Author Topic: what do you think might have "triggered" Sjogren's for you?  (Read 13777 times)

jazzlover

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #15 on: June 29, 2016, 10:55:34 AM »
Lyme disease
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

bluegardenia

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #16 on: June 29, 2016, 02:10:20 PM »
when i was a child i was always sick . they took away my tonsils whn i was eight, they used to do that very easily in 50 60 and before. it seems that this can lead to rheumatic desease. i descovered my positive reuma test just 20 years ago. since then i started to check anti ana and anti dna, once they were negative once positive then always pos anti ana. but no symptoms. sjogren arrived three years ago but my eyes were dry since ten years, nobody gave any importance to that, all my friends of my age have dry eyes... but then dry mouth arrived . im sure that the death of my father and most of all the death of my son  eight months after triggered sjogren. stress and pain.
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

plusher

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #17 on: June 29, 2016, 05:47:01 PM »
Hi,

I just joined this forum even though I've lived with Sjogren's since I was 12 (I'm 54 now). I wonder if my trigger may have been chicken pox at age 10, because I was a pretty healthy kid. No problems until my parotid glands started swelling at 12, not diagnosed until 22. I'm fortunate in that my symptoms have been limited to dryness of eyes, mouth, skin, etc., but I did develop lupus around age 40. Also, in the past couple of months, my eyes are much drier; I'm putting in drops every 15 min; perhaps due to aging (yay!) Seeing a corneal specialist regularly for the dryness.

I think Sjogrens is probably genetics (I'm adopted and have no biological info on my background) and a trigger. Seems we've all had different stressing triggers.

Carol101

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #18 on: June 30, 2016, 07:40:31 AM »
This is in response to lindabridge regarding lymphoma. I am most concerned about the lymphoma risk. I had breast cancer in the past, and I am already at an increased risk, just due to past chemotherapies. Salivary gland swelling (about 30% of pSS have this), and Cryoglobulinemic vasculitis are known risks  There are biomarkers (blood tests) they can follow to see if you are in the group of Sjogren patients that are at high risk. Some studies are dividing patients with these markers at the time of diagnosis, into high vs low risk. My concern with that is the time it takes so many of us to get diagnosed, some early, some much later. Do they stay stable over time or progress.? This group looks at blood work every 3- 6 months. See below.
One study used patients with chronic salivary gland swelling, mainly parotid gland, but also submandibular swelling lasting more than 2 months, as a criteria. They went on to subdivide those patients into having these biomarkers or not. These four serologic biomarkers were significantly associated with the presence of lymphoma, i.e., cryoglobulinemia, low c4, anti- ssb/ La, and leukopenia, Patients with chronic swelling and having 2 or more biomarkers had a 9 fold risk of lymphoma while having just one or zero had a 90 % negative predictive value for lymphoma. They are Looking at RF as well. Some researchers think this might be a simply cheap test to ascribe risk. I believe that is still being fleshed out.
These are the tests I plan to get.: C3, C4, Cryoglobulin, SPEP


http://www.rheumatologynews.com/specialty-focus/lupusconnective-tissue-diseases/single-article-page/acr-cryoglobulinemic-vasculitis-in-sjoegrens-linked-to-lymphoma-mortality/44b9eac347dacfc8145151cfbb6c656f.html

hopeforall

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #19 on: June 30, 2016, 08:14:10 AM »
3 months back, I was prescribed an anti-viral. Within 2 days, I had a variety of side effects including irregular heart rates, nausea, chills, dry eyes and mouth. I stopped it immediately but the dry mouth and dry eyes have persisted ever since. I have been able to identify that the dry eyes are due to Meibomian Gland Dysfunction. I have also started having dry throat, legs/ arms falling asleep often.
« Last Edit: July 05, 2016, 06:33:08 PM by hopeforall »
27 Years old: Seronegative: Dry Eyes(Bilateral Blepharitis due to MGD), Neuropathy in hands/feet, Polyarthralgia, Dry Mouth, Dry Throat: Vitamin D 2000 IU, Omega 3 Softgels, Gluten-free Vegetarian Diet

Judie P

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #20 on: June 30, 2016, 02:04:14 PM »
I always had constipation, digestive issues and sinus problems my entire life.  I am 65 now.  No autoimmune diseases run on either side of my family.  I had mononucleosis when I was 18.  I developed gastritis from that.  At 25, I had a female organ procedure done which turned into a ruptured appendix.  That turned into a blocked intestine.  I went into menopause at the age 52.  At the age of 57, I started getting my regular period again.  After hearing many different opinions on what was happening from cancer to polyps, I had a mine field of polyps removed at the age of 59.  They inserted a Mirena IUD for progesterone instead of me taking pills.  Up to that point and through the first year of insertion, I still bled and cramped, keeping me on Motrin 600mg every six hours to stop the bleeding and cramping.  After about a year of insertion, I began to feel my feet and ankles go numb.  I also noticed drying of the mouth, nose and eyes, about five days of every month.  By the time I was off of the motrin, my body was having numbing throughout and lots of digestive issues.   I kept thinking I had diabetes, but nothing showed.  I had a hair sample done by a not so reputable natureopath, who said my symptoms seem to be Parkinson's, because I was low on dopamine.  By this time, my stress level was so high and anxiety took over, that I thought I had MS or Parkinson's.  For the first five years of the IUD, my doctors told me I had chronic anxiety and did not have MS or Parkinson's.  It was not until last year that a kind Nurse Practitioner decided to run all the autoimmune tests.  My SS-A test was off the charts.

Where did mine start?  I think it is possible with the IUD (which I still have for six and a half years and will be speaking about to my nurse practitioner in two hours).
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

Lindabridge

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #21 on: June 30, 2016, 03:46:30 PM »
Carol,

Despite the fact that you are categorized as a "newbie," you seem to be familiar with quite a few tests and what they indicate.  I was an English teacher for many years, and my biology skills and knowledge are weak.

Can you explain the following to me?  Low C4, and anti La?  I have the results of my comprehensive blood testing and would like to see if I have any of these significant factors.  Since my parotid and submandibular glands have been swollen for months, you can imagine my concern about lymphoma. The good news is that I was diagnosed within a month of my symptoms first appearing.

Thanks.

Relapsing Polychondritis,Secondary Sjogren's, Acid Reflux,Osteoporosis, Synthroid, Plaquenil, Losartan HCTZ, Acidophilus,Omega 3, D3, Calcium, B12, Restasis

SjoGirl

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #22 on: June 30, 2016, 04:56:50 PM »
A perfect storm - menopause, nasty viruses, extreme stress.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

jazzlover

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #23 on: June 30, 2016, 09:12:34 PM »
Judie P .. look into copper imbalance
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Carol101

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #24 on: July 01, 2016, 06:59:29 AM »
Lindabridge,
I am a retired RN.  I have been researching to figure out my symptoms and hopefully see if there is a way to identify, as early as possible, some of the more serious complications that can accompany pSS.
C 4 is a protein in your blood. It is part of your complement system, which plays an important role in your immune system, Its job is to help kill disease causing bacteria and viruses. If you are a healthy person a low C4 level would indicate an active infection, unfortunately, in pSS and other autoimmune disorders it means your body is actively attaching itself, it is an indication of how sever the process is and inflammation. SS-B/La antibodies are found primarily in patients with Sjogren?s Syndrome or lupus erythematosus (LE), it is one of the tests used to diagnose pSS ( primary Sjogren's Syndrome). The other risk factor for lymphoma is finding Germinal Centers in the salivary glands from a lip biopsy. None of my blood tests are positive except for ANA. My salivary glands, both submandibular and parotid, have been slightly swollen for six months. I may ultimately need a biopsy, but will only get one from someone experienced that uses a pathologist familiar with looking for Germinal Centers.

Best regards,

Carol

https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=complement_c4_blood

 http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/81359

Nomad

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #25 on: July 01, 2016, 11:02:15 AM »
Mine has some similarities to other posts. 
Also "a perfect storm," situation.

I already had lupus for many years, but it seemed to be in remission.

Then, during a relatively short time the following things happened: my father died, I had big trouble at work with a crazy boss, and I quit, I had a dental procedure with an inexperienced dentist that went very wrong and my trigeminal nerve was damaged.  The pain was outrageous and basically permanent ...although I have more control.   I still take meds for it (TN) to this pday...four years later.

 Our first grandson was born.  I was expected to help our DIL, which was rough under those conditions.

Got a bunch of sinus infections in a row...now better (crossing myself)

This all happened in a little less than a year. 

Worsening dry eye and dry mouth throughout. Depression off and on (this is better today, thank goodness).

Then I got the dx of SS. 

If something makes sense to someone, please let me know.

***The time right before my dx was close to if not the worst time in my life...ESP with reference to stress.
« Last Edit: July 01, 2016, 11:22:28 AM by Nomad »
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

Scottietottie

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #26 on: July 01, 2016, 11:58:47 AM »
Pregnancy, post natal depression, parental deaths, menopause and I never was particularly healthy. Lots of childhood illnesses.
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

wendyoh

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #27 on: January 25, 2017, 06:09:25 AM »
this wasn't one of my most prominent triggers of chronic health problems---but one of the precipitators or environmental contexts for me the year everything started deteriorating for me on a number of levels is I was doing a diet from a place called the Diet Center in '89---and was on a very low carb diet and probably in ketosis---I noticed a few times back in my 20s that if I went on too restrictive of a diet that I would go into a strange state of discomfort that would take a while to come out of....hard to remember it all now but over the years I learned I have to stay clear of low carb food plans or start to get really uncomfortable physically and mentally. I have wondered if could have some obscure form of porphyria because of chemical sensitivities and when in certain flares it can be mitigated sometimes by increasing carbs (ie when still went out in the sun and heat and would get flared from that when got older having a shake or something could help relieve some of the fatigue/brain problems triggered).

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addendum 2-4-17: I was re-reading this thread, still haven't looked at all of it thoroughly but I want to add I think I must have been reading a couple of threads of forums because part of what prompted me to share that particular aspect of predisposing possible trigger events was that someone had written something similar prior and I could relate,had wondered if nutritional choices can be part of setting stage........at any rate I cannot on a quick look find any posts that seem to talk about carbs etc in this thread
« Last Edit: February 04, 2017, 10:50:18 AM by wendyoh »
sjogrens, cervical stenosis, bulging cervical discs 4 level, DDS, DJD, emerging vertigo, cfs, fms, gerd, plantar fascitis, corneal erosion, some other stuff :)
not trained in medical field so just share my experience and opinions as a consumer and lay researcher trying to get more well-ness

belovedchaos1

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #28 on: January 25, 2017, 08:38:33 AM »
Reading everyone's responses are very interesting and heartfelt. Hug

Hmm - it's hard to say for me. I was very sickly when I was younger. In and out of hospitals and on antibiotics a lot back then. The first really big illness I caught was a super flu in my teens. Was bed ridden for a week... then in college I caught walking pneumonia, then a few years after that two boughts of strep in the same year. Lots of stress through out my life since I was little...so probably a little of everything I guess.  :-\

Emics

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #29 on: January 25, 2017, 10:48:14 AM »
Hmmm.... So different in my case. I am surprised reading all of you. I am 40. No autoimmune diseases in my family, I was a healthy baby and child, no diseases, few antibiotics, never cutaneous reactions, no allergies...

I have never felt fatigue, joint pain... (so far, I must admit I am scared because I dont know what will happen in the future).

When I was 34 I started with keratoconjunctivitis, corneal ulcers, very dry eyes. That point worsened my quality of life. No diagnosis in that moment, several ophtalmologist said it couldnt be Sjogrens because I was young. If I think about my past, I must admit that since my 20s I had dental issues even with a careful hygiene, needed to chew food for a long time and drinking lots of water to help, a "funny" shape in the edge of my tongue, and pain in my parotids with acid flavours: issues that currently I know are related to poor amounts of saliva flows. But you know, with that age you think everything is normal and I dont know how is the feeling in "somebody`s mouth".

I was diagnosed last year, as I told here. I was happily pregnant, everything was perfect but when I was in my 20th week an atrioventricular block was detected in my baby. It was lethal 3 weeks later. This is a very, very rare complication of being anti Ro positive (only 1-2% of anti Ro positive mothers have this risk). My level was 7200. I couldnt believe it. You can imagine the shock.

I dont know what triggered this stupid disease in me. I cant explain as you. I only remember when I was 20 a terrible influenza (or I thought it was influenza) that I felt like I was going to die. Maybe it wasnt influenza and it was a mononucleosis, and that`s the reason why I started to have slight symtomps, until my lacrimal glands were so hurt that I started with corneal ulcers 14 years later.

That?s my hypotheses.