Reasonably Well: Sjögren's and Cognitive Function

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Everyone should read Julia from Reasonably Well’s excellent post entitled Tufts Study: Despite Burden Sjögren’s Syndrome May Not Impede Function that discussed new research on Sjögren’s Syndrome and cognitive difficulties.   You can read the whole extremely informative post here.  I’m going to comment on some of my favorite parts below and add some of my own reactions.

The Tufts Study concludes that Sjogren’s patients despite their perception “appear to function at a level comparable to their healthier peers.”  This is obviously good news, but Julia addressed some of the potential flaws with the study and raises research questions for the future.

Starting with the issue of fatigue, Julia writes:

I noticed that the assessment of fatigue…was not located in the physical section but rather in the Mental/Emotional locale.  There were no physician evaluations of joint pain, pure neurological problems (as opposed to neuropsychiatric), pulmonary issues, renal problems….to name just a few well-documented extra glandular manifestations of Sjögren’s.

She goes on to say (I love this part).

Since fatigue is one of my most disabling symptoms of Sjs and I'm a bit touchy about labeling fatigue as an all in your head symptom, I found it interesting that elsewhere in the discussion section of this study, fatigue is included under the description of "neuropsychiatric problems".

Well, I must say I’m touchy about this too.  And isn’t their bias in the research if fatigue is classified as neuropsychiatric from the beginning?

And I have had a similar experience to Julia where as she writes that for her tired=stupid.  What a perfect equation. I completely relate.  When I’m having complete autoimmune exhaustion, I also have what I would call brain-fog. 

This idea also got me thinking.  Do studies need to include both disease activity and cognitive function? Would it be worth exploring whether “flares” have both cognitive and physical impacts?  And Julia also brings up another super super important point about study design:

This was not a longitudinal study. Study authors would have no data to support their discussion of length of disease related issues.

In another small controlled study on the subject conducted by doctors and psychologists, including the Director of the Penn Sjögren’s Center, Dr. Frederick Vivino, found significantly lower IQ scores and lower verbal memory scores for the Sjögren’s group (click here for the study). No statistically significant differences were found on concentration and processing speed, visual memory, or executive function.  Interestingly Tufts and the Penn Studies used different measures of cognitive function.  While the Penn study also clearly had its limitations with only 17 participants and it did not occur over a period of time, the authors tend to stay away from broad generalizations, and suggest more research including “correlating neuropsychological findings with neuroimaging.”

On the other hand, the abstract of the Study out of Tufts University concludes that "Sjögren's patients perceive deteriorated physical function over time, but they achieve a level of functioning comparable to controls despite the burden of their illness" (click here for the abstract). In my opinion, that language is a bit misleading. Making physical conclusions about a cognitive study makes little sense. 

Perhaps, if a rheumatologist who regularly evaluates patients and the glandular and extraglandular manifestations Sjögren's had been involved in the study, he/she would have taken other issues into account.

While it is always good to see new research on Sjögren’s, it’s also important that the authors identify the scope and limits of their research. 

Thanks Julia for your excellent post and bringing it to the attention of all us Sjöggies.

What did you think of the Tufts Study?  If you could suggest new research on Sjögren's, what would you focus on?

"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.

Tales from a Weekend Getaway

Last weekend, my husband and I decided that instead of taking one of our Sunday drives (yes, I think that term might be aging us more than 20 years) that we wanted to get out of town.  It's a beautiful time of year with the leaves changing from green into bright yellows, oranges, and reds. And while I try to forget--winter is just around the corner. 

Our plan to try to get away for the weekend initially didn't pan out as I had hoped.  I was too tired on Friday to leave after packing and making food for the weekend. It's kind of funny that getting ready for our short weekend away actually left me too tired to head off on our trip.  Alas, we had to adjust our plans and instead pack up and go the next morning.

Saturday morning also ended up being a bit of a challenge.  We left and came back to our apartment twice before actually hitting the road "for real". The first time I couldn't remember if I had locked the door.  The second time we were already twenty minutes away and I realized that I had forgotten all the food that I had made for the weekend.  I was just too out of it that morning.  Can you say brain-fog?

But after a rocky start, the weekend turned out quite well indeed. My husband drove and I slept in between stops so I would have energy for the activities ahead.  We began with apple picking at a beautiful orchard.  What looks like markings are actually clay to protect the apples from insects since they are organic and no pesticides were used. 

Our next stop was a small farm where they make cheese from their own cows, goats, and sheep.  I bought a really delicious cheddar cheese that I could keep in my cooler.  That's one benefit of traveling with food allergies--rarely do I go anywhere without a cooler and ice packs.

There were also lots of animals to see on the farm including this adorable baby calf timidly walking about.

The following day, we still had time for a couple activities. We took a leisurely walk with majestic mountain and water views and plenty of benches for resting.  

Our final stop was a town with a cider festival and to our surprise, it had an extensive display of classic cars all along Main Street.  There were even cars over 90 years old from the 1920s.  Pretty Cool!! 

I'd love to take a ride in this one

Then it was time to return home. After a bumpy start, the weekend turned out to be tons of fun.  My husband and I dealt with the accommodations and last minute adjustments that come with traveling with autoimmune disease and food allergies.  Sometimes I think we might actually be getting the hang of this...well sort of...or at least until the next major bump in the road. 

Update: Vitamin D Yo-Yo

A little over a month ago I wrote about the drop in my Vitamin D levels and wanted to update my wonderful readers on recent developments.  The basic story is that my doctor had suggested that I try reducing my D dose from 50,000 IU a week prescription to the daily recommended dose. This ended up being a mistake. 

When I reminded my doctor to recheck my levels, they were low.  (Yes, I had to remind my doctor to check.)  As a result, I had to go right back on to the 50,000 weekly dose.  It was a game of Vitamin D Yo-Yo.

The critical question is whether I'm feeling any different now that I have been on the higher dose for about six weeks?  The answer, I am happy to report, is YES.  I'm not sure I realized how badly I had been feeling over the last few months, particularly how severe my fatigue had been.  From comments on my blog and Facebook, I know that others with autoimmune disease have had this experience too.

Even though it seems odd from something so simple, I clearly have more energy and stamina.  I've actually surprised myself in being able to partake in a few activities that were a bit more than I thought that I could do.  I went hiking.  Granted it was a short hike, listed as easy and perfect for children, but that's just about the right speed for me.  There was still the going down and then climbing up from the waterfall, which were a challenge.  Yes, did I mention that I got to see a beautiful waterfall (pictured below).  That was a bit of magic for me.

Since re-upping Vitamin D, some of my autoimmune symptoms seem to be slightly more tame as well.  The new neuropathy that had developed in my feet a few months ago is less of a problem as is my joint pain and swelling.   While I realize some of this could be chance and that I am just having a lull in disease activity, the fact that I am able to spend less time in bed and more time with family and friends is enough evidence for me that keeping my Vitamin D levels within normal range is important for how I feel.  It would be hard for me to believe that the timing is purely coincidental and taking a prescription Vitamin is much easier to swallow than some of my other medications.

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.

Exhaustion Day

Today, I am exhausted.  It feels like I was in a fight yesterday and got beat badly as every muscle aches.  My shoulders feel heavy and every movement takes energy that I don’t have. I am still always surprised by these days. They seem unreal to me -- a once super hyper energetic gal who did not know what to do with her energy. It is also hard to fathom how quickly my energy can change and super exhaustion can takeover.  Yesterday, I was able to make it to the grocery store in the morning and then in the evening walk a few blocks and grab dinner with my husband and walk back home.  I was quite happy even excited that we were able to do something “normal” and spontaneous like we used to before I got sick. But today is a completely different ball game. I don’t have the energy to leave our house and lying down is the only position that is comfortable. 

When these awful days, coincide with football – I am thankful.  TGFF (Thank Goodness for Football). From growing up, my dad was always a huge sports fan and he passed the gene along to me.  We watched lots of basketball and baseball and went to a fair number of games.  But football was never a particular favorite, until I met my husband who is an avid Giants fan.  Now, I would rank it as my favorite professional sport to watch on TV and it is tied with March Madness.  So why is football therapeutic on these exhaustion days?

Even though I am unable to move, I can root for these aggressive guys doing everything to win.  The games are exciting with Hail Mary passes, interceptions, and turnovers and the winner of the game can often be determined with 60 seconds left in the game. It’s fun to be able to talk to my husband when he comes back from a game about something he is so excited about.  Take the Saints versus 49ers playoff game (probably one of the most amazing games of the season), where both teams scored touchdowns within the last two minutes of the game. It didn’t end until Alex Smith put San Francisco on top with 9 seconds left.   I got sucked into the excitement of the game and felt a part of something both communal and energetic.  A welcome reprieve from feeling bad about my exhaustion, even though I never had to leave the couch. 

So it is with great anticipation that I get ready to watch the Giants (my favorite team) play the Patriots in this Sunday’s Super Bowl in a rematch of Super Bowl XLII, but once the season is over I will surely miss how football fills some of my exhaustion days with vicarious energy. 




















*Photo from Google Images*