Author Topic: sudden onset of sjogren's symptoms?  (Read 2460 times)

rpx908

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sudden onset of sjogren's symptoms?
« on: April 30, 2017, 10:51:14 AM »
Can Sjogren's symptoms appear all of a sudden and become worse almost overnight or within a couple of days? My friend developed the symptoms and they have become extremely worse in the past couple of weeks.

From Feb 1 for 8 weeks:
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She never had any dry mouth/dry eyes problems ever. It all started in the first week of February with dry mouth feeling and it stayed on so for a couple of weeks. A dentist confirmed that there was no saliva and the mouth was dry. Subsequent appointments with oral surgeon led to a suggestion that she had to meet with a rheaumatologist. 

Late March - April 1st week - for two weeks and continuing now:
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During the one month period of waiting to see the Rheam. there was a flu-like or viral attack (fever, cough, head-ache) that lasted for a week, and the sjogren's like symptoms became worse almost overnight.  Wacky blood pressure (like 190/100, 170/90, 160/90, strangely diastolic range was smaller than the systolic range). 

The rheaumatologist did a few tests (SS-A, SS-B - both came negative, ANA, RF not done) and asked to find another one that specializes in Sjogren's as that seems like the possibility. 

April 3rd week:
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Dry eyes noticed for the first time, almost unable to open the eyes in the morning. A test confirmed that the conjuctiva is not producing some substance at all, so the tears are practically dilute and are not providing the moisture essential for the eyes.

April 30 - As of this morning:
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This morning, she started seeing flashes of lights.


In summary, all Sjogren's symptoms appeared and stayed for two months, went to an extreme level over the last four weeks, and the symptoms are now expanding.

It has been very scary and there is a lot of fear that this could lead to a loss of vision, and cognitive failures very quickly even before a qualified rheaumatologist becomes available for additional investigation and diagnosis.  As of now, there is NO formal diagnosis and don't even have an appointment with any Rheam. that knows about Sjogren's. The symptoms are all confirmed. They are pointing to Sjogren's - i.e. . the lab tests confirm that that the mouth and the eyes are indeed dry.

Has anyone experienced such a sudden onset and an even quicker worsening of the symptoms?
Specifically about the flashes of lights: is this a common symptom of Sjogren's? I read about retinal detachment - at what point would one have to go into ER?

Joe S.

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Re: sudden onset of sjogren's symptoms?
« Reply #1 on: April 30, 2017, 03:21:42 PM »
Welcome. of With the onset of Sjogren's there can be many strange effects. It attacks every gland in your body that produces a fluid. When pain comes and it will breath through it do not hold your breath. Do not panic this will make the pain worse. Cognitive Behavior Therapy (CBT) will help you deal with depression and anxiety. "Feeling Good" by David Burns helped me.

The flashing lights indicates an eye doctor appointment. You need a group of doctors, a neurologist, Rheumatologist, Eye doctor, dentist, and a GP. Some add an immunologist. I use alternative therapies to help manage the pain and other challenges.

Some of us had put what we take in our signature area. Before trying anything, check for counter indications, interactions and side effects.

There will be more challenges as time goes on. I am considered sero negative. I was DXd on symptoms not blood work.
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Navigator

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Re: sudden onset of sjogren's symptoms?
« Reply #2 on: May 01, 2017, 05:11:13 AM »
Yes I had a wicked sudden attack with pain primarily so bad that they thought I had brain swelling. I agree with Joe....go to an ophthalmologist....an MD... and have the eyes checked.  My symptoms eventually went away and then a rheum. diagnosed SJS.
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long time dry

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Re: sudden onset of sjogren's symptoms?
« Reply #3 on: May 01, 2017, 09:46:33 AM »
Anyone seeing flashing lights should see an eye doctor right away.  I had that symptom and didn't realize the extent of variety in flashing lights so I didn't seek treatment as quickly as I should have.  I did have a torn and detaching retina.  The retina surgeon was able to save my sight but he was very concerned about the severity of the situation.  If an immediate appointment with an eye doctor is not available, a trip to the ER is indicated.  Loss of vision and even blindness is the result of not getting a detached retina treated promptly.

DarleneB

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Re: sudden onset of sjogren's symptoms?
« Reply #4 on: May 01, 2017, 06:32:30 PM »
I agree with seeing the opthamologist for the flashing lights..hopefully they offer some answers .....I also tested negative for.the normal testing they do for Sjogrens.  My new rheumatologist ran the early sjogrens syndrome profile blood panel and I was positive on 2/9 of the tests.
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ohiolady

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Re: sudden onset of sjogren's symptoms?
« Reply #5 on: May 04, 2017, 07:35:59 AM »
Yes, my symptoms were sudden and severe.  The first two years were horrible!!  My symptoms have lessened from the early days , of course I take a lot of meds now.  Your friend needs a good Rheumatologist.   

Good luck to your friend.  She and you can learn a lot here.  You can search topics.

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irish

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Re: sudden onset of sjogren's symptoms?
« Reply #6 on: May 04, 2017, 06:45:46 PM »
Go to the doctor-the eye doctor or to an ER--immediately if not sooner. The eyes can be hit very hard and need lots of attention. Irish

vrystaat

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Re: sudden onset of sjogren's symptoms?
« Reply #7 on: May 07, 2017, 01:39:05 PM »
I get really upset when Rheumatologists say that they don't treat SJS. That means they're lazy & don't want to treat this difficult disease. My solution was to go the local University Clinic, and get expert help. SJS can erupt suddenly, and get worse.. Sometimes the disease progresses, in flare-ups or it can get worse and stay that way. I have very painful eyes, and the Opthalmologist treated me with Restasis, and put in punctal eye plugs. For flare ups, I use Ketorolac eye drops for a few days. Steroid eye drops are used if the flare up is severe.
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rpx908

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Re: sudden onset of sjogren's symptoms?
« Reply #8 on: September 19, 2017, 01:12:34 AM »
I am the OP. FWIW, here is the update. My friend that developed the symptoms received no diagnosis of sjogrens, because the tests were all negative SSa, SSb, ANA, and RF. So, mitigating the symptoms was the only option. The ophthalmologist thought the visual flashes were a problem, but not diagnosable enough. So no treatment there. Over the next three months, the symptoms started becoming milder and now they are really mild and manageable.