July 23 - World Sjogren's Day

July 23 – World Sjogren’s Day

This is more of a public service announcement with a conspiracy twist at the end, then just a conspiracy discussion thread.

July 23 is World Sjogren’s Day. Sjogren’s is an AI disease. Some people call it a syndrome and others call it a disease. In our house, we call it a disease. 90% of people with Sjogren’s are women. The average age of onset is 48 although children can also have Sjogren’s. It is unclear what causes Sjogren’s; if it is environmental or inherited. Usually a virus or an infection ‘triggers’ the disease to advance or flair. Most people go six years with various symptoms, jumping from doctor to doctor, before a proper diagnosis is made. Most people have never heard of Sjogren’s and the doctors who should be screening for it usually don’t.

Symptoms of Sjogren’s include (but aren’t limited to) –

- Neurological problems such as concentration, memory loss, brain fog.
- Dry Nose, recurrent sinusitis, nose bleeds.
- Dry mouth, mouth sores, dental decay: Difficulty with chewing, speech.
- Dry skin, vasculitis, Raynaud’s phenomenon
- Stomach upset, gastroparesis, autoimmune pancreatitis
- Peripheral neuropathy (numb or burning legs and.or arms)
- Dry eyes, corneal ulcerations, and infections
- Difficulty swallowing, heartburn, reflux, esophagitis
- Recurrent bronchitis, pneumonia, interstitial lung disease
- Arthritis, muscle pain.
- Abnormal liver function, chronic active autoimmune hepatitis, cirrhosis
- Severe fatigue
- Hyper sensitivity to medications
- “asthma’ type wheezing and heart rhythm issues

Some people have just one or two symptoms and lead ‘normal’ lives. Others get nailed with many of the symptoms and have a very hard time functioning.

Blood tests, the Schirmer eye test, a lip biopsy of a salivary gland, and salivary scintigraphy are tests that are performed to check for Sjogren’s .

There is no cure. There are medications available that can help people with the symptoms. Not everyone can tolerate the medications. 60% of people with Sjogren’s are hyper drug sensitive and have a higher incidence of getting the ‘side effects’ then the rest of the population.

Sjogren’s is considered ‘not fatal’. However, the complications from Sjogren’s are. Pneumonia, liver failure, kidney failure and other internal organ involvement are very serious. The incidence of lymphomas are significantly higher in people with Sjogren’s. Also, the majority of people with one AI disease will eventually be diagnosed with others. Many people with Sjogren’s end up also having Thyroid problems such as Graves Disease or Lupus.

For the conspiracy angle to make this a ‘legitimate’ thread and not just a public service announcement I present some brief anecdotal evidence. In the many discussions Liz (FlyersFan) has had with other Sjogren’s patients over the past months she has discovered that many of them are wondering about a link between AI disease and vaccinations. The Sjogren’s patients who feel there may be a link have no proof, but in their hearts and souls many feel that there might be a link between vaccinations they received and their AI diseases. In particular, some are looking back at their 1970s Swine Flu vaccinations and are seeing that they, and others they know who received the shots, have AI diseases, whereas those they know who didn’t receive the shots now do not have AI diseases. For the record, Liz did NOT receive a Swine Flu shot in the 1970s, or this time around either. She has had all other vaccinations, including some unusual ones that the military gave her such as the plague.

As I said at the beginning, this is more of a public service announcement about World Sjogren’s Day with a bit of a conspiracy twist rather than a full blown conspiracy thread. I hope it makes people aware of Sjogren’s and that if they think they have some symptoms then they should get tested.

Today is World Sjogren's Day. Be aware of the symptoms. Be aware of how bad this disease really is. If you have any of the symptoms and feel that you might have this disease, get tested. Don't take 'no' for an answer from the doctor. Get tested.

Wow thanks for the information we just found out yesterday that my mother has Sjogren’s syndrome I had no idea about this disease thank you so much for posting this information

I have a lot of the symptoms and have been diagnosed as having fibromyalgia.

I also have gastritis which is thought to be from my meds.

But I always feel better on prednisone. Adn the gastritis will dissappear on the prednisone.

Does prednisone make sjogrnes patients feel better?

Originally posted by nixie_nox
Does prednisone make sjogrnes patients feel better?

It DEFINATELY helps Liz. Prednisone not only takes down the swelling of the joints and the salivary glands, but it is an antiimmune drug as well. Definately.

There is cross over with autoimmune diseases. A lot of people with Fibromyalgia have Sjogren's. A lot of people with Sjogren's end up with tyrioid diseases. Lots of cross over. Once you have one, then lots of times the others start to pile on.

It doesn't hurt to get tested. A blood test for the Sjogren's antibodies is a good start.

'Sjogren's world forums' is a good place to look in and see what Sjogren's patients have to say about cross over and symptoms.

Originally posted by Cradle12003
I had no idea about this disease thank you so much for posting this information

We had never heard of it before this past month either. Considering that millions and millions of Americans have this AI disease, you would think that more people would know about it and more doctors would know what to do with it. We have found that many of the doctors don't understand that this is a systemic disease.

I am 27....was diagnosed with Sjorgrens along with Lupus and all the fun stuff that comes with (insert sarcasm here).
This is the first time I have read where others with sjogrens experience sensitivity and allergies to certain meds and vaccinations....
I never really related the two....
My disease started to really show activity after a snowball of stress, pregnancy, and major life threatening infection around six years ago.
Since that time I've seemed to find one medication after the other that either causes horrific side affects or bonafide allergies (a few sending me to a hospital).
At this point I avoid taking any new medications if at all possible, as well as vaccines, and even take any new Rx at a time when the doc office is easily available in case of a reaction. I even cringe begrudgingly to get my son who is five vaccinations.
I think a lot of problems, especially with autoimmune issues, come from sources like chemicals in our environment, processed foods and hormones/other substances in our foods, vaccinations and medications.
Since severely minimizing the processed foods I take in, no milk and other hormone processed foods (I now drink soy almond milk), limiting unatural products and trying to use as much natural and green stuff as I can, limiting meds and avoiding vaccinations......my disease flares have improved a great deal.
Kind of brings about another point.....what exactly is the FDA there for when we are still not getting warning labels and they are finding traces of dangerous chemicals and even poisons in our food and everyday products??? I mean they recently found small traces of arsenic multiple applejuice products aimed at children....and WHY is there not more concern here. I don't trust anything about the FDA. If you wanted to target a children's age group for some reason, what do all kids drink, what do all parents buy for their kids to drink 'because it's healthy'? Applejuice is def up there on the list....I saw maybe two articles, hardly noticed, a SLIGHT price drop....no taking off the shelf, no major public stink about it.....just a statement that the levels of arsenic were extremely mild......and this is OKAY?????

I did not know that about the meds either. I have Sjogrens as well, and can not take MOST medications.
All to many put me in the hospital . All antibiotics, opiates, iodine, acid inhibitors., you name it. I CAN take tylenol,big whoop,lol

This is crazy...I never related the two....
There doesn't even seems to be any common factor in those I have a reaction to.....anyone else?
I've had reactions to everything from sulfa drugs, to antibiotics, to some forms of penecillin, to certain pain meds....the list goes on.

*bump* World Sjogrens Day today. I 'celebrated' by tripping over the computer cord and slamming my face into the wall. Squashed my nose. It hurts. argh!