can thank Sjogren's for that fun filled evening.

Lesson learned.

Friday, September 27, 2019

Snapshots

Thanks to everyone that asked how life has been treating me this month. I'm happy to report that although a few issues remain -- and actually always will -- I'm doing fine. Just ducky, in fact.

I'll update y'all by the easiest method I know: pictures.


Marcasaurus, my amazing grandchild, continues to develop skills at lightning speed. Here he demonstrates his toe-chewing expertise. Wouldn't it be great to be as limber as this??


He also has shown an acute interest in climbing. Anything. And everything. So in the interest of providing a safe climbing toy, we bought this way cool baby play structure. IT HAS A PERISCOPE.


I've been on a quest for fall type decor for our new house. Unable to find exactly what I've been imagining for a front door wreath, I Frankenstein-ed together several items found at various stores and plunked it on the door. I love it. I hope it holds up so that I can use it again next year.


While in a crafty mode, I decided to keep it going by creating a minimalist twig shelter for my Saint Francis. I think he'd approve since he preferred to live outdoors. No warm cozy house for the saint in real life; and this certainly is not. I talked John into dusting off his boy scout skills and lashing together the twigs for me.


Oh, hey. This was exciting. We've been piling and piling stuff on the burn pit all summer, but because of the burn ban that's been imposed in our county, we haven't been able to get rid of all those blackberry vines and weed trees and dead branches. But the ban has been lifted so John and I pulled up some lawn chairs, dragged a garden hose out there in case of emergency, and lit the thing. I was expecting this big POOF of flame, but ah well....all we got was a slow and steady burn. Which, I guess is the best way to do it. We don't need a forest fire.

I did have one really traumatic episode, though. Brace yourself. It's brutal. AND IT HAPPENED MORE THAN ONCE.


So. All of these white plastic tubes are in my top vanity drawer; and I use all of them every day, just in very different places. If you catch my drift.

Only one is toothpaste.

Yeah. So in the morning, when I'm all dopey and still half asleep and I blindly thrust my hand into that drawer, I have a one in four chance that I'll grab the toothpaste; and without examining further, blob the contents onto my toothbrush and stick the whole thing into my mouth.

I just want to say here that Kenalog steroid skin cream tastes awful. As does athlete's foot lotion, and Metrogel topical rosacea gel.

You can take my word for it since I now have first hand knowledge. I think I'm going to take a marker and scribble something on the back of all these tube clones.


I wish I could share a picture of my newest friends here. I haven't been able to snap one yet, but hopefully soon. We have a pair of ravens that live in one of our trees. I've named them Ramon and Ramona. They're fascinating! Ramon has a deep croak, and I can tell the difference between his and Ramona's voice -- hers is slightly higher and she doesn't seem to be able to make as many different sounds. Ramon can croak and caw, but he also makes these really bizarre noises too. One sounds just like water dripping into a bucket. Another is some kind of electronic noise. I've been reading about how intelligent ravens are. I hope they figure out how much I like them. I keep trying to imitate their croak. I'll bet they just crack up when they hear my pathetic sounds.

Wonder what a raven laughing sounds like.

I decided to decorate my mantle with ravens for this Halloween. In honor of Ramon and Ramona.

Anyway, that's how things are going here. How are you?

Friday, August 30, 2019

Because I thought I Needed Something New

To borrow a quote from my friend Terese, GOOD GRIEF IN A BUCKET.

My body and it's antics never cease to amaze. Want to see my latest adventure?


So this is my arm and my IV with antibiotics flowing, and my very red and swollen and painful middle finger.

It all started last Sunday, when I woke up to a strange aching in my finger which progressed with amazing rapidity to an unbelievably painful hot swelling. Which left me phoning my clinic's advice nurse at four AM. Ice and elevation and acetaminophen had caused absolutely no observable improvement. 

Who knew that dinky little joint at the end of my finger could cause such pain?

The next morning found me at the clinic, and after a doctors exam, sitting in the nurse treatment center getting IV Rocephin. An X-ray ruled out a bone infection or joint injury, which meant I had a cellulitis, which is an infection in the soft tissues.

Whew, I thought. This has got to get better soon.

Wrong. It turns out that the Rocephin wasn't effective against whatever beastie had taken up residence in the soft tissues in my finger. Over the next 24 hours, the redness and swelling had progressed down the full length of my finger and had sent out pink tendrils down towards my palm.

It never occurred to me to try to document this with a photo. I was too busy gritting my teeth and trying to ignore the increased pressure and pain.

So, on instructions from my doctor, I dutifully presented myself to an ER nurse; who took one look and exclaimed, "Yuk!"

As a nurse myself, I appreciated this brief but accurate medical diagnosis. I wanted to throw myself and kiss his feet in gratitude when he went on, "Would you like something for pain? Must hurt like heck!"

Another IV and a different IV antibiotic followed. Also an exploratory incision by the doc hoping to find a pocket of pus to drain, but no such luck.

It appears that Clindamycin is successful in the battle against this infection.

Yay for modern medicine! And pain pills!

Although I'm making real progress, I haven't completely healed yet. But I will behave myself and keep up the icing and elevation and antibiotics.

We SHALL conquer. 

My goodness. What's in store for me next?!

Friday, August 9, 2019

Surprises and Chronic Autoimmune Urticaria


Last week, as I was floating in my hammock chair I saw something amazing: a perfect spider web that seemed to be suspended mid air.


So beautiful. How on earth did the spider architect anchor it? The connecting silk lines were almost invisible.

What arachnid artistry.

I snapped pictures of it from all angles.


This photo didn't turn out as well.....kindly disregard the hammock hair. 

What a pleasant surprise. I love those kind of surprises.

Then there's the other kind of surprises. I'm not happy with that kind.

Like this one:


Yeah. That's my old lady knee. Notice the strange red rash? Before I slathered hydrocortisone cream on it and took an antihistamine, it was in full-blown puffy hives mode. There were lots of them. On both legs. Accompanied by a vicious itch.

Not fun.

So these hive beauties have been showing up every night for the last few weeks; only to disappear promptly by 9:00 AM. And for the life of me, I just can't figure out why. I have changed nothing in my night time routine. I've used the same unscented laundry detergent for years, my jammies are literally decades old, and the sheets on our bed have been around forever. I use the same body wash, sunscreen, and moisturizers for what seems like forever.

My environment has been the same for a whole year, and I've been eating the same foods too.

So what's causing this very unwelcome and extremely strange change in my skin?

I have no idea.

The only thing that HAS changed is the absence of immune suppressing drugs in my body for the last six weeks. 

Is this related? Could hives be caused by an increase in autoimmune activity? I wondered.

After a bit of Google Scholar reading, the short answer is possibly yes. The long answers can be found here. Here's an excerpt:
Chronic urticaria is hypothesized to occur because of a predilection in the patient to develop reactions to self. Supporting this hypothesis, a strong association has been found between chronic urticaria and additional autoimmune diseases, such as thyroid disease, rheumatoid arthritis, systemic lupus erythematosus, Sj√∂gren’s syndrome, celiac disease and type 1 diabetes, among others. (Bolding mine) Continue reading here
It appears that Sjogren's syndrome can possibly cause hives like mine, also known as chronic autoimmune urticaria. Dr. Young Guy and I will be discussing this soon to try to determine the cause of my particular brand of hives.

Good grief. Is there any part of my body that ISN'T affected by autoimmune disease? 

Have you experienced chronic autoimmune urticaria?

Friday, July 26, 2019

The sun is not my friend. So let the shopping commence.

Dang. They're back.

My spots. Or, more accurately, the lesions from my Subacute Cutaneous Lupus Erythematosis.

After most of my neutrophils went missing last month, Dr. Young Guy discontinued my immunosuppressant meds and we adopted a wait-and-see king of strategy moving forward.

We're waiting to see if  a couple of things happen: first and most importantly, we're watching to see if my neutrophils or any of my other blood counts drop again. This would indicate that something more than a drug side effect was to blame.

Secondly, we're waiting to see what this old autoimmune body does in response to the absence of these medications. And, after five weeks, BICJ and I are annoyed. Actually we're downright crabby. Because a few things are making their unwelcome reappearance.

I definitely am beginning to feel the dreaded malaise creeping back -- that feeling as though I'm teetering on the edge of getting an infection. You know how that feels? As though you're running a temp (even though you're not) and my body aches everywhere. Ah, I remember this feeling well. I've experienced it ever since my first flare of disease activity back in 2003.

And, my rash is slowly making its appearance again. I'm spotty and dotty on my face, my shoulders, chest, back, and legs. There's far fewer lesions than I've had before, but they are definitely there and it seems that they are inviting their friends. Grr.

Dr. Young Guy has advised me to take my sun protection very, very seriously since exposure to UV light found in sunshine seems to raise autoimmune disease activity significantly. And, though I always have been careful, lately I've added a few extra tools in my arsenal in sun protection.

So I slather high SPF sunscreen everywhere first thing in the morning, and reapply it later in the day on my face and arms. After which I put on sun protective clothing.

Did YOU know that a regular cotton t-shirt, even if it is long sleeved, does not provide excellent UV protection? I didn't. But now I do after reading this, found here

A typical white t-shirt has a sun protection factor around 7, and this drops to about 3 when it is wet. - Carolyn Vachani RN, MSN, AOCN

My goodness. This informational nugget led me to the one and only pleasurable facet found in this whole experience: shopping. Yes. Because of my disease (insert poor me dramatic gesture here) I have been forced, yes FORCED, to increase my wardrobe considerably in the interests of keeping my autoimmune activity at bay.

Sigh. One does what one must.

I've discovered something very interesting about myself as I've acquainted myself with the various brands that specialize in sun protection: I love to dress like a golfer. I think long sleeved, lightweight, colorful golf polos are amazing. AND there's a tennis player lurking inside me as well. Wearing a crisp white stretchy top. With pants that bend and stretch where I do and a pair of comfy shoes.

Who knew?

Not me. Especially since I neither like or excel in either sport. Well.....I do have to concede that driving around a green manicured golf course in one of their carts is a lot of fun. And one has to appreciate a sport in which a drinks concession cart toodles its way around too. Nice. I think it would especially enjoyable if one was sporting a snappy high SPF golfing outfit and sipping an adult beverage.

Just don't put a tennis racket or a golf club in my hands, for heaven's sake.

So here are a few of my favorite finds so far.

Marcus loves sitting in the shade with his grandma. I love his little orange hat. 


I love love love the shirts made by Coolibar.

I wish these came with a guarantee that once I slipped it on I'd look like this gal.

I got mine on Amazon; I don't get any revenue should you choose one of these beauties BTW.

I've also discovered UV Skinz, and San Soleil. Both manufacture wonderful UPF 50+ clothing. But they're pricey. I sprung for full price for my first shirt then wore it continuously until I found more on sale.

Do you have a favorite brand of sun protection clothing?

Tuesday, July 16, 2019

It's a Mount Norway Miracle

Even though I am happy as the proverbial clam up here on my mountain, still I miss a few things about our old house.

For one, having my buddy Susan living across the street. I have tried to persuade her to move out this way, but she has the nerve to sincerely enjoy being a city girl. Go figure.

I also have been missing my glorious huge bathtub in that place. It was indulgently enormous -- big enough that I could put enough water in it to float. Sort of.

When we bought our new house I was thrilled that it too had a ginormous bathtub. And this one was a Jacuzzi with powerful jets.

How cool would that be when I'm aching all over, I thought.

l fired that thing up as soon as we had moved in and I wanted a bath.

AAAAAACCCCCCCCKKKKK!

Black strings and chunks began spewing from the jets.

Apparently the previous owners had never cleaned this thing. Disgusting.

What followed was a whole year of buying spa/hot tub/jetted bathtub products followed by endless hope that the result would be a tub filled with sparkling clear water.

It was an expensive and exhausting adventure. I am glad that we have our own well. I don't think we could have afforded the city water bill had we been in our old house.

Ah, but persistence paid off when this happened:



I couldn't believe my eyes. I rubbed them and looked again.

Wahoo!


Life is good; especially in my clean bathtub.

Sunday, July 14, 2019

Well.

Lots of folks have asked me what I've been up to over the summer; and since pictures are far better than lots and lots of words, here y'all go. But you know me: I still have to blab some. Just a little.


What I looked like going in to the clinic for lab draws during my neutropenia house arrest.

So my whites are back into normal range, and I am a free bird once again! This makes me very happy. Dr. Young Guy and I are embarking on a grand experiment to get more information that will give us a clue as to the cause of my neutrophil drop: I am not currently taking any immunosuppressants. We assumed the drop was drug related, but if I drop out again, this time without these meds on board, I will need a work up with a hematologist to evaluate further. We'll see how long this absence of treatment can go before all of my Sjogren's Syndrome symptoms rear their ugly heads.

My arch enemy. 
After all of my protective restrictions were lifted, I could resume my quest to eliminate these nasty Canadian thistles from every inch of our property. Just when I'm certain that I've conquered them, I find more. But I will persist and WIN this battle. So there.

We are starting to see some rewards for all of our outdoor efforts.






Back in June, we had some real excitement around here when a swarm of honey bees decided to land in one of our Douglas fir trees. I called our local honey bee club (who knew we even had one?) and a member brought out an empty hive in the hopes that they would move in. After a couple of days of buzzing and hanging around the tree about thirty feet up, they DID. Amazing. When it got dark, that night John and I wrapped the hive in a tarp, PUT IT IN OUR SUV AND DROVE IT 45 MILES TO ITS NEW HOME.


I still can't believe we were brave enough to do that.



Here they are climbing up into their new home. Crazy cool. 

Yes. John drove, and I sat in the back seat with the bees. Didn't see one escape the hive during the whole trip. All those little buzzers were sleeping for the night.






We also discovered this footage from our game camera in June. More than once, so we're guessing this guy lives in our back yard. I've named him Yogi. I think his ears are so furry and cute.



Most importantly, this cutie pie has learned to walk.




Tell Gramma EVERYTHING.

What fun. Sigh. It's good to look back at all the good times that far outweigh the less than good ones.

So. What have y'all been up to?

Tuesday, July 9, 2019

Sjogren's Advocate: Newly Diagnosed

Sarah Schafer, MD and Sjogren's patient

I can't begin to express my admiration and appreciation of Dr. Sarah Schafer for so many things, but most recently, the creation of her website: Sjogren's Advocate.

If you haven't had a chance to read it, pour yourself a cup of coffee, boot up the laptop, and settle in for a thorough education in current Sjogren's Syndrome diagnosis and treatment.

All of the entries to her site are excellent, but one page in particular deserves particular attention: For the Newly Diagnosed. I have included a few excerpts here but please visit this page to read the discussion in full.

Because Sjogren’s is a complex disease, it requires a team of knowledgeable clinicians to provide optimal care. Creating a core health care team is an important priority for new patients.  While currently there is no cure, a lot can be done to alleviate symptoms and prevent complications. 
Newly diagnosed Sjogren’s patients face special challenges. The stress of a chronic disease diagnosis is often made worse when patients discover that many clinicians remain largely unfamiliar with Sjogren’s.   There are numerous stories of patients who have had their symptoms downplayed, ignored or psychologized, both before and after diagnosis.  Sadly, it is also common for patients to hear conflicting or incorrect information from their clinicians. A separate section will be created to provide strategies for countering common misperceptions.  
Despite the fact that it is common, serious and multisystemic, little attention is given to Sjogren’s by medical training programs. This means that patients often need to educate themselves-and their clinicians- in order to advocate for comprehensive, up-to-date care. This may seem a bit backwards, and it is!  Still, it is a worthwhile investment to try to find providers who are engaged and/or willing to learn about Sjogren’s. 
........ 
Priorities for the newly diagnosed 
1. Learn these Sjogren’s basics 
Sjogren’s is a complex systemic disease. It is much more than dryness.
Sjogren’s patients should be treated by a team of knowledgeable clinicians.
Sjogren’s can be hard to diagnose: clinicians sometimes disagree on the diagnosis.The diagnosis section can help patients deal with this conundrum.
"Early diagnosis and high-quality professional care are extremely important for Sjogren's patients. Currently, there is no cure for Sjogren's. However, treatments may improve various symptoms and prevent complications."
The Sjogren’s Foundation: https://www.sjogrens.org/home/about-sjogrens/treatments 
2.Understand the main goals for treatment 
Improve quality of life, usually by treatment of systemic, eye, and oral manifestations.
Prevent disease progression of both systemic and sicca features.
Screen and monitor for direct complications of Sjogren’s. Prevent when possible and treat as indicated. 
Screen and monitor for comorbidities. Prevent when possible, and treat as indicated.
Some clinical issues are important to address early on. Others can be addressed over time, depending on each person’s unique needs. To learn about the major areas of clinical concern, see Sjogren’s- Another look. 
3. Gather a core health care team 
At a minimum, this includes a primary care provider (PCP), a rheumatologist, a dentist, an ophthalmologist, and for women, a gynecologist. Most Sjogren’s patients see at least a few additional specialists. Sometimes a specialist is the first person to suspect - or diagnose - Sjogren’s. 
Choosing a PCP and a rheumatologist that are a good fit is usually at the top of the priority list. However, specific symptoms or complications may place other providers at the top of the list.  
 “Rheumatologists have the primary responsibility for managing Sjogren’s and usually are the lead of your ‘medical team.’ “   ~  May 2019 Moisture Seekers Newsletter.
Continue reading here

Bookmark the Sjogren's Advocate site and visit regularly. You can also sign up for regular site updates. The information to be found there is invaluable for new AND seasoned autoimmune disease patients.

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