Sjogrens….Putting the pieces together

When we think of a puzzle, most often we envision an entertaining activity.  The activity of pouring out a specific number of  graphics-applied cardboard shapes which, when put together correctly, will create the desired big picture.  Puzzles also exist in many areas of our everyday lives..such as serious mathematical or logistical problems, and yes.. particularly in medical research.  Such is the case for Sjogren’s Syndrome.

To solve a puzzle it is necessary to be able to recognize patterns and create a particular order.  Putting the puzzle of Sjogren’s together is a challenge for researchers, physicians and patients.  According to the Sjogren’s Syndrome Foundation the average time it takes to diagnose a patient with Sjogren’s is seven years.   For many of us, it is much longer than that.  Why is that?  It is because Sjogren’s is often undiagnosed or misdiagnosed.   The symptoms of Sjogren’s syndrome may mimic those of menopause, drug side effects, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome and multiple sclerosis.  Additionally, all symptoms are not always present at the same time…kind of like when my car is messing up, but by the time I get it to the repair shop, the symptoms have disappeared.

Like many Sjogren’s patients I am searching for answers.  Not only are we as a group relying on our physicians to fit the big puzzle pieces about Sjogren’s Syndrome together,  we are also trying to figure out our own individual puzzle pieces.  Since discovering the Sjogren’s Syndrome Forums for patients to communicate and share with each other, I have decided that self-advocacy and shared patient information is a core ingredient to solving the Sjogren’s Syndrome puzzle.  About five or so years ago, I was treated with a medication prescribed for Osteopenia/Osteoporosis that included bisphosphonates and had a disastrous effect on my body (and I would even argue had a severe impact on my current autoimmune problems..but that’s another soapbox). I decided to research the drug (after the fact), I came across a web site called: AskAPatient.com   The site lists various drugs from A to Z. Random people like you & me who do not know each other, simply complete a short survey about the specific drug we are/were prescribed,  length of time taken; and any side effects (either positive or negative).  While the sample may be small, it should not be dismissed as anecdotal.  Imagine my shock when I realized that over 1400 people had taken the drug I was on & the majority of them had previously or currently were experiencing horrible, temporary and lasting side effects from the drug (and other similar drugs in the same bisphosphonate family). I was first upset at myself for not finding the site before I took the drug, but even more upset that the drug (while it does have current FDA warnings) is still on the market. But equally as important are the implications of patient/advocacy sites  such as Ask A Patient and the Sjogren’s (and other) Forums.  In fact, an article published in the Archives of Internal Medicine (Vol. 169, No. 12, June 22, 2009) Patient and Physician Oriented Web Sites and Drug Surveillance indicates that these kind of patient oriented sites provide an opportunity to identify potential adverse effects early in a drug’s postmarket history.  I would argue that patient-sharing sites offer valuable insights and information to the Sjogren’s patient’s experience and symptomology, not only for the physician and researcher, but especially to the patient!  Information sharing..whether in a formal testing protocol or on an informal discussion forum may surely be the key to help solve the Sjogren’s Syndrome Puzzle.

About vitalsignspgh

Sandy Burkett is a Sjogren' Syndrome Patient; A Sjogren's Syndrome Foundation (Pittsburgh) Contact & Ambassador, and the Co-leader of the Pittsburgh Sjogren's Syndrome Support Group (aka Sjoggies in Pittsburgh SIP)
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2 Responses to Sjogrens….Putting the pieces together

  1. Karla says:

    I am new to your site and read this entry with great interest as I too was on a drug for osteopenia for several years and experienced temporary and possibly lasting side effects from taking bisphosphonates. I have often wondered if the drug I took could have had a direct link to my immune problems and my diagnosis of Sjögren’s because I now see that my issues all began at around the time I was having horrible side effects and as a result stopped taking the bisphosphonates. I am fairly new to the Sjögren’s world and have found yours and others sites so informative and educational to this debilitating syndrome. It has totally rocked my world and not in a good way. Thank you for the time you devote to this issue so that we can find help and comfort in hearing from others who are suffering.

    • It was so interesting to get your comment yesterday Karla. After attending the Sjogren’s Patient Conference, I sent an email to Dr. Frederick Vivino (one of the Conference Presenters) and asked him if he is aware of any cases of Bisphosphonate-induced Sjogren’s? He replied that he had not, and then I got your comment. I suspect that there are lots of people who have had the same experience we both have had, but have not connected all of the dots. I know that there are environmental triggers to Sjogren’s and I will swear that; Boniva was a huge contributing factor, if not the only trigger to an (at the time) unactive autoimmune disease. I would be interested in hearing more about your experience. Private message me at: sandy@vitalsignspgh.com

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