Hi everyone, I have joined not long ago, have not yet been diagnosed, although after being tested for everything under the sun and everything being negative, there's not much left!
I wanted ask your personal experience regarding the onset of Sjogren. I felt completely normal in December, a part form a one sided sinusitis; I could eat, didn't have any problem with my eyes whatsoever.
Now, only 2 and a half months later, I live by my humidifier, artificial tears always by my side, I can't eat bread, pasta or anything that is relatively dry without drinking, my vagina is almost like the Sahara desert and I'm terrified of going anywhere where there's air conditioning!
I am personally convinced this is Sjogren and I'm fighting to get it diagnosed, but is it normal to have such rapid onset?
Could I have missed the signs for a very long time?
I'd like to hear your experiences, because I don't know what to think anymore, as I am sieronegative for SSa, SSb, ANA, ENA etc, which I know doesn't mean much in itself, but the rapid onset makes me think it could be something else.
Also, I don't have any muscle or joint pain, neither I feel fatigued...have you experienced this kind of symptoms before the dryness or after, if ever?
Thanks to anyone who will take time to answer my many questions, which I know you have probably answered a thousand times already...
Hi Valentina :)
You could be having a 'flare'. A flare can be short lived - or it can go on for months and it's unpredictable. Flares do usually settle down again though so hang in there.
Usually SjS is slowly progressive but it's also very individual and doesn't seem to 'follow the rules'.
Take care - Scottie :)
Hi, Valetina. While it seems everyone has a different story on how they began with Sjogrens' symptoms. I had a very sudden onset. My eyes and mouth literally went very dry overnight. Also, had joint and muscle pain, neuropathy in my feet and a lot of anxiety and sudden onset depression. Now, over two years later the symptoms that are most prominent for me are dry eyes, mouth, fatigue and memory issues.
Anna
Valentina,
You might be in what was told to me by a rheumy as sub-clinical. Meaning you have the symptoms, but your tests are not yet showing anything yet. I think mine developed slowly. At age 26, in 1996, it was accidently discovered that I had a slightly high ANA, but nothing. I get tested for RA and Lupuss, but nothing showed up, I don't think they tested for Sjogrens since, I didn't have dry eye or mouth. The docs told me to get tested every couple of years just be safe. I did and nothing showed, so I stopped. In 2003, at age 33, I started developing the dry eyes and dry mouth very suttlely that I didn't notice it. But my teeth started falling apart and I couldn't figure out why. In 2008, things went full blown. Now here I am with extremely dry eyes/mouth, fibromylagia and no positive tests. Sometimes I sit around and pray for positive tests, just so the docs in my town will treat me. I am going to Johns Hopkins.
I believe mine has progressed gradually.
Starting with Paratid issues. Dry mouth and eyes have creeped up on me. I am 53, I was DX in 3/07 Positive to RA factor. Tested strongly positive to SJS.
As Scottie says it is very unpredictable and varies so much in all of us. Flares come and go and attack in so many different areas, sometimes it is so difficult to determine, what is an aging process and what just might just be unrelated all together.
In my opinion SJS aggravates so many body complication that might have presented any way. ????
Blessings Kimbo
Mine also has had a slow progression to dryness but I've had other autoimmune stuff going on for 25+ years so the Sjogrens/sicca is secondary to the other. The 'other' hasn't shown up positive as yet although one factor pointed in the Lupus area then disappeared again!!!! Weird ::) Previous to this I was diagnosed with Chronic Fatigue Syndrome which is a neuroimmune condition.
Lesley (New Zealand)
Thanks everyone. Lesley, I too had CFS. There is definitely something wrong in the way or immune system respond to threats...
If one has the clinical symptoms, diagnosed dry eyes and mouth, but is sieronegative and has a negative biopsy, is there a chance one will get treated?
Does one get diagnosed with SICCA instead?
I'm still trying to clarify my thoughts and information, so that i will e able to get some sort of treatment sorted straight away... ;D
Have a lovely Sunday everyone!
Love
Valentina
That's how I am supposedly diagnosed. I am treated for dry eyes (eye drops, Restasis), dry mouth (Biotene), and skin issues, and other symptoms as they arise. Two local rheaumies told me there was nothing they could do for me until my tests started showing abnormal numbers. I just wonder if my sypmptoms would be somewhat reduced if I was to be on Plaqeniel?
Thanks Wynter...how long have you had your symptoms??
It sounds like a nightmare, same symptoms but not detectable changes tests!
Love
Valentina
My Mayo doctors said, along with other rheumatologists that SJS can be positively diagnosed with a lip biopsy. I have had 2 at Mayo. The first one they did did not get enough salivary gland tissue to test, so repeated another one the next day on the other side of inside-lip. The results was positive for inflamatory lymphocytic cells, a grade 3 of 4, so possible SJS, but not at a 4 of 4 which would be positively SJS.
Now I am may be undergoing another lip biopsy to try to determine again if SJS since I have so many continual neuro symptoms with it and have for years. Just developed the dry eyes in last year of total of 11 years of waxing / waning relapsing neurological deficits. SJS was not even considered until Mayo suggested it 1-2 yr.s ago. It is worth asking about a lip biopsy, (only major hospitals will do them- so smaller doc. offices may disregard the suggestion), to see if you can get more diagnostic test results in favor of SJS so you and your doc. know what you're dealing with.
JMO,
Karin
3 lip biopsies - you are brave - I had 2 and would avoid a third - I still occasionally feel the first 2
How did your lip biopsies come out?
Karin
Wow, three tests. I couldn't bear it. For mine, I don't think the doc took enough tissue. I am not having another.