Wow. It's amazing -- I didn't know much about Sjogren's Syndrome. Look at some of the facts:
-- Just as in your friend's experience, it takes an average of 6.5 to 7 years to be properly diagnosed with Sjogren's because the disease mimics so many other auto-immune disorders.
-- More than 4,000,000 Americans have Sjogren's.
-- 9 out of 10 are women.
For those unfamiliar with Sjogren's, it is an autoimmune disorder where the body's white blood cells attack the glands that produce moisture. This causes dry eyes and dry mouth, but it also can harm the kidneys, the gastrointestinal system, the blood vessels, the lungs, the liver, the pancreas, and the central nervous system. Chronic pain, fatigue and a higher risk of developing lymphoma are also associated with it.
Do we know if the friend has Primary or Secondary Sjogren's?
Here's a diagram that shows how Sjogren's affects systems throughout the body:
There is a National Patient Conference for Sjogren's Syndrome coming up at the end of next week in Arlington, Virginia for patients, family members and health care professionals. One of the topics is that of managing chronic pain. Perhaps after the conference, some of the talks, topics and experts will be online. I'll keep an eye on it:
IVIG stands for IntraVenous ImmunoGlobulin treatment. From the research I found, it appears that IVIG is used when a patient has painful sensory neuropathy -- in other words, pain that affects the sensory nerves throughout the body. Nerve pain is some of the most unforgiving pain there is, so any treatment that relieves this sort of pain is vital.
This is one Japanese study, which appears to have been published just this month in the Journal of the Neurological Sciences:
http://www.ncbi.nlm.nih.gov/pubmed/19168191
It evaluated IVIg treatment in these patients and found that 5 of 5 patients received significant pain relief (73%) after their treatments. It recommended further blind studies be done. So clearly, this treatment is in a somewhat early stage of acceptance, and I imagine that's why your friend is having to struggle with the insurance company at every turn over the cost. But clearly, there's been success with the treatment.
This page has links to many research studies about Sjogren's (including the one I wrote about above):
In terms of diet, I found some threads where Sjogren's sufferers were getting relief from following a diet similar to those for people with Celiac disease -- but rather than just avoiding gluten, they eat no grains at all. No wheat, corn, rice. Some felt significant relief within about two weeks of eliminating all grains. (They also ate fruit and vegetables, drank a lot of water, and eliminated smoking and alcohol and caffeine). Here's one of the best threads where Sjogren's patients are contributing their experiences with diet and supplements:
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Wow. It's amazing -- I didn't know much about Sjogren's Syndrome. Look at some of the facts:
-- Just as in your friend's experience, it takes an average of 6.5 to 7 years to be properly diagnosed with Sjogren's because the disease mimics so many other auto-immune disorders.
-- More than 4,000,000 Americans have Sjogren's.
-- 9 out of 10 are women.
For those unfamiliar with Sjogren's, it is an autoimmune disorder where the body's white blood cells attack the glands that produce moisture. This causes dry eyes and dry mouth, but it also can harm the kidneys, the gastrointestinal system, the blood vessels, the lungs, the liver, the pancreas, and the central nervous system. Chronic pain, fatigue and a higher risk of developing lymphoma are also associated with it.
Do we know if the friend has Primary or Secondary Sjogren's?
Here's a diagram that shows how Sjogren's affects systems throughout the body:
http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms
There is a National Patient Conference for Sjogren's Syndrome coming up at the end of next week in Arlington, Virginia for patients, family members and health care professionals. One of the topics is that of managing chronic pain. Perhaps after the conference, some of the talks, topics and experts will be online. I'll keep an eye on it:
http://www.sjogrens.org/home/about-the-foundation/news-and-events/150?task=view
IVIG stands for IntraVenous ImmunoGlobulin treatment. From the research I found, it appears that IVIG is used when a patient has painful sensory neuropathy -- in other words, pain that affects the sensory nerves throughout the body. Nerve pain is some of the most unforgiving pain there is, so any treatment that relieves this sort of pain is vital.
This is one Japanese study, which appears to have been published just this month in the Journal of the Neurological Sciences:
http://www.ncbi.nlm.nih.gov/pubmed/19168191
It evaluated IVIg treatment in these patients and found that 5 of 5 patients received significant pain relief (73%) after their treatments. It recommended further blind studies be done. So clearly, this treatment is in a somewhat early stage of acceptance, and I imagine that's why your friend is having to struggle with the insurance company at every turn over the cost. But clearly, there's been success with the treatment.
This page has links to many research studies about Sjogren's (including the one I wrote about above):
http://sclero.org/medical/symptoms/sjogrens/symptoms.html
In terms of diet, I found some threads where Sjogren's sufferers were getting relief from following a diet similar to those for people with Celiac disease -- but rather than just avoiding gluten, they eat no grains at all. No wheat, corn, rice. Some felt significant relief within about two weeks of eliminating all grains. (They also ate fruit and vegetables, drank a lot of water, and eliminated smoking and alcohol and caffeine). Here's one of the best threads where Sjogren's patients are contributing their experiences with diet and supplements:
http://www.city-data.com/forum/diet-weight-loss/357803-diet-sjogrens-syndrome.html
April 9, 2009 - 10:23amThis Comment
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