Author Topic: what do you think might have "triggered" Sjogren's for you?  (Read 15496 times)

LilliaT

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I might not be phrasing this exactly correctly, but do you have any thoughts or suspicions as to what might have "triggered" Sjogren's for you?  For example, I've read that some doctors believe that autoimmune disorders may be triggered (in people who are susceptible to them) by some kind of viral infection.  I've also seen a lot of posts by people speculating that some medication (e.g., Accutane), a surgical procedure, or some kind of traumatic injury might have been the triggering factor for them.   (These posts have also led me to wonder whether I should reconsider an upcoming surgical procedure that I had planned to undergo -- I have a small umbilical hernia that probably occurred when I was pregnant 9 years ago, and I'd been making arrangements for surgery to have it repaired.) 

Personally, I've been wondering Accutane might have been a factor for me.  I really regret taking it -- not just because of the side effects (which read very much like a list of Sjogren's symptoms), but because I probably didn't even really need it.  (I later realized that my occasional breakouts -- which were never even that bad -- were a reaction to gluten.  When I cut out gluten, my skin completely cleared up.  But that was after I'd already taken 2 courses of Accutane -- once 15 years ago, and once maybe 7 years ago.) 

I understand there's no way to know for sure, and that there are probably countless contributing factors for everyone.  But, just out of curiosity and in a totally non-scientific way, I was hoping to find out if other people had any thoughts about what might have triggered their autoimmune issues. 
Early 40s. No diagnosis. Negative lip biopsy (maybe done too early?). Negative SSA/SSB, but positive ANA (just went up to 1:160, nucleolar). Dry eyes and migraines since teens. Dry mouth, fatigue, and now joint pains are new.  Aside from ANA, negative on all other autoimmune bloodwork.

Navigator

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #1 on: June 28, 2016, 10:32:51 AM »
Untreated very very low Vitamin D levels in blood, menopause and changes in hormone levels, stress.
Are my top three suspicions.  I already had one autoimmune disease diagnosed when I was 27 so I was already primed to develop something else.
Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

kimberly64

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #2 on: June 28, 2016, 10:45:28 AM »
Lyme disease.
Kim
Sjogrens, Evoxac, Restasis , Omega3

Jasper

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #3 on: June 28, 2016, 11:10:03 AM »
While I am sure I was/am genetically predisposed to Autoimmune Diseases, I am fairly certain that Hepatitis C was the trigger for developing Sjogren's Disease (in me).
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

Liz D.

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #4 on: June 28, 2016, 11:32:36 AM »
I feel my trigger was the extreme stress I went through when my father died.

Liz D.
57 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 200 mg; Levoxyl 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Hormone Replacement Therapy, vitamins, calcium, flaxseed, biotin

felpeyu2

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #5 on: June 28, 2016, 01:47:22 PM »
I'd say mononucleosis was my trigger (I had mononucleosis at 23 years old).

Carebear

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #6 on: June 28, 2016, 02:26:54 PM »
Menopause at age 38, and my mom's passing away less than two years later.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

Deb 27

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #7 on: June 28, 2016, 04:30:44 PM »
Lilla, in reading everyone's response, it seemed like I had something in common with almost all of them, so it's hard to say. I worked in health care, had exposure to a lot of viruses, I had subclinical Hepatitis B, mono, early menopause, and a ton of stress.  I also had a case of undiagnosed colitis for years. That screws with your immune system.  I also had other auto immune diseases like hashimoto's and morphea (scleroderma of the skin). Sorry I didn't have any one answer for you.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

warmwaters

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #8 on: June 28, 2016, 05:10:34 PM »
I had a bad gastro infection with cDiff.  First time I had the profound fatigue was with that. The profound fatigue then started reoccurring several times over about 4 months, and then I went into "full blown" problems with Sjogrens, and was diagnosed shortly after.

I had dry eyes and mouth prior to this event, but they had been dismissed as "you are getting older" and "you are post menopausal" so it's hard to say if I already had some mild symptoms.  The dry mouth just meant I needed some extra water during the day, nothing severe.  Ditto with the eyes.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Lindabridge

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #9 on: June 28, 2016, 07:58:32 PM »
I was diagnosed with a more rare autoimmune disease , relapsing polychondritis, about 20 years ago. I stayed on the standard regimen-- first prednisone, then two years of methotrexate. During this time I became cognizant that my flares were related to gastrointestinal issues. To make a long story short, I tested positive for intestinal permeability. My GI Doctor simply recommended that I eat more fiber, but that didn't help at all. After experimenting with several probiotics, which were all in the infancy stage at that time, I found one that did the trick. After one month, my symptoms were gone.

This year, about eight months ago, my symptoms reappeared after a long remission. I assumed that they were related to severe heartburn which would come on suddenly every afternoon towards dinner time. I resumed taking the same probiotic, as well as Nexium. The symptoms subsided.

In January of this year, I stupidly indulged my vanity and had cosmetic surgery which entailed a neck lift. The surgery went without any complications, and I look rested and younger. However, the stress of the surgery was too much for my body. By the end of January, I was experiencing all the classic symptoms of Sjogren's. I am seronegative,, but my rheumatologist put me on Plaquenil at the beginning of May.At the same time I started the " collagen cocktail." In all honesty, I feel less tired, and my eye burning is less severe. I don't feel as if someone put a blow torch to my eyes all day. But I still have the dry throat issues. I tried taking the wondrous probiotic that worked 20 years ago, but it was completely ineffective in my fight against Sjogren's

I am convinced that  the surgery triggered Sjogren's. Even though I was predisposed to autoimmune diseases, this trauma was the straw that broke the camel's back. I'm hoping that Plaquenil will stop the progression  of the disease, but I am still actively pursuing alternatives to it. I plan on trying other probiotics, or other digestive enzymes.

What worries me most is the possibility of contracting lymphoma. My submandibular glands are inflamed, and my salivary glands ache when I eat or drink certain things.
I haven't read of anyone else mentioning lymphoma on this forum.
Is this the elephant in the room?
Relapsing Polychondritis,Secondary Sjogren's, Acid Reflux,Osteoporosis, Synthroid, Plaquenil, Losartan HCTZ, Acidophilus,Omega 3, D3, Calcium, B12, Restasis

Tharrell

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #10 on: June 28, 2016, 08:30:58 PM »
Mine started with a very bad flue followed by two bouts, or one that didn't go away, of impetigo. That was almost four years ago. Took three years till proper diagnosis!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

Dawnmist

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #11 on: June 28, 2016, 11:05:20 PM »
Glandular Fever when I was 15. The illness knocked me out of school for a term, and then it "relapsed" with the fatigue knocking me out of school for the next 3 terms and never really went away...I just struggled on despite the fatigue/muscle pain/tendonitis attacks/inability to sleep decently/etc.

Sjogren's didn't get diagnosed - or treated - until I was 38. It took me saying to my then GP that I couldn't continue to live the way I was anymore and collating what my pain levels were over the course of a month rather than complaining of specific issues...only then did he think that maybe he should test whether there was anything autoimmune going on.

I got lucky - my blood tests scream Sjogren's. I dread to think where I'd be now if I'd been seronegative - the medications over the last year have made such a huge difference to my life!
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, LFN (sensory) Confirmed Dec 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Gabapentin, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

gurs

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #12 on: June 29, 2016, 04:07:21 AM »
Genetic disposition for certain. All my female cousins on my mom's side all have some form of autoimmune disease.
My sjogrens started right at puberty, if not sooner. I now remember back in grade school where I was so tired and fatigued all the time..always wanted to sleep. My mom said even as a baby/child, I always wanted to sleep. It was manageable until I had a hysterectomy 10 years ago and went into menopause....triggered of firestorm of Sjogrens/Lupus that has been a nightmare to say the least. I say genes and hormones, and infections are main triggers.

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

SjoDry

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #13 on: June 29, 2016, 08:59:08 AM »
Boniva

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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

snoweye

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #14 on: June 29, 2016, 09:24:11 AM »
Hi everybody,
This post will serve as my introduction. I am a 31 year old male from the UK. My username is Snoweye because there was a light dusting of snow in January when I went for a morning walk and my left eye started tearing excessively. That was when life really started to change.

I have mild suspicions that something autoimmune may have been developing for a long time. First of all, as a baby I received very little breast milk and throughout my childhood had many courses of antibiotics. A family friend told me that I often used to complain about being tired and cold as a young child. My muscles were always relatively stiff, then at age 19 I developed Raynaud's and started having periods of fatigue.

I will skip my twenties in the interest of brevity. My Sjogren's type symptoms started recently and suddenly at age 31 after following a very low carb ketogenic diet for about 9 months. I gradually slipped into this way of eating gradually because at least in the short term it helped my IBS reducing symptoms such as bloating and flatulence. At the end of the 9 month period my health seemed to deteriorate rapidly in a few short weeks, and then literally overnight everything got much worse. I have not be the same since. From that point, I have suffered from dry eyes, dry mouth, dysfunction of my sweat glands and a myriad of other issues that are all new to me.

Like many on this board, I am still struggling with a diagnosis.

Snoweye