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Sjogren's Syndrome.... I need your help with treatment and Pain Management

By Expert HERWriter April 9, 2009 - 4:09am
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I was talking to a dear friend of mine yesterday and she was telling me about one of her best friends, who has been diagnosed with Sjogren's Syndrome.

Her friend has been to multiple doctors (25!) and was treated for MS for 6 years before they discovered she actually had Sjogren's Syndrome.

This poor woman needs your help.......If you have Sjogren's and can help answer some questions below, it would be so helpful to her and to everyone who's trying to advocate for her.

She is simply not able to get her pain under control. I don't know the whole story, but it's something about the doctors not wanting to give her pain medication??? She is clearly suffering and needs pain management.

These are the questions I was wondering about:

-What is typically prescribed for severe pain for Sjogren's patients?

-Is there a diet she can follow that will help her?

-Ever heard of IVIG?? It's a drug to treat Sjogren's.

-Anyone being infused with IVIG? She has to have infusions every two weeks and it costs $8,000. Per treatment.

-Any other drugs you or someone you know is taking for Sjogren's?

Ladies, this woman is one of us. This was a woman who was on top of the world. Then she got sick, couldn't work anymore and is now in a very serious situation, physically and mentally. She may have to move, give up her place and a city she's loved. And on top of all of that, she continues to battle with her insurance company every single day over her infusions.

Honestly, we all think this could never happen to us.... But guess what-- it does.

If you have any advice, tips or can share your own story about Sjogren's Syndrome, please feel free to post back to me. I know my girl friend would be most appreciative, since she's trying to advocate for her friend. There is nothing worse than having a dear friend who's sick. I know all too well as I lost my best friend to lung cancer. And trying to advocate for her was one of the toughest things I've ever done.

Any information you can offer will be greatly appreciated. It sounds like she's in desperate need to get her pain controlled and to try and keep her life from totally unraveling.

Big hugs,


Add a Comment63 Comments

This is great information. A friend of mine said that her dentist recommended she use a rinse called 'Oasis' to help with her dry mouth. Can't vouch for myself but she seems to like it. Any other ideas on how to deal with some of these symptoms. Thanks so much anon.

April 12, 2009 - 1:44pm
EmpowHER Guest

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 - 1:13pm

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:


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:


April 9, 2009 - 10:23am
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