Author Topic: what do you think might have "triggered" Sjogren's for you?  (Read 15497 times)

wendyoh

  • Sr. Member
  • ****
  • Posts: 493
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #60 on: February 03, 2017, 07:58:22 PM »
I agree Nymph. it is helpful to feel like you have some medical answers.....for me I think its because, even though I KNOW myself and that its not my personality to be sick, there is an invalidation in society sometimes to those chronically ill, hints that it might be more attitude or something than "real".....so I always feel better to get more pieces to the puzzle, even if that can't fix it.
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

WhatYouSjo

  • Full Member
  • ***
  • Posts: 151
    • What You Sjo
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #61 on: February 04, 2017, 06:58:45 AM »
LilliaT,

Your situation sounds very similar to my own, including your ongoing symptoms. In addition, there was a small dark spot under the tooth in X-rays that shouldn't have been there.

I did eventually have the tooth (a molar) removed. After my SS symptoms appeared, swelling began to grow under the tooth, with increased discomfort. I visited a new dentist who told me it needed to come out. When it was removed, I was told there was one of the worst infections they had seen underneath. I ended up with an implant, and haven't had any issues with it so far.

The process to get an implant was long and fairly costly, but in hindsight, I wish I'd done it earlier. I would recommend that anyone getting an implant go to an experienced periodontist even if the price is a little high; implants are not a good place to cut corners!
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

corrinzz

  • Newbie
  • *
  • Posts: 1
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #62 on: March 01, 2017, 07:49:30 PM »
Newly diagnosed with Sjogren's after seeing my eye dr for severe dry eye. She sent me to a rheumatologist, as I have a history, 25 yrs ago, of Hodgkin's Lymphoma, stage 3B, which included a laparotomy to stage cancer and remove appendix, and then chemotherapy. Rheumatologist did a series of blood tests that confirmed Sjogren's. So for me, I can't help but think the Hodgkin's, or the treatment for, might have triggered Sjogren's. However, a year ago, I had ACDF (anterior cervical discectomy w/fusion) surgery on a herniated disc. I've also had 4 knee surgeries, tonsillectomy, a hysterectomy, and deal with some very stressful situations... so with all that, I wonder if my immune system has just taken a beating over the years and all of this history has triggered Sjogren's..?

LIZARD66

  • Newbie
  • *
  • Posts: 6
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #63 on: May 10, 2020, 11:18:37 PM »
I'm wondering if being on keto for the past 4 years has done it. That's how long I've also had some of my symptoms. :(

vrystaat

  • Full Member
  • ***
  • Posts: 131
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #64 on: May 11, 2020, 05:48:43 PM »
I have had SS since 1992, starting with a severe peripheral nephropathy (so-called Neuro-Sjögrens Syndrome).
Just prior to this owing to severe symptoms, I was diagnosed as Polyarteritis (another auto-immune disease).
This was incorrect.
My Labs showed a CPK of over 2500 units, but this was not specifically diagnostic to the Rheumatologists. A terrible mistake.

I did not get a diagnosis until much later (1998-2001). I was being seen at a University Clinic for years without a diagnosis, even though I saw several Rheumatologists (academic).
No diagnosis was ever made until a relative mentioned that I could have this condition. My daughter's research also pointed to this. All my laboratory tests were constantly negative.
Finally, I became very ill in 2001, and all my tests turned positive:

ANA, Rheumatoid factor, ESR high, a low number of white blood cells (leucopenia), C-Reactive Protein (CRP), positive monoclonal immunoglobulin proteins, and clinical signs of Sjögrens:
Extreme fatigue, dry eyes & dry mouth, difficulty chewing and swallowing, decreased sense of taste and smell, joint pain, and swollen glands.
SS-A (Ro) and SS-B (La) antibodies were never positive.

In 2001, my Creatinine phosphokinase started increasing again, and I experienced severe muscular pain & wasting.
I was therefore diagnosed as having Polymyositis, on top of the Sjögrens Syndrome. I was started on high doses of Prednisone, and later Cellcept.
Finally, after 5 years of requests by me, I was granted to receive IVIG.

This poor performance by Rheumatologists and other Physicians still leaves me astonished. I have improved by about 50% due to the IVIG.

As to the possible precipitating factors, I can suspect two episodes of Mononucleosis. But the main factor I think was my extremely stressful job, with lack of sleep and 50-75 hour work week.
My spouse was severely ill with a Borderline type Personality Disorder. This meant that my life was extremely abusive and stressful. I consider this a major factor in my illness.

I have shortened this story considerably.
Best wishes to all.
« Last Edit: May 26, 2020, 11:10:18 AM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

deeindiana

  • Hero Member
  • *****
  • Posts: 533
    • Deb Perry Studio: photography & graphic arts
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #65 on: May 12, 2020, 04:05:19 PM »
I've always had symptoms of sjogrens but never put it all together. But eight months before I had my first real flare I got my first treatment of botox to smooth the wrinkles on my forehead. I've always wondered if that could have had anything to do with the disease suddenly kicking in. Probably not...but deep down I wonder.
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 62
Difficulty swallowing, fibromyalgia, burning mouth, GERD, anxiety, dry, dry, dry!
Medications: Atenolol, Dexilant, Plaquenil
I am my own worst enemy...

Judie P

  • Hero Member
  • *****
  • Posts: 660
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #66 on: May 20, 2020, 06:39:06 PM »
I believe mine is from mononucliosis when I was 18.
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

sunflower

  • Full Member
  • ***
  • Posts: 168
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #67 on: June 15, 2020, 12:37:06 PM »
I already had very dry eyes, but after my radiation for my breast cancer (2014) I developed the other sicca symptoms, peripheral neuropathy, etc.  It was then I began to research and suspect Sjogren's.  Autoantibody tests did not confirm it but more symptoms keep appearing.  Incidentally, my radiation site continues to be extremely tender, unheard of with radiation.

At the time of my breast cancer I had to go off estrogen so my long-standing menopause symptoms erupted with a vengeance.  And they continue (I'm 76).  So that may be a factor too.

Sunflower.
Sjogren's - eyes dx Feb/06, variety of new symptoms 2015, seroneg, lip bx 6/16 neg; early AMD; chronic lymphocytic leukemia dx 2006; kidney disease stage 3; breast ca - surgeries, radiation 2014
Rx:  coversyl+, amitriptyline; supps: Vitalux, Omega 3, calciuim

peggyb

  • Newbie
  • *
  • Posts: 3
Re: what do you think might have "triggered" Sjogren's for you?
« Reply #68 on: June 16, 2020, 02:47:10 AM »
Oh what a relief to find this forum first of all! Much more helpful than the British one.

At 71 I've always been healthy apart from osteoarthritis which became a problem from about 10 years ago, though manageable. I had both hips replaced, the first in July 2018 and the second in February 2019. I was on the waiting list for quite a while so after I retired my main health concern was arthritic pain. But I truly was not aware of any SS symptoms before my operations.
I mentioned the dry mouth several times to various doctors and the dentist who said it would be the post op medication (codeine, ibuprofen and paracetamol) and more recently the GP who said sleeping on my back and central heating. SS and diabetes blood tests were negative.
I now have all the symptoms although thankfully not usually all at once and they do come and go.
So, could it have been the THRs responsible? Or did I simple not notice the gradual onset? Intrigued by others with dental problems,  as I've had difficulty here for years, and a dentist doing dodgy implants didn't help.
Sorry this is so long.