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Board: Sjögren's Syndrome 08-05-2012, 03:32 PM
Replies: 5
Views: 1,112
Posted By sjogrens
Re: Help - I'm a Newbie

I am young for having this disease, and it can be life changing no doubt. It is scary, and can be overwhelming. My rheumatologist has told me repeatedly that Sjogren's can cause any symptom lupus...
Board: Sjögren's Syndrome 08-05-2012, 03:26 PM
Replies: 8
Views: 1,812
Posted By sjogrens
Re: 'Early' Sjogren's?

SS-A is also positive in other disease processes (e.g., SLE) so even having a positive SS-A and ANA wouldn't definitively mean you have Sjogren's. This is why rheumatologists have to rely on SYMPTOMS...
Board: Sjögren's Syndrome 06-14-2012, 06:55 AM
Replies: 25
Views: 13,112
Posted By sjogrens
Re: Sjogrens and hair loss

I did not have dry eyes or mouth when I was diagnosed last year either. My symptoms were fatigue, hair loss, joint pain and swelling, IBS symptoms and a persistent dry cough but my mouth did not feel...
Board: Sjögren's Syndrome 06-13-2012, 05:47 PM
Replies: 25
Views: 13,112
Posted By sjogrens
Re: Sjogrens and hair loss

Hi - I have had a lot of hair loss as well, and my first diagnosis was Sjogren's. We now think I have an overlap of Sjogren's and lupus, but my rheumatologist told me that hair loss can definitely...
Board: Sjögren's Syndrome 05-09-2012, 11:10 AM
Replies: 1
Views: 1,766
Posted By sjogrens
Re: Sjogrens and nausea, and flare up

Hi! I do get nausea out of nowhere sometimes, as well as dizziness and even bouts of vertigo. My official diagnosis is primary Sjogren's based on bloodwork, but honestly - I fit the profile better...
Board: Lupus 05-05-2012, 01:07 PM
Replies: 6
Views: 1,960
Posted By sjogrens
Re: Feedback needed on ANA/Elisa/DR Opinion.

Sjogren's definitely flares. I was in a horrible flare a month ago that took a steroid shot and six weeks of a combination of anti-inflammatories and pain medication to control. Perhaps seeking a...
Board: Lupus 05-05-2012, 05:54 AM
Replies: 6
Views: 1,960
Posted By sjogrens
Re: Feedback needed on ANA/Elisa/DR Opinion.

Oh, kadedoll, I forgot to mention - like VeeJ said, Plaquenil can take a long time to reach its maximum benefit. It took four or five months before it helped with the joint swelling in my fingers,...
Board: Lupus 05-05-2012, 05:50 AM
Replies: 6
Views: 1,960
Posted By sjogrens
Re: Feedback needed on ANA/Elisa/DR Opinion.

Hi VeeJ, yes I am photosensitive. I don't get severe rashes (thank goodness!) but will get more like "facial flushing" that does resemble a malar rash but goes away within a few hours. What's even...
Board: Lupus 05-04-2012, 06:36 PM
Replies: 6
Views: 1,960
Posted By sjogrens
Re: Feedback needed on ANA/Elisa/DR Opinion.

Actually, it sounds like Sjogren's to me. I was diagnosed with Sjogren's a year ago based off of very similar symptoms (extreme fatigue, joint pain and swelling, hair loss, IBS symptoms, muscle pain,...
Board: Sjögren's Syndrome 05-01-2012, 10:53 AM
Replies: 1
Views: 1,617
Posted By sjogrens
Re: Frustrated with lots of symptoms

Yes, that actually sounds exactly like Sjogren's. In fact, quite a few Sjogren's patients are originally told they have MS due to the fact that Sjogren's can cause neuropathy problems (peripheral...
Board: Sjögren's Syndrome 04-30-2012, 05:13 PM
Replies: 19
Views: 5,682
Posted By sjogrens
Re: Undiagnosed and frustrated

There are sero-negative Sjogren's patients (somewhere between 20 - 30% will not test positive for ANA or SS-A/SS-B). Interestingly, the vast majority of patients with Sjogren's have a positive...
Board: Celiac Disease 04-30-2012, 09:04 AM
Replies: 1
Views: 941
Posted By sjogrens
Re: Celiac diagnosis & the need for biopsy with no/minimal symptoms

My daughter recently tested positive for celiac disease but does have symptoms. We have decided not to pursue a biopsy because I think it's invasive and unnecessary - especially for a young child. So...
Board: Lupus 04-17-2012, 06:10 PM
Replies: 16
Views: 4,323
Posted By sjogrens
Re: Lupus or ??? Pleads help, Anyone with same symptoms and had diagnosis?

Hi Kit, it does sound like something autoimmune is going on - maybe not lupus, but so many AI diseases have overlapping symptoms it can be difficult to tell them apart. I have been officially...
Board: Fibromyalgia 04-14-2012, 07:59 PM
Replies: 8
Views: 1,034
Posted By sjogrens
Re: newbie

My legs are the worst too! I have a connective tissue disease (Sjogren's) that causes painful joints and swelling, but I also have fibro and I think for the past few weeks, they've been fighting each...
Board: Fibromyalgia 04-13-2012, 04:31 AM
Replies: 14
Views: 2,585
Posted By sjogrens
Re: ANA Test

I hope you feel better soon, boobootwo - I have GI issues too - I've heard it's pretty common with Sjogren's. Such a terrible disease.
Board: Fibromyalgia 04-12-2012, 06:45 PM
Replies: 7
Views: 1,307
Posted By sjogrens
Re: results are back

Oh gosh, I would love to just have fibro! Ok, well, I wouldn't love to have fibro - I would rather not have ANYTHING wrong, but having at least two autoimmune diseases, one of which is pretty serious...
Board: Fibromyalgia 04-12-2012, 06:35 PM
Replies: 5
Views: 930
Posted By sjogrens
Re: Confused about Fibro Info

My rheumatologist and I were just discussing fibro treatments today. Currently, the three avenues of treatment are medical (Cymbalta, Lyrica or neurontin, or Savella); physical therapy; and,...
Board: Fibromyalgia 04-12-2012, 06:27 PM
Replies: 14
Views: 2,585
Posted By sjogrens
Re: ANA Test

I just saw my rheumatologist today and he checked my tender points again (he did the first time I saw him, and again today because I've had some ongoing pain that was treated as a flare from my...
Board: Lupus 04-09-2012, 05:13 AM
Replies: 19
Views: 5,677
Posted By sjogrens
Re: ANA Titre Speckled 1:1280

This is my rheumatoid factor. I've never heard of an RA count...? I know there's a test that's specific for rheumatoid arthritis called an anti-CCP - it's another kind of antibody. With my lab, the...
Board: Lupus 04-08-2012, 05:41 PM
Replies: 19
Views: 5,677
Posted By sjogrens
Re: ANA Titre Speckled 1:1280

Sure - mine was 243 with a reference range of less than 14 being negative. There's a fairly good chance I have rheumatoid arthritis as well, which is probably where a lot of my pain comes from. I...
Board: Lupus 04-08-2012, 05:59 AM
Replies: 19
Views: 5,677
Posted By sjogrens
Re: ANA Titre Speckled 1:1280

lovesunshine, I don't know why you can't see my posts...? The whole point of my original post was to tell you I had the same ANA titer and have NOT been diagnosed with Lupus -there are many other...
Board: Lupus 04-06-2012, 07:08 PM
Replies: 19
Views: 5,677
Posted By sjogrens
Re: ANA Titre Speckled 1:1280

Thank you very much, Vee!

I am on 400 mg Plaquenil daily. I'm allergic to pill forms of prednisone (imagine that! My rheumatologist was floored - ha!) but I can tolerate the shots, so I did have a...
Board: Lupus 04-06-2012, 01:19 PM
Replies: 19
Views: 5,677
Posted By sjogrens
Re: ANA Titre Speckled 1:1280

I had the same ANA titer, positive for SS-A, very high RF and elevated SED. My rheumatologist diagnosed me last year with Sjogren's, but I meet more than enough criteria for Lupus. I've been in a...
Board: Sjögren's Syndrome 03-25-2012, 04:38 AM
Replies: 7
Views: 8,306
Posted By sjogrens
Re: Hair Loss

Are you on any treatments for your Sjogren's? Some people seem to experience less hair loss with Plaquenil once the systemic inflammation is under control. I have hair loss too -it's definitely...
Board: Sjögren's Syndrome 01-31-2012, 04:32 AM
Replies: 4
Views: 1,318
Posted By sjogrens
Re: Newbie with Questions

Yes, Sjogren's often causes joint pain and fatigue as well as dry skin. CeraVe moisturizing cream is wonderful for dry skin conditions. Plaquenil is usually prescribed for the joint pain. RA often...
Board: Sjögren's Syndrome 12-12-2011, 07:23 PM
Replies: 2
Views: 2,017
Posted By sjogrens
Re: Sjogren's and Lung Issues

I am so sorry for your loss.

Unfortunately, lung problems are fairly common with Sjogren's. What you described with the mucus is one of the most common lung complications - our lungs get drier,...
Board: Sjögren's Syndrome 12-12-2011, 07:12 PM
Replies: 6
Views: 5,307
Posted By sjogrens
Re: Blood tests are positive, but not sure what they mean?

Yes, I think you should see a rheumatologist. The ANA is not that high (mine was greater than 1:1280! The lab stopped measuring at that titer) and my SS-A also maxed out (meaning the lab stopped...
Board: Sjögren's Syndrome 12-12-2011, 07:07 PM
Replies: 5
Views: 4,802
Posted By sjogrens
Re: Plaquenil Anyone?

I take 400 mg of Plaquenil daily and have had no side effects aside from a week of intensely itchy scalp about a month after starting it. That went away on its own but drove me crazy for those five...
Board: Sjögren's Syndrome 12-12-2011, 07:01 PM
Replies: 3
Views: 1,691
Posted By sjogrens
Re: Sjogren's? What do you think?

That sounds very much like Sjogren's. The pain and tingling you described sounds like peripheral neuropathy which is common with Sjogren's Syndrome, as is the extreme fatigue (it's my most...
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