Author Topic: what do you think might have "triggered" Sjogren's for you?  (Read 15388 times)

Nomad

  • Sr. Member
  • ****
  • Posts: 391
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #30 on: January 25, 2017, 12:07:25 PM »
Probably the perfect storm situation.
I already had lupus...but it was basically in remission.
Then, I started catching viruses from our new grandson.
Also, tremendous BIG TIME over the top stress...father died, craziness on a job that I eventually quit, a dentist likely made a mistake in my care and I ended up with HEAVY DUTY nerve pain that they ended up calling "atypical trigeminal neuralgia," crazy trail of meds to find out what would help that extreme pain and had to take Percocet, money problems from having to quit my job without any plan.....It was a year from HEXX. Next thing I knew, I had worse and worse dry mouth and dry eyes.
Went to rheumatologist and viola.....


LOLOLOL....I see this is an older thread and I posted before, but said the same things. Do you think my story makes sense?
« Last Edit: January 25, 2017, 12:09:13 PM 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.

Sharon

  • Hero Member
  • *****
  • Posts: 1329
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #31 on: January 25, 2017, 12:19:55 PM »
Accumulation of traumatic events.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

jazzlover

  • Hero Member
  • *****
  • Posts: 3110
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #32 on: January 25, 2017, 04:38:12 PM »
Emics .. I'm very sorry for the loss of your beloved baby.

Do you think you could have had Lyme disease? Are you in  a high risk area? Or did a lot of hiking or outdoor activities?
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Pete0211

  • Full Member
  • ***
  • Posts: 171
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #33 on: January 25, 2017, 05:00:02 PM »
I wonder if the hyperparathyroid that I had for ~15 years played into mine.

I'm pretty sure EBV has played a role, since I had mono in 1989, and blood tests showed elevated virus results when I started with the Sjogren's symptoms.

I'm sure work related stress from an 18 month period of insane work hours factored into it a wee bit.
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Restasis

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13558
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #34 on: January 25, 2017, 05:07:02 PM »
The parathyroid gland is a secreting gland so it could well be that it was affected by autoimmune disease. The thyroid gland is also a secreting gland as is the pancreas. Sort of hard to remember that it is more than the salivary glands. Irish

Fanciefrancie

  • Newbie
  • *
  • Posts: 31
  • Do more of what makes you happy
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #35 on: January 26, 2017, 02:38:41 PM »
While nursing my 2 month old 3rd child I came down with a severe bacterial infection (mastitis)  in my breast.  Less than a month after I was feeling better I started having the brain fog, severe fatigue and bilateral migratory joint pain.  It wasn't until after my blood tests pointed to SJS that I realized I had been having dry eye and dry mouth for years but I always chalked it up to something else going on. 

I believe I have always been genetically predisposed and stress and infections trigger flares.  I also think hormones played a big part.  So many post partum and menopausal women seem to be stricken my autoimmune diseases. 

I will note, I also had shingles when I was in college due to stress.  There has to be a connection. 
Mother of 3, Lupus, Secondary Sjogren's, dx 2015, Plaquenil, Celexa, Vyvanse, Vit D, Wine

Positive SS-A ( > 8 ) and ANA (>1:640)

Sharon

  • Hero Member
  • *****
  • Posts: 1329
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #36 on: January 26, 2017, 03:29:38 PM »
Pete- I also wonder about the EBV connection.
I was Positive for active EVB in 2009 and "Borderline" ever since, so it never truly went away.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Sjogrensmum

  • Newbie
  • *
  • Posts: 11
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #37 on: January 26, 2017, 10:08:20 PM »
My 12 year old daughter has recently been diagnosed with Sjogrens, its possible her trigger was glandular fever. However she's always been prone to infection and had her tonsils out at 6 years old so that could have triggered it or she may have always had underlying issues with it that may have gone unnoticed.
Cheers, Charmain 👍💑👱👨👦

wendyoh

  • Sr. Member
  • ****
  • Posts: 493
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #38 on: January 27, 2017, 12:37:51 PM »
 Another earlier precipitating factor way back also for me that I suspect could tie in was mono in my teens that seemed to recur several times for the next 5 years, and did get triggered by me going too low on carbs when I tired atkins diet back in the day, they thought maybe I had an enterovirus because mono not supposed to recur I guess. This was before the idea of Chronic Fatigue Syndrome had come about in the US.  But that dieting I did again when I was a little older that I mentioned earlier didn't help, something about too low of carbs makes me either sick or feel sick----unfortunately that seemed to trigger a gallstone + needing a cholecystectomy and I was never the same after that, had been pretty hearty and basically healthy and very active, there is more to the story involving a neck injury and I have seen some remote research that certain neck problems can trigger autoimmune issues because of the constant nervous system irritation and fight or flight mode...

I sort of got hosed both structurally and metabolically and probably virally....can't know if virus tied in too as precursor......symptoms of dryness didn't really become obvious until like 14 years into having chronic pain and fatigue. The body has such a complexities and I have found it quite a tangle to understand environmental, genetic and possibly infections issues that set the stage for it all..........
« Last Edit: February 04, 2017, 10:51:52 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

Fanciefrancie

  • Newbie
  • *
  • Posts: 31
  • Do more of what makes you happy
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #39 on: January 27, 2017, 08:31:06 PM »
My 12 year old daughter has recently been diagnosed with Sjogrens, its possible her trigger was glandular fever. However she's always been prone to infection and had her tonsils out at 6 years old so that could have triggered it or she may have always had underlying issues with it that may have gone unnoticed.

I am so sorry to hear your young daughter was diagnosed.  Glad you are here to help find it more about this crazy and unpredictable disease.  She is blessed to have a caring mother like you! 
Mother of 3, Lupus, Secondary Sjogren's, dx 2015, Plaquenil, Celexa, Vyvanse, Vit D, Wine

Positive SS-A ( > 8 ) and ANA (>1:640)

janny

  • Full Member
  • ***
  • Posts: 110
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #40 on: January 27, 2017, 11:33:34 PM »
Wow! Another perfect storm for me, too. I was extremely stressed in charge of planning my daughter's wedding, taking care of my dying mother in at-home hospice from COPD and had to spend numerous nights on the floor next to her bed listening to her oxygen and giving her breathing treatments 3x/night, was depressed and anxious and taking klonopin and numerous other antidepressants they were giving me and was diagnosed with interstitial cystitis, which was leaving me in pain constantly and on more meds! Before you  now it, my eyes started burning and then overnight my saliva dried up. I have gone over and over this in my mind and tried to figure out exactly which drug or event caused this, but I think it was just everything at once--oh yeah, also left out that I had just had my last period, so hormones no doubt played a part.

Maria3667

  • Hero Member
  • *****
  • Posts: 820
  • Cultivating a 'dry' sense of humor.
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #41 on: January 28, 2017, 01:56:27 AM »
I certainly think EBV played a major part as we all seem to have been infected in the past. Also for me Lyme infection even though I was treated within a week with AB.
52. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Pilocarpine, thyroid meds, 25mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

gurs

  • Hero Member
  • *****
  • Posts: 2709
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #42 on: January 28, 2017, 04:53:42 AM »
one word....HORMONES!!!!  my sjogrens symptoms started when I just started puberty around 12 years old. Then, after my hysterectomy 10 years ago, my Sjogrens has been out of control. I know so many things can trigger autoimmune. I just had a sinus surgery last august and Im still flaring big time from this as well. Im sure its different for all of us.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Wal

  • Full Member
  • ***
  • Posts: 191
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #43 on: January 29, 2017, 03:36:39 PM »
I went through some major family stressors in 2015. Within a few months I was sick with SS symptoms. So I feel stress was my trigger along with hormone changes.

wendyoh

  • Sr. Member
  • ****
  • Posts: 493
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #44 on: January 29, 2017, 03:44:28 PM »
Probably the perfect storm situation.
I already had lupus...but it was basically in remission.
Then, I started catching viruses from our new grandson.
Also, tremendous BIG TIME over the top stress...father died, craziness on a job that I eventually quit, a dentist likely made a mistake in my care and I ended up with HEAVY DUTY nerve pain that they ended up calling "atypical trigeminal neuralgia," crazy trail of meds to find out what would help that extreme pain and had to take Percocet, money problems from having to quit my job without any plan.....It was a year from HEXX. Next thing I knew, I had worse and worse dry mouth and dry eyes.
Went to rheumatologist and viola.....



Nomad--could you tell me if you resolved your dental problem? I get  bad pain when have teeth issues....it can set off ICH headaches, spine pain, feet pain and eye pain etc and right now am dealing with that after having a crown put back on that fell off --an older crown that had been fine. I think either the tooth crackd in the process or she didn't get the bite right or she ground too much of it and its not covering my tooth well enough anymore. But it set off some other teeth now too so its going to be hard to ferret out.
I will send you PM too
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