Author Topic: Question: Sjogren's that came on very suddenly?  (Read 3713 times)

jajo

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Question: Sjogren's that came on very suddenly?
« on: August 27, 2011, 05:40:37 PM »
Hi all,

I was wondering if others had a similar experience as I had.  I am 32 years old and was in great health (I ran half-marathons and was eating well).  I didn't notice any of the symptoms of Sjogren's.  In mid-July I was prescribed an antibiotic, Flagyl, for BV (which isn't really an infection, just an imbalance of the normal "flora").  I took one pill and started experiencing severe stomach cramping and lost all my appetite.  I went to the doctor and they took me off of it, because I was reacting so badly.  A day later my mouth and throat dried up and I thought I was having some sort of allergic reaction to the med.  The doctor thought is was reaction to the med and said it should subside in a few days.  The dry mouth and throat continued and then I started having all kinds of other symptoms, which I know now was Sjogren's, like weakness and fatigue.  At one point I was treated for dehydration, because that's what they thought was going on.  Finally, one of the doctors did a test for Sjogren's, because of my dry mouth, stomach problems, and weakness.  I also started experiencing dry eyes, nose, and skin all of a sudden.  I have even had neuropathy off and on.  I ended up missing a lot of work, because of feeling awful. I have never experienced any of these symptoms before.  My ANA panel came back and I was positive for both SSa and SSb.  I did see a rheumatologist last week, and he told me it's rare to have it come on all of a sudden and is also rare to be positive on both SSa and SSb tests.  If anyone has a similar story, I'd be interested to hear it and what the course of your illness is, not that it will necessarily tell me the course of mine, I realize.  I just feel knocked over by this thing! 

Danielle28

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Re: Question: Sjogren's that came on very suddenly?
« Reply #1 on: August 27, 2011, 06:20:50 PM »
Jajo,
My onset was rapid. I've had stomach problems for a year and had been having some headaches. However, I was at the gym every day. I'd volunteer in my son's class, I was babysitting, going to college full-time, keeping a clean home, and functioning quite well.

Then in April, I felt like I was getting a bug, and I was in bed for a few weeks...  Then one day i was feeling a little better, went to the mall and had some major neurological things happen (long story)-  anyway, went to the PCP, he ordered blood work, showed positive ANA, he told me he thought I had lupus. 

Now, here I am 4 months later and I have just one of the antibodies but also anitphospholipid, and arthritis, all out of the blue.  I am better than I have been but I am not anywhere near where I was. I can barely do a load of laundry. Making scrambled eggs leaves my arms screaming.  Just getting my boys to and from school proves to be all I can do on some days.

I'm not in exactly the same boat but I really didn't expect this to be what was wrong, I thought thyroid or blood sugar. Not auto-immune problems. 

I'm 28 (on the younger end for sjogren's too).  Now looking back, I'm wondering if I haven't had small "flare ups" over the last few years but nothing like what I've been experiencing.

Joe S.

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Re: Question: Sjogren's that came on very suddenly?
« Reply #2 on: August 27, 2011, 07:03:28 PM »
Jajo, welcome to the forum. You will find a lot of good information here.

As to the sudden onset, I can not say much. I think it may depend on what you believe is the cause of Sjogren's.
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anita

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Re: Question: Sjogren's that came on very suddenly?
« Reply #3 on: August 27, 2011, 08:31:12 PM »
I disagree with your doctor about sudden onset and surprised he doesn't know.  It is quite common for autoimmune disease to lay dormant until something (infection, trauma, etc) sets the disease into motion.   

I may have had some slight symptoms in my early years, but nothing bothersome.  I too was very active (off road biking the week before I got sick) until 1996 when I got an upper respiratory infection.  All heck broke loose and I was inundated with neuro, dryness, and cardiac symptoms.  It's now 2011 and I have been disabled since 1996.  My story (the very short version) is like many others, where something sets the wheels in motion.

BTW, welcome to Sjogren's World.
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Meld256

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Re: Question: Sjogren's that came on very suddenly?
« Reply #4 on: August 27, 2011, 11:29:55 PM »
Hi jajo,

Please let me Welcome to Sjogren's World!  ;) 

You've come to the right place for information, encouragement and some friendly people. I hope you'll find the site and forum just as helpful as it has been to me and many others.

Your story certainly does seem like a very sudden onset of symptoms. You should hear from others, like Danielle, who had things come on suddenly, too.  And then there are those of us who had symptoms for years but no one could put it all together.  For me, some symptoms came on suddenly, and then after a bad bought with a cold/sinus infection all the eye, mouth, extreme fatigue and joint pain began.

You are exactly right that no one's course of illness is the same. Some have only mild problems, and stay that way. Some have a few more, come and go and get progressively worse, or get better.  A few do have very serious issues.
I can tell you there are treatments and lifestyle changes to let you live your best life.  It can be tough to be handed a diagnosis, but coming here will be of great help.  We are here with you, and you are not alone.

Please keep posting.  We look forward to hearing more from you.  :)
Melinda

Linda196

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Re: Question: Sjogren's that came on very suddenly?
« Reply #5 on: August 28, 2011, 11:04:17 AM »
I would just like to point out that antibodies take time to develop, so it may be more accurate to say your symptoms came on very suddenly, not the disease itself. In order for the antibodies to build up, your immune system must have been in "attack mode" for at least a little while, probably the trauma of the Bacterial Vaginosis and antibiotic treatment triggered a flare which made the symptoms noticeable.
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Pisces24

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Re: Question: Sjogren's that came on very suddenly?
« Reply #6 on: August 28, 2011, 02:35:20 PM »
I agree that it can seem to come on sudden. We all understand it is a heck of a lot to take in when you get positively diagnosed with something.    There a a lot of "small symptoms" with SJS that we really just ignore or attribute it to something else. Tiredness, aches & pains, dryness, rashes, etc we just blame it on something else until 1) it doesn't go away 2)it gets so bad you see the dr or 3) dr sends you to a specialist.

I was 3) as acc: to my gp my bloodwork was way out of wack and 5-7 sinus/throat infections per year was not normal. After I did finally get diagnosed with Sjogrens, I started thinking about the other stuff/illnesses I had in the past and it kinda added up. Like 5 teeth cavities my whole life up until 10 yrs ago and then 3 cavities per year - dentist thought I didn't brush/floss, etc..

As to the rarity of having ANA, SS-A and SS-B all high.  ::) I don't think so.  My ANA is so high they quit counting and I have very high SS-A & SS-B.  Sjogrens affects everyone differently as I don't have the bad symptoms a lot on this board have and hold down a full time (& overtime) job. I have a bunch of stuff they are watching/monitoring and so far have stayed close to abnormally normal for me. I learned to feel my fatigue coming on, so I can usually avert "hitting the wall" with it. I did have a couple weeks I ignored it and had to take 2 days off cause I was so durn tired and slept most of those days and nights.

I go to a research/teaching hospital and it was an immunologist who diagnosed me. Frankly I don't get much out of seeing my rheumogologist at all. I get more from my immunologist. I would recommend a research/teaching hospital for your specialists if you have one available that works for you travel wise. I got a run around for 6 yrs w/individual specialists.

Welcome to the group. We are all a bunch of nice folks who understand the frustrations, stress, etc associated with this disease.  We do perservere.

Katybarstool

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Re: Question: Sjogren's that came on very suddenly?
« Reply #7 on: August 28, 2011, 03:39:22 PM »
The Flagyl rings bells for me. I suspect I have had SJS since my teens, but when I was 48 I got an infection after my total abdominal hysterectomy. The first dose of Flagyl caused all my joints to swell up, and I felt really unwell. Although the Flagyl was replaced with something else, my health has never been the same since.

Now, as someone else has already said, the auto-immune conditions can be triggered by trauma, and the hysterectomy was an emergency one, and was certainly traumatic, so maybe that caused lthe SJS to reveal itself.

Interestingly, our youngest son was given Flagyl for a dental abscess. It was around the same time he was also being treated with Roaccutane for his severe acne. He was 16, and his health nose-dived from that point. I suspect he may develop SJS, but at the moment he is diagnosed with Fibromyalgia and Raynauds.

I know that Flagyl is a very effective drug, but it scares the life out of me now.

Kathyx

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Re: Question: Sjogren's that came on very suddenly?
« Reply #8 on: August 29, 2011, 07:06:50 AM »
My symptoms seem to be getting worse quickly too.  :( Like others have said, I suspect I've had SS for a long time, but wasn't bothered enough by symptoms to ever think anything was actually wrong, but in the past few months, not only has my dry mouth gotten worse, but recently my eyes have gotten drier and have started burning. My joint pain has gotten worse, and my fatigue is just overwhelming at times. I hope the Plaquenil starts to help with at least the joint pain and fatigue soon.

Best of luck to you,
Sharyn
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jazzlover

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Re: Question: Sjogren's that came on very suddenly?
« Reply #9 on: August 29, 2011, 05:23:59 PM »
You need to research Lyme disease. Flagyl is one of the meds used to treat the cyst form of the spirochetes. What happened to you may have been a Jarisch-Herxheimer reaction. Do not rest until you are evaluated by a specialist dealing with Lyme disease. Other drs are likely to run tests at labs which will not find it....unless you are lucky.

a good lab for testing is www.Igenex.com  .. I would suggest test #188 and 189.

PS Lyme can cause auto-immune problems. It did that to me. Lyme can lie dormant for years, only to surface when the body is in a trauma of some sort. ( or if you take antibiotics used for Lyme .. not knowing you have it)
« Last Edit: August 29, 2011, 05:27:28 PM by jazzlover »
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

jazzlover

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Re: Question: Sjogren's that came on very suddenly?
« Reply #10 on: August 30, 2011, 01:39:06 PM »
up
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

CathyO

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Re: Question: Sjogren's that came on very suddenly?
« Reply #11 on: August 31, 2011, 11:00:58 PM »
I took Flagyl for an intestinal infection and got diagnosed with Sjogrens later.

LizPetillo

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Re: Question: Sjogren's that came on very suddenly?
« Reply #12 on: September 01, 2011, 06:15:14 AM »
Mine flared up huge ... all of a sudden ... overnight in fact ... second day on an antibiotic for my lungs (chest cold turned pneumonia).

I had some symptoms prior to that for a year or two but they were not anything at all that made me go screaming to a doctor.  I'm sure I had the sjogrens then, but it was so mild that it wasn't in need of attention (and I had never heard of it back then to even consider asking about it)

But then ... all of a sudden ... WHAM ... I got nailed.  And life hasn't been the same since.

Oh ... and I was mistreated and misdiagnosed just like you .. they gave me horrid drugs with horrid side effects - treating me for 'thrush' which I didn't have.  It was the worst experience of my life.  Worse than when I had a kidney stone .. and you know THAT is heck.


Reabee2

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Re: Question: Sjogren's that came on very suddenly?
« Reply #13 on: September 02, 2011, 11:40:32 AM »
My Sjogren's came on overnight basically.  This happened to me last year at 24.  I was running 5-10 miles everyday and was a full time student in law school in great health. I had been on a trip to Europe last summer and I came home and the next day I woke up and I couldn't get out of bed, everything hurt, I had terrible brain fog, the muscles in my neck and my upper back hurt so much I couldn't even move my head.  At first I figured that I had picked up a nasty bug on the plane or on the cruise ship, but after a few weeks nothing had changed. 

I was originally diagnosed with lyme disease, and given a course of antibiotics.  I had such a severe adverse reaction to the antibiotics and they seemed to make everything a million times worse.  After over a year and many different doctors I was diagnosed with Sjogren's. 

The onset is still puzzling since it was so sudden, one day I was perfectly fine and the next I was terribly ill.  My rheumatologist said that its possible that I did pick up a bug on my trip and that the reaction my immune system had to trying to fight the bug sort of triggered a flare of Sjogren's. 

Meld256

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Re: Question: Sjogren's that came on very suddenly?
« Reply #14 on: September 03, 2011, 12:00:21 AM »
I also had some sudden onset of symptoms, and it can really come as a shock.  As Linda points out, our disease was there already, it's a matter of how and when symptoms appear. 

I look at it sort as if it's been there lurking, just waiting for a stressor of some kind to bring it to the forefront. I believe research is still finding things such as genes we are born with and how that plays a part, and other ways the disease is triggered.