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Anonymous
For comprehensive accurate current information please see www.sjogrens.netfirms.com
There are about 4 million in the usa with Sjogren's Syndrome. It is the second most common rheumatic disorder. It takes an average of eight years to get a diagnosis. There is no cure. There are many treatments.
Each person with Sjogren's can have completely different symptoms and therefore require different treatment. Intravenous Immune Globulin is not first line treatment for Sjogren's Syndrome. It is used for some related conditions. While there is a 44 fold increase in incidence of non Hodgkin's Lymphoma, it is still not common, but something that is watched for. The best way to think about it would be something like if 1 in ten million drivers is likely to get into an accident your chance is 44 in ten million.(not 100% accurate, but gives the idea).
None of the treatments offer instantaneous results.
As for diet, those with Sjogren's are lacking an enzyme in the saliva that starts the digestion of all carbohydrates. Most find they are better off avoiding these foods , or limiting them. Most have great difficulty with fruits for this reason.
Since many have gluten sensitivity producing gi results, they also tend to avoid this. And the degree of inflammation in the body at any particular time effects what foods can be tolerated.
Many also have celiac or pseudo celiac. This produces additional food considerations, as does the many food sensitivities and "allergies" common in those with Sjogren's.
Many of these sensitivities decrease with successful treatment of the disease.
Because of the mouth inflammation , it is dry, which further confounds eating, because it is difficult to swallow anything dry due to choking. But the type and amount of moisture needed to comfortably swallow is very individualized.
Since the body is in an inflamed state, it is in effect dehydrated, so anything causing further dehydration should be avoided. This includes any beverages with caffeine, ie coffee, cola , etc. It also means avoiding sunbathing and making sure you consomme the amount of ounces of water that you doctor recommends for you. For non Sjogren's people the usual recommendation is a minimum of 64 ounces if not contraindicated, which is why only your doctor or nurse practitioner can tell you how much you should actually be drinking.
As for the pain symptoms, they generally improve significantly with control of the underlying disease by disease modifying antirheumatic drugs.
Some physicians start treatment with Plaquenil(Hydroxychloroquin), it is the least toxic of the recommended treatments. It takes weeks to months or sometimes years to get the full benefit of this medication. In my own case it took 13 months to notice any improvement and i got improvement year over year for about 4 years.
In the past some doctors only recommended over the counter anti inflammatories, however, this is no longer the case. Early and continuous treatment with DMARDs can have a ositive imact on the quality of life with Sjogren's.
A large percentage of those with Sjogren's are dealing with pain from Fibromyalgia, the pain management for this is very different from pain management due to other causes.
Hypothyroidism can also produce muscle pain and Arthritis can produce joint pain. Both of these are rather common in those with Sjogren's.
There are alternative and complementary recommendations for treatment . Some of these are helpful, some harmful and some neutral. Some are contraindicated by the disease or associated conditions or medications. Currently I am receiving a great deal of help from Acupuncture. I would suggest it is best to discuss this with the rheumatologist first. Also to make sure the person is national certified in acupuncture as there are MD's, and chiropractors out there, with very limited to no education in acupuncture who can legally administer it, but not necessarily to your benefit.
Additionally the person with Sjogren's should notify realatives as autoimmune conditions tend to run in families. So one family member can have Sjogren's , another Diabetes, and another Hashimoto's Thyroid(30 percent of those with Sjogren's have thyroid disease).
There are many links on www.sjogrens.netfirms.com for information on specific aspects as well as access to a variety of organizations with specialists who have knowledge and interest in dealing with people with Sjogren's Syndrome.
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For comprehensive accurate current information please see www.sjogrens.netfirms.com
There are about 4 million in the usa with Sjogren's Syndrome. It is the second most common rheumatic disorder. It takes an average of eight years to get a diagnosis. There is no cure. There are many treatments.
Each person with Sjogren's can have completely different symptoms and therefore require different treatment. Intravenous Immune Globulin is not first line treatment for Sjogren's Syndrome. It is used for some related conditions. While there is a 44 fold increase in incidence of non Hodgkin's Lymphoma, it is still not common, but something that is watched for. The best way to think about it would be something like if 1 in ten million drivers is likely to get into an accident your chance is 44 in ten million.(not 100% accurate, but gives the idea).
None of the treatments offer instantaneous results.
As for diet, those with Sjogren's are lacking an enzyme in the saliva that starts the digestion of all carbohydrates. Most find they are better off avoiding these foods , or limiting them. Most have great difficulty with fruits for this reason.
Since many have gluten sensitivity producing gi results, they also tend to avoid this. And the degree of inflammation in the body at any particular time effects what foods can be tolerated.
Many also have celiac or pseudo celiac. This produces additional food considerations, as does the many food sensitivities and "allergies" common in those with Sjogren's.
Many of these sensitivities decrease with successful treatment of the disease.
Because of the mouth inflammation , it is dry, which further confounds eating, because it is difficult to swallow anything dry due to choking. But the type and amount of moisture needed to comfortably swallow is very individualized.
Since the body is in an inflamed state, it is in effect dehydrated, so anything causing further dehydration should be avoided. This includes any beverages with caffeine, ie coffee, cola , etc. It also means avoiding sunbathing and making sure you consomme the amount of ounces of water that you doctor recommends for you. For non Sjogren's people the usual recommendation is a minimum of 64 ounces if not contraindicated, which is why only your doctor or nurse practitioner can tell you how much you should actually be drinking.
As for the pain symptoms, they generally improve significantly with control of the underlying disease by disease modifying antirheumatic drugs.
Some physicians start treatment with Plaquenil(Hydroxychloroquin), it is the least toxic of the recommended treatments. It takes weeks to months or sometimes years to get the full benefit of this medication. In my own case it took 13 months to notice any improvement and i got improvement year over year for about 4 years.
In the past some doctors only recommended over the counter anti inflammatories, however, this is no longer the case. Early and continuous treatment with DMARDs can have a ositive imact on the quality of life with Sjogren's.
A large percentage of those with Sjogren's are dealing with pain from Fibromyalgia, the pain management for this is very different from pain management due to other causes.
Hypothyroidism can also produce muscle pain and Arthritis can produce joint pain. Both of these are rather common in those with Sjogren's.
There are alternative and complementary recommendations for treatment . Some of these are helpful, some harmful and some neutral. Some are contraindicated by the disease or associated conditions or medications. Currently I am receiving a great deal of help from Acupuncture. I would suggest it is best to discuss this with the rheumatologist first. Also to make sure the person is national certified in acupuncture as there are MD's, and chiropractors out there, with very limited to no education in acupuncture who can legally administer it, but not necessarily to your benefit.
Additionally the person with Sjogren's should notify realatives as autoimmune conditions tend to run in families. So one family member can have Sjogren's , another Diabetes, and another Hashimoto's Thyroid(30 percent of those with Sjogren's have thyroid disease).
There are many links on www.sjogrens.netfirms.com for information on specific aspects as well as access to a variety of organizations with specialists who have knowledge and interest in dealing with people with Sjogren's Syndrome.
April 12, 2009 - 1:13pmThis Comment
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