My Pregnancy and Sjogrens

I didn’t have a chance to write much about my pregnancy and I wish that I had.  At the time, it seemed like things couldn’t get any busier with my constant array of medical appointments, moving, and getting ready for baby.  What I’ve come to realize is that having a baby is even busier than having three to four doctors’ appointments per week and managing a chronic health condition, but that’s a whole other discussion.   Pregnancy and autoimmune diseases are an extremely important topic especially because the majority of people who suffer from them are women.

It used to be that many women with autoimmune diseases were told to forgo pregnancy.  This is no longer true for many of us, which is a welcome change. (I do realize that getting pregnant can be a difficulty for autoimmune disease patients, but I’m going to stick with my experience with the pregnancy part for now.) With careful pre-pregnancy planning and monitoring during pregnancy, it’s possible for things to go well and to be blessed with a healthy baby.  Now of course that doesn’t mean the pregnancies are easy and without risk, but a good outcome is no longer a rarity. In fact, a study from last year, the largest of it’s kind found that pregnancy is safer for lupus patients than originally thought with a 81 percent having what is medically called an “uncomplicated pregnancy”.  Click here.

For me, pregnancy was a bit of double-edged sword.  In order to make sure my baby was healthy, I had weekly fetal echo cardiograms throughout most of the 2nd and 3rd trimester.  These were critical to determine if the baby’s heart was developing correctly and did not develop “fetal heart block”.  Heart block can be a consequence of the SSA/SSB antibodies found in some Sjogren’s and Lupus patients.   I also saw my high-risk OB quite often in addition to my regular array of autoimmune appointments including rheumatology, rheumatology infusions, and ophthalmology to name a few.  To make things a little more tricky, my OB and pediatric cardiologist  (she monitored my baby’s heart) were at least an hour away so I would wiped out by the time I got back home.

The good news was that my Sjogren’s was much better while I was pregnant.  Yes, I felt the best I had in years.  My fatigue was less intense and I had more energy.  My neurological Sjogren’s symptoms were more in check and we were able to lessen the “pregnancy safe” medical treatments I needed.   Dare I say I felt pretty normal.  And while, many pregnancy women complain about brain fog for me it was also the opposite.  I felt mentally sharp again.   I “knew” this new state was probably temporary, but I secretly hoped it would last well past my baby being born.  I imagined going back to work part-time and excelling at both home, career, and motherhood and managing my health. (While material for another post, this was definitely too ambitious).

And I am not alone in having this experience.  Some autoimmune diseases are thought to improve during pregnancy.  My doctors who are Sjogren’s experts told me there was a chance that I would feel better based on their clinical experience.  Some describe pregnancy as a natural imuno-suppressive, which can be a good thing for those of us with over-active immune systems that go around attacking the wrong things.

This raises a number of big questions, which I am not nearly smart enough to answer.  What exactly happens during pregnancy that puts some autoimmune diseases into a less or more active state?  What role do hormones play in this process? And more importantly is it possible to replicate some of this without pregnancy?  I’m hoping that some scientists and doctors might already be tackling these questions.  If you're familiar with anyone doing work here please let me know.  I do wonder whether some of the mystery around pregnancy and autoimmune conditions may be part of the the key to better treatments in the future. 

I would love to hear from other autoimmune moms who were diagnosed prior to getting pregnant. I haven't been able to find very many.  What was your experience with autoimmune disease and pregnancy?

Being an Autoimmune Mama: The First Months

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The last months since giving birth to my daughter have been a wonderful adventure, surprising in so many ways... and overwhelmingly exhausting.  It’s hard to describe how much I’ve learned in such a short time from the basics of how to change a diaper and swaddle a baby –-which seemed daunting at first—to how so many things about motherhood feel instinctual to me.  I never understood how my friends would talk endlessly about the small things they would do with their babies. Now, I love the cuddling, cheek kisses, and silly games we play daily. Things that are interesting only to a parent of an infant, but now bring delight to me daily.  

At four months, we've now crossed the early infant stage and we're getting to the more interactive stage of the daily smiles, coos, and hand sucking that are all so much fun.

Now, for my confessional: I must admit that I had real fears before she came was that I would not be able to take care of her because of my health issues.  My worries ranged from big picture fears to specific practical concerns.  I literally lost sleep worrying that she would miss out on what she deserved from her mommy.  I didn’t want her to feel less love than other babies do because of my own health needs.

At the same time, I was also worried about the day-to-day practical challenge of lifting her and taking her around.   Would I be able to carry her if I was tired?  Would she just be trapped inside most of the winter because of neuropathies and arthritic pain? 

So far, I am pleased to be able to say that I have been pleasantly surprised. Yes, I am tired like any new mom…but I am thrilled to report that we are all ok. I am generally as healthy as I was prior to my pregnancy. My daughter, after an early arrival, has caught up and is growing and advancing well.

That’s not to say this has been easy.  My husband and I took steps to make sure we could mitigate the amount of strain I would have. We knew flexibility would have to be our motto... When interviewing pediatricians I realized distance would have to be a factor.  One got extra points because she lived a five minute walk from our house. Then, I wouldn’t have to lift the little one in and out of a car for every doctor’s appointment and could conserve some energy. 

At times, I would hear other moms to be and moms discuss their exact birth plans or how they would exclusively breastfeed and never give their child formula. My husband and I knew we had to approach everything with a different philosophy…what keeps me and baby healthy is the goal--not ultimate perfection. 

Here a few other steps we took to manage a baby with a chronically ill mama that I thought I’d share:

1)   Get Help! Let other family members pitch in and even feed your baby especially during nighttime hours so you can rest.  I found this extremely helpful for the late evening feeding around 11pm or midnight so I can go to sleep early and get some rest before middle of the night wake-ups.  As others know with autoimmune disease, sleep is key and without it symptoms can get worse. 

  

2)    As long as she eats, we’re ok! While breastfeeding is considered best according to my doctor, we also decided before our daughter was born she would also have formula sometimes to preserve my strength.  (It turns out that because she was underweight the pediatrician insisted that we supplement with formula anyway.)  Breastfeeding is exhausting even for healthy moms, but add autoimmune disease into the mix and it can be very depleting.  I breastfeed and pump as much as I physically can (about 5 times a day), but having formula as an option makes it easier for me to take a break when I need to.

3)    Convenience is key.  As I mentioned above, try to make everything as easy as possible for yourself like having a pediatrician nearby. There have been so many more doctors visits than I expected that being able to get there easily has been the most important thing.

4)    Limit Carrying. I try to carry less and order online if possible.  The need for diapers and baby supplies is constant.  When I lift things, I get more tired so I’ve found diapers.com and other baby sites to be a lifesaver.  They are also cheaper, especially when I find discount codes that I track down regularly.

5)    Freeze, Freeze, Freeze. If someone offers to cook for you, say YES.  Having a baby is depleting and I didn’t have the strength to cook at first.  Now that I’m basically recovered, there really isn’t much time to make a wholesome meal. I’ve tasked my mom with making food for me and freezing it so I have something that I can heat up quickly and have ready within minutes.

7)    Assign Tasks.  Being a mom means being a manager. If you’re lucky enough to have family and friends helping you, make sure to have jobs for them.  I promise something always needs to get done whether its dishes, laundry, or sterilizing bottles. Otherwise, everyone will just stare at your little bundle of joy. I learned this one the hard way when I found myself doing dishes after company came on four hours of sleep.

8)  Take time to be a family unit too.  I must admit having our home invaded with family has driven is driving my husband and I a little crazy.  We try and balance all the company by having one day a week when it’s just the three of us.

9) Hand-me-downs help!  At first I thought we would need to get everything ourselves since we had no family nearby with young kids. I found out that the more I talked to friends about what I was looking for, people started sending us stuff. Friends, relatives form afar, even friends from a moms group have all generously been happy to share . (I promised to give everything back of course.)

This is just a short list of things which have made having a little one easier as an autoimmune mama that I wanted to share. What have some of you done to make the infant phase a bit more manageable while living with autoimmune disease?  I'd definitely love the advice and I'm sure other moms  with chronic illness would to.

Beware: Sjöggie in the Kitchen

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So I'm starting to feel somewhat better as I mentioned in my last post.  I decided it was time to get back in the kitchen and do a little cooking.  One of my winter favorites is Turkey Soup.  I find it to be richer and tastier than chicken soup and the meat keeps its flavor even after simmering for over an hour.  

For me, however, even making soup can be an adventure. The story goes like this. I'm enjoying my new found post-flare freedom as I cook my delicious soup. I am stirring the soup.  Smelling the soup.  Pretending to be a real cook.  Then the timer goes off.  It is time to taste the very hot soup that has been cooking for close to an hour and a half. I take the ladle holding boiling soup and manage to pour it not in my mouth, but on my chin.  My mind must have been wandering at that critical moment. The soup was very, very hot.  Did I mention it was hot?  Lucky me, I now find myself with a burn. 

At first, I didn't think it was much of anything.   But my chin is quite red where the soup hit it.  No blistering at least, but I definitely have a burn there. I had planned this to be my well-deserved hiatus from doctoring.  Instead, I will be at the doctor bright and early tomorrow morning to make sure that I don't need to do anything to prevent it from scarring or getting infected.  

This is the danger of being both a Sjöggie and a klutz!  When my autoimmune symptoms seem to settle, I absentmindedly injure myself. Well, I guess at least this is a "normal"-person doctor visit.  

I don't want any of this to be taken as a knock on my favorite Turkey Soup. In case any of you want to try your own version, I've provided the super easy recipe below. As with all my recipes, it is adjusted for me significantly due to wide-ranging food allergies.  I'm sure others can add additional flavors, but I'm very limited...and I still think this tastes great. 

Please do beware in the kitchen, I don't want anyone else to injure themselves on account of this soup!

Winter Turkey Soup

Ingredients

2 Turkey Thighs (or other Turkey Parts of your choosing)

4-6 Peeled and Sliced Fresh Carrots, 

8 Small Potatoes 

Fresh or Dried Parsley

2 1/2 teaspoons Sea salt or Kosher Salt

Pepper 

6-8 cups of water

Directions

1) Place turkey thighs in soup pot.

2) Add any vegetables you desire and parsley on top of turkey. ***I'm limited in the ingredients that I can use due to food allergies.  But if I could I would also add garlic, onions, and celery.***

3) Pour six cups of water into pot or enough to cover vegetables and turkey.

4) Spice accordingly with salt and pepper.

5) Bring soup mixture to boil. It usually takes about 20 minutes.

6) Keep soup partially covered and simmer for 1 hour.

7) Stir occasionally and add an additional half cup of water if too much liquid has evaporated.

8) Once finished cooking, transfer turkey to bowl.  When adequately cooled, remove turkey meat from bone and add back to soup. 

9) Serve with your favorite noodles or rice. 

"A New Dawn for Sjogren's"

Wiki Commons: Sun Rising at Dawn

It was a good week for Sjogren's!  Three important articles that I saw in just one week.  I'm always pleased when I see more scientific research and attention being brought to the disease for us Sjoggies and I do hope this is a trend. "A New Dawn for Sjogren's":  I couldn't resist the headline from The Rheumatologist.

This article was particularly relevant to me since it linked Sjogren's and inflammation to local neurological pain. As most of you know, I have significant neurological symptoms with my disease. For a long time that was a real problem. Neurologists couldn't figure out what was wrong me and I ended up being prescribed pain drugs and basically told to go away.  There was not a perceived link between the pain and Sjogren's. This article goes in to how the symptoms that are often talked about as "benign" such as dryness, muscle and joint pain, fatigue, and brain fog to name a few can be the most pernicious.  As the authors Robert Fox, MD, PhD and Carla M. Fox, RN write:

In order to make a significant difference in the quality of life for patients with SS, new therapies must not only improve extra glandular manifestations of SS, also alleviate the symptoms (fatigue, dryness, and pain) that lead to patient disability….This will require better cooperation between rheumatologists and experts in the field of neural pain circuits. With a more focused effort, the complex interplay among immune, neural, and hypothalamic pathways in SS may finally be unraveled.

I've always known there was a link between my pain and the Sjogren's, but seeing a researcher detail it and call for new therapies is really welcome and I think may be helpful for others.  I would encourage anyone if you find an article with new research relevant to your symptoms, print a copy and take it to your next doctor's appointment. In my experience, bringing articles like these to the attention of my doctors helps them treat me. 

Given how many we are, the actual dollars spent relative to other conditions is still disappointing to me, but perhaps these announcements and calls for more research over the last few weeks represent a new trend! At least I can be optimistic they will help raise awareness among doctors, scientists, and patients that could really lead to "A New Dawn for Sjogren's" and some relief for us in the not so distant future. At least that's what I'll continue to pray and advocate for everyday.

What's to Blame in Sjogren's?

So, I don't pretend to be a scientist but I saw something that I felt I had to share with fellow Sjoggies. 

It seem scientists are finally beginning to understand what may be causing this autoimmune disease.  The culprit may be partially our natural killer (NK) cells.  Sounds like a science fiction movie?  No, it's our bodies.  

So what are natural killer cells? The short version is that they are white blood cells that are supposed to attack bad actors like viruses and tumors.  But for us Sjoggies instead of doing their job correctly, they direct their attacks at healthy cells and target them to die (check out the video below to see how NK cells are supposed to act).  The study I am referring to found that in Sjogren's patients these "killer cells" seem to be having a party.  These cells are more active AND they each have more receptors (called NKp30) on their surface, which are involved in triggering an immune response.  And there's more, scientists also found a relationship between having too many of these natural killer cells and dysfunction of the salivary glands--basically these cells could be linked to the parching, lack of moisture that many with Sjogren's experience.

The good news? If the research is right, scientists may have found one of the major causes of the symptoms that impact us Sjoggies…and the hope (fingers crossed) is that knowledge is power!  That this information may help researchers help us.  Will it be soon?  I have no idea, but I'm so excited to see meaningful research being done on our condition that I want to make sure as many people know as possible. I realize some Sjoggies can run marathons, but for many of the Sjoggies I know that's a dream. Even being able to work is a dream. Perhaps with treatments based on this research or other research, more Sjogren's patients will have the opportunity to realize their dreams without being held back by their autoimmune disease and that's something we can all hope for.

Study Raises Questions about Sjogren's and Plaquenil

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For many patients with Sjogren's, Plaquenil (hydroxychloroquine) has long been the go to drug that their doctors prescribe.  It is often the first line of attack before other more aggressive therapies are added such as methotrexate or rituximab that have bigger impacts on the immune system.

The other day one of my favorite bloggers, Julia from Reasonably Well, wrote about how she's been feeling since discontinuing her Plaquenil. 

I can tell that my meds have changed. I had almost (but not quite) forgotten what these aches and pains feel like, but they're back…I am re-acquainting myself with those symptoms that it tames: the overall flu-like and feverish feeling -- aka malaise -- and joint pain." (Click here to read more).

I had a similar experience when I stopped taking plaquenil.  It was one of those situations where I didn't realize the medication was having such an impact until I stopped it.  My joint and muscle pain went up and my energy levels went down.  Did the drug eradicate my fatigue and pain?  No, but it did alleviate some of the symptoms and improve my quality of life.  I have been on enough drugs to know when one helps.

So I was very interested when I saw on Twitter this study presented at both the American College of Rheumatology (ACR) and the European League Against Rheumatism's (EULAR) annual meetings:  Inefficacy of Hydroxychloroquine in Primary Sjogren's Syndrome: Results of the Joquer Randomized Placebo-Controlled Trial in Primary Sjogren's Syndrome.  Yes, that's a mouthful, but for those of us with Sjogren's and on plaquenil, it's a subject that's pretty relevant.

I haven't yet been able to find a published article with the study findings, but I was able to access the abstract.  The key findings cited:  At six months, 19.2% of patients receiving placebo and 19.6% of patients treated with HQ had a favorable response….No significant difference was observed in the evolution of systemic disease activity, dryness symptoms and quality of life. (Click here and go to L9 to read the abstract).

To summarize, the study found that at six months hydroxychlorquine (plaquenil) had no impact on a range of Sjogren's symptoms nor on disease progression.  While previous studies of the drug's effectiveness have been mixed, this study is considered important because it was placebo controlled, done with a larger population (still only 120 patients), and occurred over a 6 month period.  

So what does this mean for those of us who are having some success with plaquenil?  I'm really not sure. To start with, until the results are fully published it is hard to know what the complete findings were. For instance, I have since found other references (like this from the Journal of Musculosketal Medicine) which indicate that the complete results are less clear than the abstract--that patients who took the drug for one year did have significant improvements. I'm assuming full publication will help clarify some of these points. 

I am always very excited to hear about new Sjogren's studies, but given the limited information available I was a bit concerned to see some of the early reaction online. I have already seen a few doctors--on Twitter and in podcasts -- making reference to the same findings I have seen, with some indicating it may cause them to revise their treatments for Sjoggies. 

This gave me pause. I'm just one patient, but I would urge caution to anyone currently treating patients with the drug. I have first hand knowledge of the benefits of the drug and know from several other Sjogren's patients have seen them as well; in short the drug has helped at least some of us. Since there are so few treatments available, it seems important to have plaquenil as an option for others seeking relief for their symptoms until other treatments are available.  Taking one arrow out of an already thin quiver doesn't seem like progress.

While watching my doctors at work, I've observed that part of treating patients with autoimmune disease involves trial and error. I don't view this as an argument against evidence based medicine but rather an indication of the importance of clinical judgement when treating patients with the same disease diagnosis but divergent symptoms and disease trajectory. I don't see how 60 patients (number of study patients given plaquenil) can encompass all the variant manifestations of the disease. 

I hope doctors and scientists use this research as a motivation to do further studies on Sjogren's, as opposed to considering the issue of plaquenil settled. We just know so little about this whole disease that I hope each piece of knowledge we gain is seen for what it is--a little bit of a puzzle revealed, but one that will take years and many studies to become clear.  Hopefully, one day in the not to distance future, newer, more effective treatments will make this whole thread irrelevant. 

Have you taken plaquenil and what was your experience?  

The Vitamin D Drops

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It seems almost every week I read a new article about the importance of vitamin D in protecting against autoimmune disease and preventing its progression for those who have it.  A straight forward discussion of some these findings can be found here.

I've heard from many of my fellow bloggers and readers that when they were diagnosed with autoimmune disease, their vitamin D levels were low.  The same was true for me.   One of my doctors suggested a couple months ago that I try to move from taking 50,000 IU of D once a week to supplementation of 2,000 IU daily.  A huge difference of 36,000 IU weekly.  I figured this would be an experiment--a vitamin D challenge of sorts to see if my levels could stay within normal range.

Last week's doctor's appointment was the moment of truth.  And it turns out that my D levels have plummeted  since changing my dosage.  As a result, I'm back up to 50,000 IU weekly, at least for the next 12 weeks.

What is particularly interesting is that over the last month, I noticed my energy levels had dropped and my brain fog was more apparent.  I was definitely spending more time resting trying to fight that intense autoimmune fatigue.  I'm wondering if there's a relationship here -- did lower vitamin D lead to more Sjogren's symptoms for me?  It also left me thinking whether there is something about autoimmune disease that makes it difficult to metabolize or absorb Vitamin D, leading to the need for higher supplementation. But this is of course a question for the research physicians and scientists out there.

It is true that I don't spend much time in the sun and when I do, I always wear sunblock to prevent evil flares.  However, I was still taking more than twice the Institute of Medicine's current daily recommended dosage as shown below in this chart from the National Institutes of Health Vitamin D fact sheet. 

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D 

Age	Male	Female	Pregnancy	Lactation
0–12 months*	400 IU (10 mcg)	400 IU (10 mcg)
1–13 years	600 IU (15 mcg)	600 IU (15 mcg)
14–18 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg
19–50 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)
51–70 years	600 IU (15 mcg)	600 IU (15 mcg)
>70 years	800 IU (20 mcg)	800 IU (20 mcg)

I now know that regular supplementation even with a conscious effort to eat foods high in D like fatty fish just doesn't cut it for me.  I'll have to see what my doctor suggests in three months to try and keep these levels normal. 

Have you noticed a relationship between your autoimmune symptoms and vitamin D levels?  

Autoimmune Fatigue: Reaching The Tipping Point

While the details are different, this is probably a story familiar to other readers.  I've been officially diagnosed with AI disease for a few years now and you might think that I would not let an increase in my energy levels lead me to overdo it.  But it is an inexact science to gauge my tipping point or that magic cut off between feeling good to having overwhelming  fatigue.

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At the beginning of the week, I had energy.  I was a very excited to welcome this old friend  that makes rare appearances back into my life. I was able to walk the city streets at the same pace as others. Dare I say there might have even been a bounce to my step. My future seemed to  have a few more possibilities than usual--would working if even part-time be an option?  Maybe  I would be able to get to some of those house projects that have been piling up?

My feeling good also corresponded to an upcoming work event that my husband had to attend. I wasn't initially planning to go, but I decided why not attend now that I was feeling  up to it.  I realized that I hadn't been out in so long that I needed to go shopping for something to wear.  But I soon found that going to stores and the actual act of trying on clothes is extremely tiring.  That creeping fatigue and pain started to set in the day before the dinner.

I rested beforehand as has become my routine whenever I have  plans.  Still I wasn't sure if I could make it though the evening, but I was determined to be there.  I had made a decision and I wanted to stick to it!  Yes, some have called me stubborn before.  In the end,  I managed to attend and was proud of myself for just getting there.  I even made  it through the evening and although my energy had started to seriously dwindle before I arrived,  I was buoyed in the moment by socializing and meeting new people.  I rose to the occasion.

Now, the next day was certainly a different story. I had pushed myself too far.  My fatigue was complete and overwhelming and my entire body ached.  My neurological symptoms were also  rearing their ugly head. I had crossed the tipping point of overdoing it and I crashed.  It took me a two day couch-rest to recover and begin to recoup some of my energy. 

Was it  worth it? Most definitely. I won't make a habit of overdoing it and using my energy sparingly  is critical, but there are occasions when the benefits outweigh the after effects.  The  trick is choosing these rare occasions very wisely and not too close together.  I do wish there were a monitor that would alert me each time a rest is needed before the fatigue sets in.

Top Ten List from the Sjogren's Conference

Majestic DC Cherry Blossoms

I attended the Sjogren's Syndrome Foundation's National Conference this past weekend and I am so glad that I did.  It was a huge effort to travel and participate in the conference, but I can say with complete certainty that any fatigue I am feeling now was well worth it.  It was super amazing to be around other Sjoggie's and have the opportunity to compare notes about how we cope with the disease. Never could I have imagined that I would be sitting in a room with almost 400 Sjogren's patients listening to doctors talk solely about SS. What a relief it was to know that the person sitting next you on you left and right could relate to what it is like to have this disease.

The doctors who presented are not only Sjogren's experts, but advocates in their own right, trying to improve research, treatments, and clinical care for their patients and others around the country.  After this weekend, I am even more inspired and ready to keep working to spread awareness about Sjogren's.

I thought I would share my top ten list from the Sjogren's Conference ranging from the medical to the social.  Now this isn't a Letterman style comedic list as we all know Sjogren's is serious.  Of course, there was so much more beyond this list from the Conference so I promise there will be other tidbits in upcoming posts. 

Top Ten List

1)  One of the biggest obstacles to improving the lives of Sjogren's patients is convincing pharmaceutical companies to fund and invest in research and clinical drug trials for Sjogren's. 

2)  Myth Busting that Sjogren's is more than a "dry mouth and dry eye disease" is critical. I actually didn't meet anyone this weekend who only had these symptoms.

3)  The cognitive symptoms associated with Sjogren's such as brain fog are not thought to be progressive like other diseases such as alzheimers. What a relief!

4)  Up to 50% of Sjogren's patients with neurological symptoms do not present with SSA or SSB antibodies.  This can cause delays diagnosis. 

5)  The average time to diagnosis of Sjogren's has decreased from an average of 7 to approximately 5 years in part thanks to the Sjogren's Syndrome Foundation's (SSF) 50% in 5 years Campaign.  But we still need to get it down to 3.5 years and even lower and lower.

6) Clinical guidelines for how to treat SS and its many manifestations will be coming out soon thanks to the SSF.  These will hopefully help more doctors help us.

7) Venus Williams and Shannon Boxx fellow Sjogren's patients are working with the SSF now to bring attention to the disease. Yeah! Having high profile folks involved, helps bring attention to the disease. (I have an important story to tell here for my next post so stay tuned) 

8)  Sjogren's is as prevalent as breast cancer.  This means that the number people diagnosed with Sjogren's is equivalent to the number of people currently with and who have survived breast cancer.  

9)   Sjogren's is the 2nd most prevalent autoimmune disease. Only 2nd to RA. Awareness and funding for Sjogren's should be on par with other high prevalence autoimmune disease. This is not the case today.

10)  Sjogren's will only become a household name if we stand up, get involved and talk about our disease.  We need to be an army of over 3 million.

Any other readers out there who attended the conference, please feel free to add and keep this list going!  Remember share this list or your own with others to keep spreading the word.

Living with Autoimmune Disease: Finally Some Eye Progress!

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Given that the trials and tribulations of daily life with autoimmune disease sometimes seem to fill my posts here, I try to make sure that I share the good news with readers as well. And I have some good news.

While it might sound like a small thing, at my most recent ophthalmology appointment my physician said "your corneas look good".  This was like music to my ears.  That never happens, despite my best efforts.  The news actually put me in a happy mood for the rest of the day.  I called my husband, my parents, and even some friends after my appointment to share the good word with them.  Now this celebration might sound like overkill, but for me this was truly exciting since I never seem to catch a break.  As many of you with autoimmune disease know, it is not that often that our doctors appointments involve unequivocally positive reports.  My eyes had been feeling better recently--but in the past that has not necessarily meant that I did not have corneal inflammation or uveitis. I have actually come not to trust how my eyes feel as an indication for how they look.

This news was particularly fulfilling, because I actually felt like I had done something which had the effect of improving my health.  I had made a concerted effort to follow a strict routine to care for my eyes, which takes an incredible amount of time on a daily basis, and it was paying dividends.  (I have written about my routine in multiple blog posts click here, here, and here).

It is rare at least for me (and I am guessing for others with AI disease) that our actions seem to matter.  I try to do all the right things my doctors tell me to do to help my condition. It is time consuming and sometimes I have wondered if it makes any difference.  Well, I guess it is currently helping.  At least my eyes.  So I will certainly be keeping up with it.  I know this bit of good news does not mean that my eyes will necessarily stay stable.  But for now, I will just keep smiling and hope my eyes remain cooperative for a while longer.

Autoimmune Adventures: My Multi-Colored Feet

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My feet are not the usual topic of my blog posts, but they have been doing something new and interesting lately.  Usually they stick to just being blue and cold from Raynaud's especially during the winter months.  Raynaud's syndrome often occurs secondary to other autoimmune diseases.  Fortunately, it is not something that creates real disruption in my life and I able to manage it without too much effort relative to my other autoimmune issues.

But it seems my feet decided that they needed some more attention from me and my doctors.  Recently, some of my toe joints on both feet have started to swell.  Along with the swelling they turn red and hot and can be painful to the touch.   Now my feet are a combination of red, white, and blue -- maybe it's their attempt to be patriotic. Just my luck, I had my rheumatology appointment two days before this symptom started. Again, my body being characteristically uncooperative.

I know joint swelling can occur with Sjogren's and other autoimmune connective tissue diseases. However, I have been told that with Sjogren's the swelling is in many cases on one side or unilateral and affects the larger joints.  My swelling is on my both feet and on the smaller toe joints.  I did have a regular follow-up with one of my other physicians this week and he is pretty positive this is a new part of my soup of autoimmune symptoms.  I have taken pictures of my colorful feet to email to my rheumatologist for his opinion. Though it does feel a little strange to be emailing pictures of my feet. This is another medical puzzle provided by yours truly for my rheumatologist to figure out.  I guess you could say I always like to keep my docs on their toes (pun intended).

We Need More Research for Sjogren's Syndrome

Sjogren's Awareness Bracelet

I had a hunch for some time that there weren't enough studies on Sjogren's Syndrome (SS).  In reading articles about recent autoimmune disease research, it seemed there were more studies on other diseases.  Well, it turns out that my hunch might not have just been a hunch.  In a review published last month in Expert Opinion in Pharmocotherapy evaluating treatments for Sjogren's, the authors found that there are have been few large studies on how to effectively treat primary SS.  Click here for the abstract. 

Given the high prevalence of Sjogren's among autoimmune diseases this should not be the case. 

Most larger random controlled trials (RCT -- which are the gold standard in scientific research) have focused on evaluating how a treatment effects symptoms of dryness for SS patients. As I have written about before, Sjogren's is more than a dry mouth and dry disease and patients can also experience other debilitating symptoms such as fatigue, muscle and joint pain, neurologic, and organ involvement.  It's far from a fun combination of symptoms and more research clearly needs to be done on how to improve these serious complications of SS.

A few points this article really hit home and made me realize that Sjogren's patients should expect more from the scientific community and must continue to push for more comprehensive research whenever possible.

• A good deal of the treatments used to for symptoms of SS is based on research from other autoimmune diseases such as SLE and RA.  This is even true of the use of corticosteroids and methotrexate.

• Studies involving Sjogren's patients often involve a small number of patients and in larger studies the focus tends to be on symptoms of dryness or glandular aspects of the disease.  

• Biologic therapies targeting B cells seem to the most promising area of treatment including the use of rituximab and epratuxumab.  Surprisingly, there have been more studies on rituximab and greater evidence for its use in Sjogren's patients than there have been for immunosupressive treatments such as methotrexate.  However, rituximab is still considered an off-label treatment for Sjogren's.  I'm not a doctor or scientist, but this doesn't seem to make much sense.

• The good news is that authors see the treatment of Sjogren's improving as biologic therapies become more specific. Two trials are in thew works using Belimumab (Benlyista), which targets the activation and stimulation or over-stimulation of B cells.  It has already been approved in the treatment of lupus.

I agree with the authors that we need more and larger trials specifically designed for Sjogren's patients, and especially trials focusing on the systemic aspects of the disease.  Sjogren's patients should not just be treated based on outcomes from trials and research for other autoimmune diseases.  That would seem obvious, but it's not the case today. 

A Modest Proposal

Here's an idea. It might seem simple, but to me it would be a big improvement if there was a way for doctors to share and compare the way they treat their patients. This would be a Sjogren's Syndrome Treatment Registry, similar to the Sjogren's International Collaborative Alliance funded by the NIH. Specifically, this would mean there would be a database kept by each hospital about each patient treated with SS, including symptoms, treatments, and results. It would be anonymized, of course.  

From my discussions with physicians, this registry would be quite helpful to them. Most say they are working with little actual data, and are largely confined to the clinical patients and results they see. (This is a larger problem in medicine I realize, but for specialized diseases I believe it is even more acute.) This data could also help provide insight into what trials should be funded.  Furthermore, a registry could help doctors and scientists systematically match specific disease complications to which treatments are successful or unsuccessful.  As many of us with autoimmune disease know, what works for one patient does not always work for another and rheumatologists often try a number of treatments before finding one that works.  

So, all this said, why is Sjogren's ignored to date?  I don't know, my husband claims we have bad branding. Could it be the name? It is hard to say and spell and that makes it hard to raise awareness in some ways he claims.  Maybe there's something to it. I don't know, but there doesn't seem to enough action in the area at the moment. 

Of course, more studies and funding are not only needed for Sjogren's but also for autoimmune diseases generally.  And it is the perfect time for all of us to put on our lobbying and activist hats because March is Autoimmune Disease Awareness Month. There is lots of work to be done. Our collective voice can make a difference.

How do you think we can improve research and treatment for SS and other autoimmune diseases?

Can My Eyes Really Get Drier?

Sahara Desert

Although I did not think it was possible, my eyes have actually gotten drier.  I guess we’ve moved from a regional desert to the Sahara.

Now, my eye history is long and complicated. My symptoms are made worse due to a previous corneal infection and subsequent scarring, which my doctors attribute to Sjogren's. I also have had uveitits, another serious eye condition which needs to be kept under control or can lead to vision loss. I also have seriously dry eyes, related to my Sjogren’s as well.

Last week, my eyes started to really bother me in a way I have come to associate with serious flares. I became extremely sensitive to light (again!, but it had been a while) and developed constant eye pain, to the point that putting in my usual preservative free drops in my eyes was quite painful.  My right eye became so uncomfortable that I had to use an eye patch just to watch TV. Looking at a computer screen was out of the question.

Generally, when I have a flare up, I put extra drops in my eyes. This time that made my eye hurt more, so I immediately became particularly concerned.

Early Sunday morning my husband I bundled up and trundled off to the emergency eye clinic, where my doctor wants me to go if anything out of the ordinary happens to my eyes.

The good news is that there was nothing requiring emergency care like a flare of my uveitis or an infection.  However, the doctor did notice that my eyes particularly the right eye was extremely dry to the extent that the layer that covers the front of the cornea or corneal epithelium had been effected. This extreme dryness she explained was why I could not put drops in my eye without pain; dryness this severe can feel like a corneal abrasion. Ouch! 

Of course, my blepharitis and ocular rosacea were also simultaneously in full force, which also contributes to eye discomfort. 

The doctor suggested using my nighttime eye ointment (my preference is Refresh P.M. Sensitive but there are a number available) frequently during the day to improve the lubrication, more warm eye soaks, and re-starting steroid eye drops. It was a bit of a surprise to me that my eyes could still be so dry given how much time and how many steps I take each day trying to keep them moist. I guess that is what happens with Sjogren's.

I thought I would share my daily growing eye care routine for my dry eyes and blepharitis.  

What do you do everyday to help combat your dry eyes?

~ Preservative free drops about 8 to 9 times a day.

~ Restasis 4 times a day as prescribed by my doctor

~ Steroid eye drops as prescribed by my doctor

~ Warm eye soaks 2 times a day.

~ Ocusoft lid cleanser

~ Preservative free nighttime eye ointment

~ Humidification every night for dryness

Giving 'em Lip - Sjogren's, Salivary Glands, and More Fun

Image Source

A few months ago, I developed what l thought was just an ulcer on my left inner low lip. Mouth ulcers can occur with autoimmune disease and I have gotten them in the past so I thought little of it.  However, unlike other ulcers I have had, this one never went away in the following weeks.  It would grow and shrink, but it didn't completely disappear. It became more of a problem when it got in the way of chewing and I bit down on it by mistake.  It was not a very pretty picture and I was left with a multi-colored purple and red ulcer. (Apologies for the overly graphic descriptions, but I know they help me some times to compare what I have to what others' describe.)

In both October and November, I did show my mystery mouth ulcer to one of my physicians. He didn't seem very concerned and suggested a baking soda rinse to see if that would make it go away. Unfortunately, the baking soda rinse didn't do the trick and when I was back in his office he decided to take a closer look and feel this growth. The ulcer was hard and he said needed further investigation--maybe even a biopsy --to find out what was going on.  Like most patients with numerous medical conditions, my first thought was "oh no not another medical problem!"

My personal preference is not to have anything invasive done unless it is absolutely necessary even if it was what many doctors would consider a minor procedure. I'd love to hear what happens to others, but whenever I have "minor" procedures I seem to get all the "unexpected" side effects.  I'm convinced it's because of my immune system's malfunctions, but most doctors just don't take it into account when ordering invasive tests. Of course, I tell them and they say "don't worry" and then it happens to me. Yep, I'm the one who still has a numb lip from my Sjogren's biopsy. So instead of agreeing to go ahead with the biopsy, I  figured I wanted to see what my ENT might say later in the week at an already scheduled appointment.

Luckily, my ENT physician identified the cause of my mystery mouth sore immediately. It actually wasn't a sore or ulcer at all, but a cyst or mucocele cause by a blockage of minor salivary glands in my lip. The salivary glands are involved in the inflammatory process of Sjogren's syndrome, which is why many of us with Sjogren's have dry mouths and sometimes painful and enlarged salivary glands. (You can see the picture above of salivary glands.) I was aware with Sjogren's that the major salivary glands the parotid, submandibular, and sublingual glands can become blocked or swollen, but it turns out that we also have somewhere between 600 to 1000 minor salivary glands located throughout our mouths in places like our lips and inner cheeks. These minor salivary glands can also be impacted by Sjogren's, which is apparently exactly what is happening to me.

For now, the ENT doctor said we can wait and see if the cyst resolves with increased hydration and warm salt water rinses, but most likely I will need to have it removed.  Even though it is considered an "easy" procedure, I am very much hoping that it will go away on it's own and to avoid having any sort of cutting of my lip.  If folks have had experiences getting rid of these without a procedure I would LOVE any suggestions.

Sjogren’s, Vitamin-D, Neuropathy, and Lymphoma

Image Source

Those of you who follow me on twitter (@autoimmunegal) know that I am always tweeting health and medical research studies on autoimmune diseases. Yes, that may make me a little bit of a nerd, but that is OK with me. Along those lines, I recently came across an interesting study (thanks to a tweet from the Sjogren’s Society of Canada) that I thought was very important to share.  This study from the Journal of Autoimmunity found a link between primary Sjogren’s Syndrome (pSS) patients with low vitamin-D levels having peripheral neuropathy and having lymphoma. 

It is important to mention that this research is the first to find a relationship between low vitamin-D and the risk of lymphoma for those with Sjogren's.  There have also been very few studies to date examining vitamin-D levels and their impact on Sjogren's patients.  The authors write with regard to neuropathy that “vitamin-D deficiency may be a component in the pathogenesis of neuropathy in pSS.”  They then conclude that  their research “may warrant the need for a tighter monitoring of vitamin-D among patients with pSS."  You can see the article's abstract by clicking here.

Low vitamin-D levels have been correlated with autoimmunity in some studies.  In addition, vitamin-D has been found to have a protective effect in preventing the development of AI diseases such as lupus, rheumatoid arthritis, autoimmune thyroiditis, and Type 1 diabetes.  Some studies have even shown that higher levels of vitamin-D are associated with decreased cancer risk including for non-Hodgkin’s Lymphoma, but as is often the case with scientific research there have been conflicting studies and controversy in this area.  Basically vitamin-D seems to be powerful stuff. 

When I was diagnosed with Sjogren’s almost two years ago, I was found to have both low vitamin-D levels and severe neuropathy.  This study might shed some light on patients like me and serves as big reminder that I best keep taking my vitamin-D supplement.  I take a daily over the counter supplement and I do try to have foods high in vitamin-D a few times a week, but that doesn't always raise my vitamin-D level high enough.  When my levels are low, my doctor usually prescribes a 12 week course of 50,000 IU of D3 once a week.  That usually does the trick to get my vitamin-D in normal range.  

The results of this study certainly gives me and others with Sjogren’s MAJOR reasons (lymphoma and neuropathy) to talk to our doctors about vitamin-D and take our supplements if they recommend it.  I actually haven’t had my vitamin-D levels (a simple blood test) checked in some time so that will be added to the list to discuss for my next rheumatology appointment in a couple months.  If you want to read more about vitamin-D and autoimmune diseases, check out some of the links I listed below (please feel free to add your own as this list is far from comprehensive). To learn more about lymphoma and Sjogren’s, click on this link to a recent post from Julia’s blog Reasonably Well on the topic.

Were your levels of vitamin-D low when you were diagnosed with autoimmune disease?  By the way, make sure to talk your doctor before making any changes to your vitamin supplements.

Vitamin-D and Autoimmune Disease Resources

General Article
http://www.ncbi.nlm.nih.gov/pubmed/17699936

Autoimmune Thyroid Disease
http://www.ncbi.nlm.nih.gov/pubmed/21751884
http://www.ncbi.nlm.nih.gov/pubmed/21278761
http://www.ncbi.nlm.nih.gov/pubmed/22876540

Lupus and Vitamin D
http://lupus.webmd.com/news/20111107/vitamin-d-shows-early-promise-against-lupus
http://lup.sagepub.com/content/17/1/6
http://www.ncbi.nlm.nih.gov/pubmed/23204220

MS and Vitamin D
http://www.nlm.nih.gov/medlineplus/news/fullstory_131463.html
http://www.neurology.org/content/77/17/e99.full.pdf
http://www.ncbi.nlm.nih.gov/pubmed/23186958

RA and Vitamin D
http://www.sciencedaily.com/releases/2010/04/100407121227.htm
http://www.medscape.com/viewarticle/737639
http://www.ncbi.nlm.nih.gov/pubmed/23200062

Sjogren's and Vitamin D
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1004203/
http://www.ncbi.nlm.nih.gov/pubmed/19946023

Type 1 Diabetes and Vitamin D
http://health.ucsd.edu/news/releases/Pages/2012-11-15-vitamin-D-and-type-1-diabetes-link.aspx
http://www.direct-ms.org/pdf/VitDOtherAuto/MathieuVitDIDDM.pdf
http://www.ncbi.nlm.nih.gov/pubmed/22913562

Sjogren's Conference at Baylor University

There is going to be a Sjogren's conference this weekend at Baylor University in Texas.  Since I'm located super far from Texas, I won't be able to attend.  Hopefully some other Sjoggies out there will be able to join and report back to the rest of us.

The other good new is that Baylor has recently opened its own Sjogren's Center that includes includes rheumatology, otolaryngology, dental medicine, and ophthalmology.  It joins the University of San Francisco, the University of Pennsylvania, Johns Hopkins University, and the National Institutes of Health which each have a Sjogren's Center or Clinic.  Every center offers a slightly different model in terms of the specialties of the physicians that practice there.

The purpose of these centers to provide a more comprehensive, multidisciplinary, and coordinated level of care to patients--a one stop shop for your most of your Sjogren's needs.  While nothing in medical care is ever quite that simple, the idea of having doctors located in the same hospital who focus on Sjogren's makes quite a lot of sense to me.  I do hope more of these centers start to emerge.  It will mean that more attention and funding is being given to Sjogren's, that physicians are focusing seriously on the disease, and those with Sjogren's will hopefully be diagnosed earlier and get better care.  Let's hope this is a growing trend!

Sjögren's syndrome conference at Baylor College of Medicine Oct. 27

HOUSTON -- (October 16, 2012) -- Learn more about Sjögren's (SHOW-grins) syndrome at the inaugural Sjögren's Syndrome Conference at Baylor College of Medicine Oct. 27. The conference will be held at the Lee and Joe Jamail Specialty Care Center, 1977 Butler Blvd., Houston, TX 77030, room E4.125. The event is from 9 a.m. to 1 p.m. ending with a question-and-answer session with lecturers.

Since this disease has a wide range of symptoms, experts from more than five different specialties will be on hand presenting background information, as well as current research surrounding their field related to the disorder.

There will also be a presentation about the new Sjögren's Syndrome Clinic at BCM, which began seeing patients this summer.

Sjögren's syndrome is a disorder of the immune system that causes white blood cells to attack moisture-producing glands throughout the body. Symptoms include dry or burning eyes, dry mouth, difficulty swallowing, peeling lips, increased dental decay and vaginal and skin dryness. People frequently experience severe fatigue and joint pain and many patients have involvement of other organs, including the lungs, kidneys, brain and digestive organs. Sjögren's can occur alone but many cases occur along with other autoimmune connective tissue diseases like rheumatoid arthritis, lupus or scleroderma.

For reservations, please contact Shani Corbière at sjogrens@att.net or call 281-221-0068.

Schedule of Conference Speakers:

9 a.m. - Introduction
Shani Corbière - Sjögren's Syndrome Houston support group director

9:10 a.m. - BCM Biology of Inflammation Center Dr. David Corry - chief of immunology, allergy and rheumatology at BCM

9:20 a.m. - BCM Sjögren's Syndrome Clinic Margaret Olfson - senior ophthalmic technician in ophthalmology at BCM

9:30 a.m. - Rheumatological Manifestations of Sjögren's Syndrome Dr. Tara Rizvi - assistant professor of medicine - rheumatology at BCM

9:50 a.m. - Dental/Oral Manifestations of Sjögren's Syndrome Dr. Charles F. Streckfus, professor, Diagnostic & Biomedical Sciences at University of Texas School of Dentistry at Houston

10:10 a.m. - Question and Answer session

10:25 a.m. - Break

10:40 a.m. - Head and Neck Manifestations of Sjögren's Syndrome Dr. Nadia Mohyuddin - assistant professor of otolaryngology - head and neck surgery at BCM

11 a.m. - Eye Manifestations of Sjögren's Syndrome - Dr. Stephen Pflugfelder - professor of ophthalmology at BCM and director of the Sjögren's Syndrome Clinic

11:20 a.m. - New Research findings at BCM Dr. Cintia de Paiva - assistant professor of ophthalmology at BCM

11:35-1 p.m. - Question and Answer and Discussion

"You Only Have Sjogren's"

"Only."  If it were "only" anything. What a dreaded word for many of us afflicted with this condition.  It's something I, and most others I know, have heard variations of before...from friends or colleagues.  But I don't expect to hear it from a doctor.

I was seeing a dermatologist for complications my doctors believe were related to my autoimmune disease. The resident came in first and asked about my rheumatological history.  When I said I had Sjogren's--which is only one part of my complicated history--his comment was, you guessed it, "You Only Have Sjogren's".   I could have strangled him with his stethoscope right there. Really? Only?  Like he had any idea what that meant.

At that moment, I decided that I needed to speak up instead of reaching for his neck.  If I had said yes, I would have been an accomplice in aiding and abetting ignorance. Playing into his ignorance that Sjogren's was not a serious, potentially multi-system, and disabling disease.  So, I opened my big mouth trying to strike a balance between being polite and firm and decided to start educating.  I informed him that "saying I only had Sjogren's is just not accurate" and I went on to outline some of the specifics of my illness and how it has affected my life. I included the fatigue, joint pain, eye pain, pulmonary problems, and, in my case, cranial neuropathies as well.  He seemed to think Sjogren's was just the dryness disease.  I almost laughed as I told him "I wish."  I am hoping that hearing my story of the years until diagnosis (some painful irony that this doctor was with the same hospital which had never figured out my diagnosis) and the range of symptoms I possessed would change how this doctor viewed the disease and would treat his future patients.

I have heard other doctors and lay people make this type of statement before. Though I always found it troubling in the past I would have often said nothing.  But I've decided educating everyone I can is a small thing I can do for others with Sjogren's.  If patients with Sjogren's like me are not going to educate others, the widespread lack of awareness will certainly stay the same.  People will continue just to associate Sjogren's with dry eyes and dry mouth--aliments that many consider a nuisance and can easily be managed (although we know even those symptoms are not so simple).  They will not understand how you can be disabled when you have Sjogren's and assume you can function just like anyone else.

I'll give the resident some credit. I think after recovering from being stunned after my lecture, he seemed to understand this was something he probably should think more about in the future.

This whole exchange got me thinking and doing some additional research. I wondered what the standard literature said. A little bit of google research took me to the American College of Rheumatology Sjogren's Patient Education Page.  Lo and behold, Sjogren's is made to sound like a very manageable disease where symptom relief mostly focuses around dry eyes and dry mouth.  A few eye drops and you should be all set. Complications beyond dry eye and dry mouth are made to seem like rare anomalies and it would appear those with Sjogren's have to make very few life changes.

To quote them:

BROADER HEALTH IMPACT OF SJÖGREN'S SYNDROME
A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.

Rarely, patients may have complications related to inflammation in other body systems, including:

• Joint and muscle pain with fatigue
• Lung problems that may mimic pneumonia
• Abnormal liver and kidney function tests
• Skin rashes related to inflammation of small blood vessels
• Neurologic problems causing weakness and numbness

In a small number of people, Sjögren's syndrome may be associated with lymphoma, a cancer of the lymph glands.

Well, lucky me I've got four of them.  Most others I know who suffer from the condition have multiple symptoms and the list above is not even extensive (Check out this diagram from the Sjogren's Syndrome Foundation for a more comprehensive list of symptoms).  The broader medical community still seems very much behind the times with autoimmune diseases.  I'd say the burden for educating them and the broader public has to begin with us. If not us, who?