Author Topic: Early Symptoms of Sjogrens?  (Read 9430 times)

take5

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Early Symptoms of Sjogrens?
« on: April 10, 2011, 03:01:11 PM »
Hello. This is my first post. I have no diagnosis, but have had symptoms of sinusitis and allergic rhinitis for years, and non-stop sinusitis since July of 2011. I was wondering if it is possible to have iffy or intermittent symptoms of Sjogren's  before actually having diagnosable symptoms.

Sometimes I have dry eyes, and my saliva is foamy and has changed, but my mouth is still wet. Partly when I spit, I am spitting postnasal drainage. My spit is more stringy than wet.

I have fairly debilitating fatigue and constant issues with sinuses and postnasal drip. I caught a cold 5 weeks ago, and now I have a bronchitis and (I think) costochondritits that I can't kick. Spitting up little globs of gluey sputum. Painful to cough. When I cut onions, my left eye gets teary and my right eye doesn't seem to as much, though sometimes my dry eye symptoms seem to vanish. 

I definitely have got a toe in auto-immune stuff. I just turned 50, and everything all seemed to go to pot at the same time, concurrent with menopause.

I've had a high ANA titer for 20 years and a diagnosis of Raynaud's since that time. In March of 2010 I felt vibrations in my muscles and numbness in extremities; neurology diagnostics did not reveal anything and I was referred to rheumatologist. Vitamin D and fish oil cleared those symptoms up.

Allergy testing in October 2011 revealed allergies to mold and dust mites. I have three cats which could be causing profusion of dust mites. I work full-time, and am so exhausted that I can barely do anything on the weekends, and I don't vacuum enough to keep the dust mites/dust at bay.

The allergy testing seemed to have started an inflammatory response--I broke out into a rash all over chest; it moved to my back and then stomach. Stayed for weeks. Rheumatologist put me on 14 days of prednisone. Rash mostly cleared up. Dermatological biopsy showed rash consistent with drug-induced rash. (I'd been on extra strength Mucinex-D).

Rheumatologist bloodwork found: SCL 70: pos, ANA: pos, and some smooth muscle tissue breaking down. Kidneys not breaking down, no RA. All other bloodwork (sed rate, total blood count) normal. Vitamin D level was normal, but very low.

I don't think I have signs of skin scleroderma, though dry skin runs in my family. I can only use a few hypo-allergenic products (cera ve, for example). I do have weird little bumps on forehead that are not a rash or pimples; they are under the skin. Dermatologist didn't make anything of them.

Holistic doc put me on Cipro to kill off bad gut bacteria. Rash came back full force. Rash seems to be healing (rough skin bumps), but can be triggered by certain foods or supplements (still trying to figure out what). Dairy-free, wheat-free, sugar free diet seems to help overall health, but sinus and postnasal drip issues are relentless. Gut is feeling much better with addition of probiotics.

So, after all that history, I'd better restate my original question--is it possible to have symptoms leading to Sjogren's? If you have an early diagnosis, do any medications help to keep symptoms from getting worse? At my last visit to my rheumatologist, she said I could have a lip biopsy done, but even if we got a positive Sjogren's diagnosis, she would not prescribe any preventative medication.

Any words of wisdom? Much appreciated! Thank you for reading. I never thought I'd be "one of those old people" hyperfocusing on health issues. Now that my health is compromised, that's all I think of!




Pisces24

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Re: Early Symptoms of Sjogrens?
« Reply #1 on: April 10, 2011, 03:29:52 PM »
Well here are some of my early signs.
1) Hashimotos when I was age 21.

2) When I got allergic to my contacts. My eye doctor who practiced for over 20 yrs had never had that happen to a patient before.  He didn't give me a Schirmer's test at the time. When I did get the Schermer's test back in 2009, I scored and 1 & 0.

3) Also I was getting chronic sinus infections that hit me like a ton of bricks I'd get 5-8 per year which my dr said was very abnormal.

I've had other "odd" things come up prior to my SJS diagnosis that I look back now and wonder if it was Sjogrens related. Just really don't know.

take5

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Re: Early Symptoms of Sjogrens?
« Reply #2 on: April 10, 2011, 03:31:58 PM »
Thank you for your thoughts. I'm unfamiliar with Hashimoto's; will look up. Best wishes to you.

Patze

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Re: Early Symptoms of Sjogrens?
« Reply #3 on: April 10, 2011, 04:33:54 PM »
Hi Take5,

Let me also welcome you to the SJS World and family!  Please continue to look around as there are scads of topics and mountains of information to peruse.

Like Pisces, my thyroid started to slow down slowly, but steadily to the point that my hair was falling out, gaining wait without a cause, exhaustion to no end (could pick my eyebrows out with my fingers; it was not pretty).  During all of these, my TSH never went above the GP's rating of .05-5.50 (mine went up to 4.96 as the highest).  Finally got to see an endo and the rest is history.

I too get the "foamy" saliva, and though the mouth is still wet, it's getting dryer for sure.

My eyes have been a bit goofy since this whole mess started, and I have "dry eye" because of MGD.  When they are tested, the driest that they have been were 0 in the left and 3 in the right and the closest to normal has been 4-5 in the left and 7-8 in the right  (with MGD, anything less than 10 is considered dry & 12 and above is normal; my eyes are pretty much plugged (one likes to come out every 2-4 weeks ::))).

On top of all of this mess, my blood work has always been sero negative (except for the ESR).

Again, welcome and I hope that you get an answer soon!

Take care of yourself -

Patze
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take5

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Re: Early Symptoms of Sjogrens?
« Reply #4 on: April 11, 2011, 06:59:48 PM »
Patze,

Thank you for the welcome. I'm sorry; I don't know what "MGD" is. I will Google it!

It looks like people can have so many variations in blood results, and a huge variety of ways that illness may be expressed in symptoms.

I've read that some practitioners think that ALL of this stuff may be a result of inflammation. Have you ever heard that?

Thank you so much for sharing your experience and thoughts. It helps to know there are folks trying to help think through the symptoms, especially when there are sometimes a lot of symptoms and not a lot of answers.

Sometimes I think I've got something scary. Other times I think I just need to get rid of my cats!

Take5

take5

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Re: Early Symptoms of Sjogrens?
« Reply #5 on: April 11, 2011, 07:13:37 PM »
Patze and anyone who wants a laugh,

Ha! I Googled "MGD," and the first listing was for "Miller Genuine Draft"! That was good for a giggle.

My second attempt at deciphering MGD has led to "Meibomian Gland Dysfunction," which sounds a little like Star Trek, as in, "Scottie, beam me up! The Meibomians are after me!" Since this definition is about dry eyes (the gland dysfunction, not the Star Trek interpretation), I'm guessing it's the right one?

As you can see, brain fog occasionally slides into slap-happy brain for me.  :D No disrespect meant here; I just have to laugh to keep me from being too OCD in trying to diagnose myself.

Thanks, again.

Skylar

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Re: Early Symptoms of Sjogrens?
« Reply #6 on: April 12, 2011, 05:47:04 AM »
Holistic doc put me on Cipro to kill off bad gut bacteria.

So, after all that history, I'd better restate my original question--is it possible to have symptoms leading to Sjogren's? If you have an early diagnosis, do any medications help to keep symptoms from getting worse? At my last visit to my rheumatologist, she said I could have a lip biopsy done, but even if we got a positive Sjogren's diagnosis, she would not prescribe any preventative medication.

Any words of wisdom? Much appreciated! Thank you for reading. I never thought I'd be "one of those old people" hyperfocusing on health issues. Now that my health is compromised, that's all I think of!

Hi Take 5, sorry to read about your health problems.

First, I want to warn you and others not to take Cipro or other antibiotics in the special class of fluoroquinolones. You can read about them here in http://en.wikipedia.org/wiki/Ciprofloxacin and here: http://en.wikipedia.org/wiki/Fluoroquinolone. Because DH and I are medical doctors (I do cancer research, don't practice), we've gotten several warning letters from Bayer on this drug. Your Holistic doc should have gotten those letters too.

It's a tough call when to medicate - you have to balance diagnosis, degree of symptoms etc. versus choice of medication and it's effectiveness and side effects. Sadly there are no magic bullets for chronic diseases. Logically, yes you do have symptoms prior to a diagnosis of Sjogren's however many of them are non-specific meaning they could be related to other processes including normal aging. It might help to get a second or even third Rheumatologist's opinion as to whether you should begin treatment now. BTW, I decided not to have the lip biopsy - it's a personal choice. You might want to further research lip biopsies.

Scottietottie

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Re: Early Symptoms of Sjogrens?
« Reply #7 on: April 12, 2011, 09:14:42 AM »
Hi Take5  :)

Welcome to Sjogren's world. Sjogren's is very individual and symptoms can come and go.

Take care - Scottie  :)
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cyates

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Re: Early Symptoms of Sjogrens?
« Reply #8 on: April 12, 2011, 10:54:34 AM »
Hi Take5 - As well as showing the positive ANA factor, did the Rheumatologist check to see if you are positive for the SS-A and SS-B antibodies? I was just recently diagnosed and my rheumatologist said that positive for SS-B typically points to Sjogrens.

take5

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Re: Early Symptoms of Sjogrens?
« Reply #9 on: April 12, 2011, 01:48:04 PM »
Thanks, Skylar, cyates, and Scottie, for responding.

About the Cipro--I read over the  Wikipedia link, and there are many possible adverse side affects. Are there any particular ones for whom AI folks are more at risk? I worry about the neuropathy and neuromuscular effects.

Worse than the Cipro, I was later prescribed Levaquin for bronchitis by the same doc (and it was also recommended as safe by my best friend's doctor-husband). After being on it for five days, I mentioned it to my sister, a physical therapist, and she begged me to stop taking it. She has a friend who is an occupational therapist who immediately developed pervasive rheumatoid arthritis everywhere--and she is now disabled. After the Levaquin, I have had what I believe is costochondritis, which developed concurrent to a lot of coughing with bronchitis. I hope that it is not Levaquin related.

It seems docs are still prescribing Levquin without fully understanding the prevalence of the side effects. And Cipro is prescribed all the time.

If anyone is on Levaquin, here is a link to read:

http://www.medicationsense.com/articles/may_aug_05/warning_antibiotics_052205.html

I did not know Cipro was as bad as Levaquin. The Cipro did seem to help my gut, which is counterintuitive, since antibiotics usually cause gastric distress, but overall, the antibiotics did not make me feel good. I lasted ten days before I quit. I have felt much better overall after taking probiotics. Upper respiratory issues still unyielding.

Skylar, were there any particular side effects from Cipro that I should be looking for? Or, are they just generally a bad idea for people dealing with autoimmune issues?

Thanks, everyone.

Skylar

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Re: Early Symptoms of Sjogrens?
« Reply #10 on: April 12, 2011, 07:59:02 PM »
I don't know of anything specific to AI - and to be honest when they send those letters it's a fat envelope full sheets of paper filled with tiny font LOL - I don't read them beyond the first few lines in bold. I'm sorry your Dr. prescribed these medications for you - they do have their place but not routine. There is research showing antibiotics having an anti-inflammatory affect - this is outside my area of knowledge.

Joe S.

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Re: Early Symptoms of Sjogrens?
« Reply #11 on: April 13, 2011, 02:19:35 AM »
? Dry eye, nose, mouth, skin, and A$$? but not in any order. Most can trace some of these symptoms to our youth.

I lived on Sudafed for months in high school as a test subject for the drug. Severe Visual and aural migraines were common during that time with sudden onset. Normal sleep was 4-6 hours. I could get by on much less if I needed to. Some symptoms like dry mouth went back to grade school. I was told that I was not drinking enough water. Intestinal constipation and severe cramping took me to the ER in high school on more than one occasion. No ER to go to when you are camping as a Boy Scout with 50 miles to the nearest road. Must remember to breathe.
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Patze

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Re: Early Symptoms of Sjogrens?
« Reply #12 on: April 13, 2011, 08:09:14 AM »
Hi Take5,

I'm sorry to take so long getting back to you, and yep, MGD is not "Miller Genuine Draft", but I sure wish it was (at least it would be fun having! ;) :D Just teasing).  My peepers are so dry lately that the plugs are all rubbing my eyes and that's a whole 'nother mess.  Have you seen an opthamologist about your eyes yet? 

Take care of yourself -

Patze
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