Author Topic: what do you think might have "triggered" Sjogren's for you?  (Read 16044 times)

Sharon

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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....

wendyoh

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #46 on: January 29, 2017, 07:09:41 PM »
Nomad and Wendy- This might be of interest to you:

http://www.rheumatologynetwork.com/news/periodontal-disease-and-ra-connection-no-longer-mystery?GUID=25557D86-DA87-429D-80DA-3FE11274AC49&XGUID&rememberme=1&ts=26012017

wow thanks Sharon, that is great research to share and so new

I will show that to dental specialist I am going to see soon.........but if Sharon/anybody here has a science background and has any thoughts on how to put it in detailed civilian terms what the mechanism is there that translates to systemic pain with dental......would be interested, I think I get the gist of it but might be aspects I am missing because of limited bio educational background

did some searching and found this explains a bit, but I would like to find what more to do about it besides brushing flossing and regular dental care..........anyway thanks again Sharon!
« Last Edit: January 29, 2017, 07:25:42 PM 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

araminta

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #47 on: January 30, 2017, 03:08:08 AM »
My symptoms started two years ago after I got some flu type virus which made me feel very queasy.   My husband also caught it but got over it, however I went on and on feeling  under the weather, then I got labyrinthitis which last over 8 weeks, as well as being hit by extreme fatigue which came on very suddenly, dry sore eyes, dry mouth, rashes, mouth ulcers, etc. 

I'm still not sure if that was exactly the start of the problem, however, as several years before I had had dry eyes which had responded well at that time to flax oil.   Also I'd had a strangely dry nose for about a year before I caught the above mentioned virus.   And a few months before the virus I had a big emotional stress in my life.   So how do we ever sort all this out? :-\
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Nomad

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #48 on: January 30, 2017, 10:32:57 AM »
Wendy...I had a bizarre series of events that just seem to have been one mistake after another in terms of my dental care. What happened next was I ended up with super bad nerve pain. I tried a root canal, but it didn't work. So, desperate to get the pain to stop, I agreed to have the tooth removed. The pain worsened. I also developed a fever at this point, but underwent a biopsy of the area and a very significant number of tests via bloodwork and no infection was ever found. I ended up seing an oral surgeon who was also an MD who told me to go to a neurologist.  I saw a neurologist who was very kind to me. We tried all sorts of meds. I am sensitive to meds, so that didn't go all that well. I ended up on a compounded cream that I have made for me that I rub on my facial nerve where the pain is. Since, the tooth was removed, I don't have tooth pain. It was three difficult years. The cream really helped. The last 3-6 months have been much better and I still use this facial cream, but less often. IMHO, I suspect that folks with AI issues are a little more prone to nerve pain....and it is imperative that we see top notch dental professionals. (I also sent you a pm)

Sharon...Thank you for that interesting and informative link!
« Last Edit: January 30, 2017, 10:45:38 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.

Judie P

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #49 on: January 30, 2017, 07:06:21 PM »
Mono when I was 18.  I am also a DES Daughter.  Didn't get diagnosed until I was 64.
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

wendyoh

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #50 on: January 31, 2017, 12:55:09 PM »
Mono when I was 18.  I am also a DES Daughter.  Didn't get diagnosed until I was 64.

Judie, how does one find out if they are a DES baby?
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

Judie P

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #51 on: January 31, 2017, 01:30:36 PM »
Diethylstilbestrol (DES), formally known as stilboestrol (BAN), is a synthetic, non-steroidal estrogen of the stilbestrol group that was first synthesized in 1938.[1] It is also classified as an endocrine disruptor.  From about 1940 to 1971, DES was given to pregnant women in the mistaken belief it would reduce the risk of pregnancy complications and losses.
In 1971, DES was shown to cause clear cell carcinoma, a rare vaginal tumor in girls and women who had been exposed to this drug in utero. The United States Food and Drug Administration subsequently withdrew DES from use in pregnant women. Follow-up studies have indicated that DES also has the potential to cause a variety of significant adverse medical complications during the lifetimes of those exposed, including clear cell carcinomas. Individuals who were exposed to DES during their mothers' pregnancies are commonly referred to as "DES daughters".

Some studies say that autoimmune diseases are not connected to DES, as we are the exocrine system, not the endocrine system.   To find out you need to ask your mom if she took the drug while she was pregnant with you.  Also, there may be records, if she had miscarriages often.  Lots of love!
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

wendyoh

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #52 on: January 31, 2017, 02:44:36 PM »
thanks Judy--yes I have been fascinated about DES for a long time after saw Docu in 90s where they had learned it changed things at DNA level and your children could inherit some of the same health concerns or mis-formed arms etc

I am old enough it could be issue....there isn't a way right now I could find out by record, people are passed etc, but I was curious if you meant there  was  a test that shows some way if you were exposed, I suppose that's unlikely

It makes sense it could be related to AI
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

Lotus1

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #53 on: January 31, 2017, 04:27:43 PM »
I suspect dengue fever when I was 6 yrs old.
Sure I had sjogrens beginnings in high school.

Anyone I've seen for nutritional/natural treatment are adamant the digestive system is the problem.
However, they don't get it fixed.
I've heard the digestive system is blamed for a lot of illnesses.

Lindabridge, I had mild lymphoma removed from my left parotid (large salivary gland) oct 2015, radiation Feb 2016.
It seems I've permanent damage due to nerves being cut, couldn't avoid it, delicate surgery.
Trust your glands will be ok lymphoma wise.

Lotus1
« Last Edit: January 31, 2017, 04:36:16 PM by Lotus1 »

WhatYouSjo

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #54 on: January 31, 2017, 09:14:22 PM »
I have no family history, and as a youngish male don't fit the 'typical' demographic profile for SS.

I have long suspected that a bad tooth dating back over a decade was the culprit. I had multiple root canals over many years, and it was never quite right. I suspect that a bacterial infection lingered all those years, upsetting the balance of my immune system. During that time my eyes became more and more dry. Then, during a particularly stressful period, other symptoms (joint pain, fatigue, dry mouth) suddenly appeared. That was when I began searching for a diagnosis.

In hindsight, I wish I had pulled that tooth when it became clear that it was an ongoing problem, but my dentist advised against it.
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.

heidiaj

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #55 on: January 31, 2017, 11:01:14 PM »
What a string of replies!!  Very interesting to read everyone's experience.  My heart goes out to all of you.  In 2007, I was hospitalized for a week with agranulocytosis.  My white blood cell count was almost nothing, to the point that they gave me a bone marrow biopsy in the ER, thinking I had leukemia.  I went in with a really bad sore throat that came on suddenly, and only went to the ER because it was a weekend, and I wanted to get on an antibiotic quickly (I was a caregiver to my elderly parents).  Once I was admitted, they did all kinds of blood work, and took me off all meds.  My hematologist felt the agranulocytosis was due to my being on the bipolar med Lamictal for the last month.  Once I was discharged, I needed to continue going to the hematologist until my blood returned fully to normal.  This is when I first tested positive for Sjogren's.  One of my subsequent rheumys said they felt that this trauma to my system was what led me to have Sjogren's.   I also had a hysterectomy about 9 years earlier (my mom said she felt I was never the same after this).  For three weeks after leaving the hospital, I ran a low grade fever every night, returning to the ER numerous times.  Finally they re-admitted me, and I was in for a week. It was the worst I've ever felt in my life...I feel it's the closest I ever was to death, and I've had a few near misses.  My best friend is an intensive care nurse, & she said they were "slamming me" with heavy duty antibiotics.  It seemed I had contracted e coli during my hospital stay (it happened to me again in 2011 after a bladder hemorrhage).  I was healthy enough as a kid until I had mono in college.  I got VERY sick with that and lost a LOT of weight.  Despite having chicken pox as a child, I also came down with shingles in my 40's (again, got VERY sick).  I have had way more than my share of stress as well.  I was in a very unhealthy marriage.  My mom, a therapist, once said, "the stress of a marriage is played out upon the woman's body."  Finally, here is a (VERY LONG!!) article about EBV.  It's worth a skim-through, because the writer definitely believes that there's a connection between EBR & AI stuff.
goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/
« Last Edit: February 01, 2017, 03:41:03 AM by Linda196 »
Agranulocytosis in '07 led to Sjogren's diagnosis; SS-A = >8.0; SS-B = 3.7; ANA Positive; ANA Titer = 1:32; Pattern: Speckled; RF = 132 IU/ML; Hashimoto's, fibromyalgia; IBS; GERD; on Gabapentin, Levothyroxine, Vitamin D + others

wendyoh

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #56 on: February 01, 2017, 08:39:59 AM »
What a string of replies!!  Very interesting to read everyone's experience.  My heart goes out to all of you.  In 2007, I was hospitalized for a week with agranulocytosis.  My white blood cell count was almost nothing, to the point that they gave me a bone marrow biopsy in the ER, thinking I had leukemia.  I went in with a really bad sore throat that came on suddenly, and only went to the ER because it was a weekend, and I wanted to get on an antibiotic quickly (I was a caregiver to my elderly parents).  Once I was admitted, they did all kinds of blood work, and took me off all meds.  My hematologist felt the agranulocytosis was due to my being on the bipolar med Lamictal for the last month.  Once I was discharged, I needed to continue going to the hematologist until my blood returned fully to normal.  This is when I first tested positive for Sjogren's.  One of my subsequent rheumys said they felt that this trauma to my system was what led me to have Sjogren's.   I also had a hysterectomy about 9 years earlier (my mom said she felt I was never the same after this).  For three weeks after leaving the hospital, I ran a low grade fever every night, returning to the ER numerous times.  Finally they re-admitted me, and I was in for a week. It was the worst I've ever felt in my life...I feel it's the closest I ever was to death, and I've had a few near misses.  My best friend is an intensive care nurse, & she said they were "slamming me" with heavy duty antibiotics.  It seemed I had contracted e coli during my hospital stay (it happened to me again in 2011 after a bladder hemorrhage).  I was healthy enough as a kid until I had mono in college.  I got VERY sick with that and lost a LOT of weight.  Despite having chicken pox as a child, I also came down with shingles in my 40's (again, got VERY sick).  I have had way more than my share of stress as well.  I was in a very unhealthy marriage.  My mom, a therapist, once said, "the stress of a marriage is played out upon the woman's body."  Finally, here is a (VERY LONG!!) article about EBV.  It's worth a skim-through, because the writer definitely believes that there's a connection between EBR & AI stuff.
goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/

that is an interesting article, the intersect between objective science and the, I can't even think of right word to capture, but new age/alternative/holistic.......has always been an interesting line for me, to try to understand where "truth" lies....but always see some value in aspects of both
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

LilliaT

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #57 on: February 01, 2017, 12:13:14 PM »
WhatYouSjo, did you ever end up having that tooth pulled?  I've also had ongoing issues with tooth that has a root canal, and I was told that I needed to decide whether to try to have the root canal redone or to have the tooth extracted and replaced with an implant.  As I've learned more about the effect that dental issues can have on the rest of the body, I've been wondering if it has anything to do with my Sjogren's-like symptoms.

Also, could I ask what the issues were with your root canals?  Did you have ongoing pain and discomfort afterward?  My root canal was about 8 years ago in a lower back molar.  There is some general discomfort (like a faint toothache), as well as occasional pain from warm foods/drinks.  The dentist and endodontist can't see any obvious cause for the discomfort  -- no infection or cracking -- although they say the root canal was badly done.

The upsetting thing is that, apparently, the tooth never needed the root canal in the first place.  I was seeing a new dentist about  10 years ago, and he convinced me that 2 teeth with old fillings needed root canals.  He did them himself (using what I later learned were outdated methods) and botched both.  (He later became infamous in the area for pushing unnecessary procedures on patients, and eventually went out of business.)  Since then, a couple of dentists have looked at my records from the time and questioned why the root canals were ever done -- because my teeth had been in great shape, there was no pain, and no sign of infection on the x-rays.  In trying to pad his wallet, the guy left me (and probably dozens of other patients) with years of dental 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.

wendyoh

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #58 on: February 01, 2017, 01:04:06 PM »
Lillia--really sorry to hear about your dental trauma. I am going to jump and share that I have had 3 root canals in the last 12 years and the first one took it seems, and he did use a little bit of older method but did it competently (it was the puff of smoke method) the 2nd two failed terribly.........and I got them both pulled and that was the solution. One of them however is starting to worry me a year later, there is either something wrong with the site of cavitation or a tooth next to the gap is cracked or not well. Its a 2nd to last molar and I didn't get implant or bridge because I want less involvement with dentists but now that am having pain there and in another tooth with old crown my hand is being forced to start figuring it out. 6 months ago I would have said just pull them and forget root canals--and I still doubt I will do root can again--but I am seeing that even once its pulled its not nec over...........
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

Nymph

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Re: what do you think might have "triggered" Sjogren's for you?
« Reply #59 on: February 03, 2017, 02:51:23 AM »
I am glad that this topic has reappeared, because it brought a revelation to me. My health started going downhill and I developed some of my autonomic symptoms, then some dryness, during my early 20s. I got sick at 21 with an infection that went undiagnosed. I developed a case of secondary lymphadonitis and ended up with some strong antibiotics for that. I was quite sick for about two months with another month of recovery time. Then I started college in Arizona and started having bothersome symptoms that I now associate with Sjogren's.

My revelation is that the initial infection was probably EBV. It fits the symptoms. And it makes sense with the known long-term complications and potential of EBV to set off autoimmunity. I don't know why I find this satisfying but it is.
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot