Friday, December 28, 2012

The Holiday Hubbub and Autoimmune Disease

I just heard on the radio today that the average American goes out 16 nights a year in December, by far the most social month of  the year. (I have no idea if this is exactly accurate, but it does feel to me like my friends and husband have events almost every night.) When I heard that I was exhausted. For someone like me that's impossible. I managed to make it to one friend's birthday and one event for my husband for brief appearances. I thought that was a major victory. For me, it was.

Not that I or anyone should have to go out 16 times in a month, but just hearing it reminded me that having autoimmune disease makes me not average in many ways. I am proud that I made it to 2 non-family events this month, no matter what others do.

Do I wish that I could have made it to more celebrations and seen more family and friends.

Of course.

But if I had done more than I knew that I could physically handle, it might have had an adverse effect on my health.  There was lots of careful planning involved to get to these parties feeling well or well enough.  In my pre-autoimmune days, I used get ready at the very last minute.  Rushing to get dressed and literally running out the door in a pair of 3 inch heels (my heels have been replaced by flats). Now my routine is the opposite.

I know what I will wear in advance so I don't waste energy trying on outfits at the last minute. I plan out everything I need to do  before I leave  -- taking medicine, eating early, packing my purse and make a mental or written schedule with slotted time to rest.  Even if I organize everything perfectly, there is still the possibility that my autoimmune disease will keep me home.  I am not sure my very type A personality will ever completely come to terms with that fact.

But this season, I made it to the 2 events that were the most important to me and my husband.  Two more events than I did last year when my health was very unstable and that is progress!

Tuesday, December 18, 2012

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

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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.

Friday, December 7, 2012

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

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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.