Sunday, June 30, 2013

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?  

Tuesday, June 25, 2013

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 
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?  

Wednesday, June 19, 2013

Preserving Energy With Cooking: Frozen Vegetable Magic

From reading the title, you might think this post is about ecologically sound ways to cook.  But it is actually about preserving my energy, something at which those of us with chronic illness and autoimmune disease need to become master strategists. 

I like to buy fresh vegetables when possible from the farmer's market or the super market and have one with dinner every night.  Depending on what's in season, I am big fan of spinach, cauliflower, broccoli, brussels sprouts and have recently added swiss chard my regimen.  But there are certainly many evenings when the process of washing, chopping, and cooking vegetables is too much for me.  My fingers can be stiff and tired or I might just have general fatigue.  

On those evenings, I tend to scour my freezer for frozen vegetables that can be easily microwaved without much effort on my part.  Yesterday was one of those evenings.  The problem is that I have grown tired of what can often be soggy microwavable vegetables.  On a whim, I decided to try an experiment and "doctor" a bag of frozen cauliflower to see if I could make it a bit tastier.  I came up with Microwaved Cauliflower Sauté. Pictured below:

Cauliflower Sauté

*ingredients in bold*

1) Dig through your freezer for a bag of frozen cauliflower  (Hearty vegetables like broccoli or brussels sprouts might be a good substitute)

2) Microwave for half the time suggested so the vegetables are defrosted, but still cold.

3) Heat olive oil in a sauté pan on medium heat.

3) Add the cauliflower and a pinch of sea salt.

4) Saute for five minutes turning the cauliflower so parts turn brown, but are not over done.

5) Remove form the pan and serve

I didn't know what to expect, but it worked!  The cauliflower was definitely delicious.  Crisp and not soggy or watery.  I could have eaten a couple more helpings if I didn't have to share with my husband.  I'm not sure he could actually tell the difference between last night's experiment and the fresh variety.  I didn't say a word to him (Shhhh) about using frozen cauliflower because I think a blind taste test between the two might be in order.  This dish is also more economical than buying the fresh variety of organic cauliflower so it is a good way to save a few dollars every now and then.  The best part is that the whole process of cooking only took 8 minutes without any chopping or pain, and clean-up was minimal.

What tricks and adaptations have you made in the kitchen to accommodate living with autoimmune disease?

Thursday, June 13, 2013

My Story of Cranial Neuropathies and Sjogren’s

I have put off writing this blog post a number of times.  To be honest, it's not something that I like to think about, a luxury I sometimes have when my symptoms are not particularly severe. But it is a subject too important for me to continue to put off.  So here goes.

I am one of the unlucky Sjogren’s patients who suffers from significant neuropathies; in my case multiple cranial neuropathies are the particular nemeses. In fact, for me, cranial neuropathies are perhaps the most difficult part of contending with Sjogren's syndrome. They can be exceedingly painful and are one the reasons SS has been so debilitating for me over the last several years.

While I know I am not alone in having these cranial nerve issues, I have also Iearned that, in some respects, I am the exception to the rule. For starters, depending on the study, approximately 30 percent of Sjogren's patients have neurological involvements of some kind. That broad group includes all neuropathies that impact the central, peripheral, and autonomic nervous systems. Multiple cranial neuropathies in particular are a relatively uncommon subset. One estimate places them at just 5% percent of those with neuropathies, which would mean less than 2% of the overall SS population.  (I’m sure others will have seen other numbers, but the point is multiple cranial neuropathies are considered fairly rare with Sjogren’s.)  

However, since at least I know I am not the only one out there with Sjogren's, Lupus, or other autoimmune diseases contending with cranial neuropathies, I thought I would start with some of the basics I have learned over the last few years.  For starters, there are actually 12 cranial nerves. Making things more complicated, some belong to the peripheral nervous system (PNS) and others belong to the central nervous system (CNS). The short version is that these are many of the nerves that are involved in your face, head, eye, and ear. (If you’re interested, greater details on the specific functions of the twelve cranial nerves can be found here.)

With Sjogren’s (and other autoimmune diseases such as MS) the 5th cranial nerve or the trigeminal nerve is one of the most commonly involved in the disease process.  This nerve has three main branches V1, V2, and V3 impacting the upper, middle, and lower sections of the face as shown below:

Dermatone of Trigeminal Nerve
By Madhero88 via Wikimedia Commons

Patients with trigeminal nerve involvement or trigeminal neuralgia often have severe pain running down the side of their face, lack of feeling, sensations of numbness or general abnormal feeling in their face.  I realize that pain and numbness may sound contradictory, but it will make sense to anyone who has experienced it. Symptoms can be made worse by simple everyday activities that most people don't think about twice such as eating, being outside in the cold or wind, or even just touching the face. Unfortunately, trigeminal neuralgia is an extremely painful condition and can be difficult to control. Doctors recognize it as a condition of its own and often believe it to be untreatable; a terrible thing to hear for those of us who have it.

For me, the trigeminal nerve was the first of my cranial nerves to be affected by the disease.   It started with a change in sensation on the right side of my face such that touching it became uncomfortable. It was as if my face had gone numb and progressively painful at the same time.  Not a good feeling at all.

But that was just the start for me. After the trigeminal nerve, I had other cranial nerves become involved too.  I had problems with the 7th cranial nerve, which impacted my facial movement and caused hemi-facial spasms.  As a result of its involvement, at times I was unable to move my face or open my eye.  My 8th cranial nerve, which is responsible for hearing and balance, also joined the dysfunctional nerve party.  I experienced (and at times still do have) extreme ear pain, sensitivity to any sound and vibration, and balance issues.  I was even unable to be in a car or train because the vibrations and bumps of the road caused so much pain.  I was in constant unremitting pain and unable to do basic everyday tasks.  It really left me at my wits end… I could go on, but I am sure you get the idea that my immune system had mounted a full-fledged attack on my cranial nerves.

Now, back to the autoimmune aspect of it, which I hope may help some other patients. All of the nerve/pain issues described occurred before any of the more twenty doctors that I saw during this time diagnosed me with autoimmune disease.  If anything, the pain threw them off. I was told I had a pain syndrome and doctors put me on pain meds. All they did was make me slow-witted and, while they masked the pain at times, they did not make it go away and I kept getting worse. The doctor's response?  You must have a "bad pain syndrome. Take more drugs." This was from some of the most prominent medical centers in the country. 

I know that I am probably not alone in the autoimmune disease community of having had something like this happen.  What I have learned since then is that many doctors, even rheumatologists, are not aware of the possible neurological complications of Sjogren's Syndrome.  And the big and important question of course is why is this the case?  So that is what I’ll try to tackle in a bit more detail in an upcoming post.  Stay tuned.

I realize it's a very tough subject but I would be very interested to hear if any of you have neuropathies related to autoimmune disease. If so, how have they affected your life?


Monday, June 10, 2013

Sometimes You Need (Gluten & Corn Free) Pancakes

This past weekend I was madly craving pancakes.  This sort of thing usually happens when I am taking post infusion steroids and my desire for carbohydrates goes up exponentially.  All I could think about  eating are those delicious butter and maple syrup topped treats.  Healthy, maybe not, but splurging is allowed sometimes.

While I certainly wouldn't mind heading out to a local diner and enjoying pancakes without any cooking involved, this is not feasible with my corn allergy and gluten sensitivity.  If I want pancakes, I have to make them myself and find, or at least adapt, a recipe that fits my allergy specifications.  Luckily, I found a simple recipe on for rice based pancakes that calls for few ingredients all of which were in my pantry.   For me, less ingredients is my motto.  Less ingredients = less likely to have an allergic reaction and less room to make a catastrophic cooking mistake.   

The pancakes were super easy to make and tasted good too.  My father, who was in town visiting and also cannot have gluten, joined me in eating them.  He hadn't had pancakes for quite some time and definitely enjoyed this rare treat.  My husband who is lucky not to have any allergy restrictions also had some.  I figure it is always a good sign when someone who eats gluten has two helpings of a dish that is gluten-free.  It means it must pass the wheat-eaters taste test.

I topped my pancakes with plenty of butter and maple syrup to satisfy my increased appetite from steroids.  Maybe next time I'll have to add my corn-free and gluten-free chocolate chips to the recipe!

Rice Flour Pancakes. 
Adapted from

  • 3 eggs
  • 1/2 cup milk
  • 1 tablespoon vegetable oil 
  • 1/2 teaspoon salt
  • 1 cup rice flour
  • 1/2 Teaspoon Baking Soda * (Added for additional fluffiness)


1. Beat the eggs in a mixing bowl with a whisk or hand mixer.  Add the milk, vegetable oil, and salt into the same bowl. Add and stir in the rice flour until no lumps remain.

2. Cover the bowl and let stand at room temperature for 1 hour or in the refrigerator overnight.

3. Heat a lightly-oiled/buttered griddle or fry-pan over medium-high heat. Drop batter by large spoonfuls onto the griddle.  Add fruit or chocolate chips to pancake batter if desired.  Cook until bubbles form and the edges are dry. Flip and cook until browned on the other side.