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

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?ta...

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-syn...

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.

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.

I am a nurse
I have been out of work for 7 years due to pain--so bad i cannot get out of bed sometimes.
Bad headaches/swollen joints with pain/swollen face(where your parotid glands are)-dry eyes dry mouth etc....

I have multiple diagnosis about 10 I think--no one is really sure,I have had every test done known to mankind-even went to the specialists and hospitals in NYC and Boston.

I have been told I have

I have Rheumatiod Arthritis

fibromyalgia

sjogrens

osteoporosis

lupus

ankylosing spondylitis

vitamin deficiencies

Lyme disease

I could go on and on

Pain????? yes and I went to 4 different pain clinics trying to find something to help.

That is hard to do when you are in crazy pain.

I took every NON narcotic known to mankind and will still try every new one that comes out.

Once I found the right pain clinic

I was given MS Contin--that didnt work

Vicodin didnt work

Then one day Kadian SR (a form of morphine)

since then I am up and walking my pain is more under control than it has ever been.
I thank God every day for this medicine.

My blood work is always a mess but never anything definative

although both my anti bodies for sjogrens were positive/which means I have it.

sed rate is high/arthritis

tests have shown osteo

Being a nurse I study all I can,,,,,,and I am hearing things in research about

''maybe it is viral''

''that all autoimmune diseases are really one in the same combined with different parts of that illness showing up differently on each individual.""

I had to learn to stop worrying about ''what it is''

and just try and keep the PAIN under control.

Hot packs on my face when the glands swell up

eye drops

optician every 6 months

special tube of oint to make saliva in my mouth

lotion to my skin

Dentists for cleaning every 3-6 months

Make sure your friend has been tested for Celiac antibodies-
and they don't do them unless you ask for them------
this disease has the same symptoms
and if you are positive
you go on a gluten free diet and usually that takes care of it.

My docs said to try a Gluten free diet even though my tests were negative just to see if it worked.It didn't
But everyone should try it.

The only medicine I have ever been given is plaqunel--which I had a reaction to and lost some vision from permanently.

That is another issue--never in my life have I been allergic to anything--now everything is an issue--sjogrens brings with it many allergic reactions,

God only knows what it is doing to the inside of my body? It affect major organs kidney/heart/lungs.

I was healthy all my life until this mess-
I turned 50 this year and had 3 heart attacks in a row
followed by emergency Cardiac Quad Bypass.....go figure???
no signs of anykind.

After being disabled with pain etc---I started to train myself for meditation
started doing yoga
started counselling--just to deal with pain and disability

You have to be good to yourself and learn ways to appreciate small things in life

This disease changes you

You have to change yourself in a good way to survive it all

sorry this is so long I just know what it is like to be out there and no one can hear you!!!...........Lynn

Lynn, thank you so very much for writing.

I am very inspired by the fact that despite your journey of the last seven years, you have found a pain medicine that is working for you and you are doing yoga and counseling. When you said this:

"This disease changes you, you have to change yourself in a good way to survive it all,"

it tells me just how much strength you have.

Just wondering, I know you said that the gluten-free diet did not bring you relief, but did you ever try going without all grains?

Lynn
Am glad you found some help.
Your statement regarding the positive anti SSA and SSb is incorrect. A positive result does not mean that it can only be Sjogren's, nor does a negative result mean that it is not Sjogren's.

And for some reason that I don't understand, there seems to be a high number of nurses with Sjogren's diagnosis. I don't think we are more likely but, I do think we fight longer and harder to find the cause of the myriad of illnesses and symptoms that are part of this syndrome. Most of us, myself included, have a long list of documented diseases. Mine is a full page single spaced list of diagnosis.

I wish Lynn and the friend with the diagnosis the best, we must be our own advocates to address this.
Paula

Hello, I'm learning about Sjogren's. AGAIN lol. Little background....I was never sick growing up, athletic and very fit for years. Had odd little symptoms here and there, just enough to think - hmm, that's odd- then it would disappear. Started a family at 25, toxemia problems with both pregnancies, then became very very ill after my second child. Thyroiditis, allergies, asthma, fatigue, horrible brain fog, aches, pains, painful intercourse for a time, etc etc. Maintained exercise routines til 36 when I had to have a kidney removed due to a birth defect (left kidney malformed & dying in my right pelvis).

Anyway, a rheumatologist diagnosed me with fibromylagia & sjogren's. Put me on plaquenil in the autumn of 1999. Fall 1999 to Fall 2000 are very clear. I felt normal, had energy again, weight was falling off a pound every other week, pain was gone,sex was good again. Then things started slipping here and there.

I never went back or mentioned sjogren's again because I didn't understand it and no one told me to be concerned about it. So I went on my merry way. I stay busy so I have no time for doctor visits.

I had a surprise pregnancy at the end of 2005. Things went well, DR took me off thyroid medicine. Baby was born healthy. About 4-5 months later Jan/2007, I thought I was having panic attacks and DR said it was post partum depression. very high blood pressure, couldn't sleep, then exhaustion for weeks. Nothing worked. Long story short....it was thyroiditis again. I eventually started repeating the same process as in 1996. But this time I have very dry skin and my elbows and knees feel like they are becoming dislocated.

Superbowl Sunday, Feb 3, 2009, I had the flu. I was oddly sick about every 6 weeks since October 2007 and kept having a deep dry cough sounding like a seal. But this flu was extremely painful from the hips down. Even prescription painkillers didn't work (vicodin & darvacet). Then off and on kidney/flank pressure. I only have one kidney so of course I was concerned. I ended up in the hospital August 28, 2009. The pain was so painful all over, my kidney pressure was horrible, blood pressure all over the place (and my normal BP is 110/70 or 100/60). Worst of all, I felt like passing out and tried lying down only to have my heart race where I was having trouble breathing and became scared with pain & tightness in my chest.

March 3, 2009, misery took me to my old family physician. I paid out of pocket instead of using my HMO PCP. Bloodwork is indicative of Sjogren's again. HMO PCP won't refer me so I'm working with my old DR. (Great lady by the way.) I'm back on plaquenil now. First week, no side effects and hoping it will work like last time.

In retrospect, I feel I may need a maintenance dose after I settle things down. I'm 42.

I don't know of anything to relieve pain. Would suggest a massage therapist and soaking in a tub along with a sleep aid. Rest has done me more good. Even if it is just 4 hours......but its 4 straight hours of steady sleep. Moving around, walk.

as for diet.....I can only suggest eating the way your mother made you eat when you were little lol. Fresh fresh fresh. eggs, toast, bacon, fruit, yogurt......real meat, not processed, salads, milk.......lately studies have shown blueberries to be a wonder fruit. i do remember one recent summer being very happy and healthy and ironically was eating blueberries all summer because my mother didn't want to waste them. So I bought a 4 lb bag of frozen berries. Great half frozen on yogurt in hot weather.

This is my experience, sorry I could not help your friend in such great pain. You may want to enquire about a hyperbaric chamber. Maybe spinal blocks or cortizone shots. Morphine? They gave me morphine in the hospital for fear of a heart attack since enzymes showed up in the bloodwork. Took all my pain away.

Anon, thank you so much for writing. Your journey is interesting and I know you will help others who are reading this because you related it so carefully and in such good detail -- and that's what EmpowHer is all about. Here's wishing you the best of luck with the medicine; I hope you feel like your "normal me" again very soon!

I really enjoyed reading your comments--so much to learn and

to my fellow nurse--

you are right
a positive antibodies result can or cannot diagnose anything anymore.

Must really confuse everyone?

For every test I have had when the results come back wether they are

positive OR negative

the Doc reply is always

""well that doesn't mean anything it could be a false negative or a false positive.""
....it is almost comical--so really how do all these tests help?

They make $$$$$$=I would rather they put unto research.

When I went to Boston to Bringhams-the specialists told me I was positive for sjogrens secondary to antibody results and the eye tests and lip biopsy-all positive,'

Like most /the docs have assured me there is a secondary disease process as well--
you can take you pic from a long list of diagnosis.

I always tell people this is not a pissing contest to see who is worse etc...
for me it was when I STOPPED looking for what was wrong--
a title-
-a name-
-an explanation--
a million tests--
-a million meds--
-and focused on ME!!
That my life took on a more positive direction.

-how am I going to live with this?

Who will help me if I need it-

-I can't work anymore and I was tops in my career

I have lost most of my friends......

I just kindof stopped asking all those questions and became ''friends'' with my pain.

It is a HUGE part of my life.

It doesnt NEED a name anymore for me.

I just treat the symptoms.

I went to rehab once to see if they could help and I laughed because everything they were teaching me I had already figured out myself!

Probably like most of you! You learn how to do certain things differently.

Doesn't do to much to complain although we all need to have a session of crabbiness from time to time.

I DO NOT want to BECOME this disease.

Learn to live one day at a time--it is sooooo true-if you try to do more you fail.

You have to work hard at it.

Get rid of the negativity around you as much as you can.
Which is difficult--
I know--
mine was my best friend from childhood.

Don't laugh but I tell every one who can to get a dog......
My dog makes me exercise when I don't want to--comforts me--never talks back haha.....