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Meredith0903 (@meredith0903)

Would like to hear from people with Sjogrens

Autoimmune Diseases | Last Active: Mar 18, 2013 | Replies (38)

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@marilly

Hi – I was never given a definite dx of Sjogren’s, but my Schirmer’s (sp?) eye test showed severe dryness, and I have been dxd with several other autoimmune diseases. Is there a specific test for Sjogren’s? I use Restasis and have had my tear ducts plugged. My eyes are better since the tear ducts were plugged, but I still have to use drops frequently. Fatigue is my biggest complaint. Anything I do tires me out to the point that I have to take a nap. It’s very frustrating. I’m wondering if there is anything I could take to improve my stamina. Currently, I take Imuran. It may control some symptoms, but I feel terrible and am very limited in what I can do.

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Replies to "Hi - I was never given a definite dx of Sjogren's, but my Schirmer's (sp?) eye..."

I was diagnosed after an exam, Schirmer’s test and a biopsy. ( They took a piece of tissue from the inside of my mouth.) There is no one test for Sjogrens, rather a combination of symptoms and tests to determine a diagnosis.

I hope this is the right spot to post a reply to Meredith0903 and Marian Green. Thank you both for replying. I think my dx was based on the Schirmer’s test, blood tests for inflammation and the fact that I have other autoimmune diseases. As I said, my fatigue is debilitating. Of course, I’m 72, so that’s part of it, too, I’m sure. What medicines do you take?

Marilly,
Yes, there is but it sometimes does not become sero positive for a while as in my case, I just think the blood labs stink! The test is under two categories; Category A, Systemic Lupus Profile A which has seven specific tests.RNP Antibodies, Smith Antibodies, RA Latex Turbid., Antichromatin Antibodies, Sjogren’s Anti-SS-A,
Sjogren’s Anti-SS-B; Anti-DNA (DS) Ab Qn. If you are positive for Sjogren’s SS-A they say that is is secondary to another autoimmune disease. I wonder about that though. It does not make any sense in my case. I am told I have Primary Sjogren’s Anti-SS-B. Next Profile Systemic Lupus Profile B; Complement C4, Serum, Complement C3 Serum, ANA Direct. A “Vectra DA” test was performed on me to see disease activity in my body. This is normally used to follow Disease Activity in R/A patients this test is not a definitive test for R/A it monitors activity and response to chemical treatment you are receiving. Mine came back moderate/high while taking methylprednisolone. The Plaquenil worked very well with me, albeit a short time. I felt like my old self again.But I am supposed to be on an autoimmune cocktail of drugs. Medrol, Plaquenil, Methotrexate. I cannot tolerate the Methotrexate. Allergic to that stuff. It has just made me very sick again. I am now on high dose of Prednisone now. I feel crappy again. I was told that I need to be on a biologic such as what you are on. Sorry, just can’t afford it. I know you feel terrible because that is what this disease can do. I know your frustration and agony. Don’t you just get tired of dragging your body around like a rag? I call it the slow burn. Like you are slowly losing yourself. I wonder just how debilitating this can get. As though it is not debilitating enough. I don’t know what to do about improving your stamina, I fought this symptom for years and I have lost the battle. I try to just pace myself and if the dishes don’t get done or a load of laundry does not get done I figure it will still be here no matter what. So, I just shut the door or close my eyes to the mess. I do what I can. I used to be so active, as I am sure you were too. That is what we miss the most. Who we used to be. Hang in there, we need to adapt no matter how hard that is. I know I am still in the denial stage. I am sure one day I will get there. Life is a tough road. They said it was n’t going to be easy and they were n’t kidding. Keep your chin up and push those doctors for answers. If we all push together we may all accomplish the impossible.

sidepockets – Thanks for the response. I don’t recall whether those specific tests were done or not. I will check on that. I did not have a biopsy of lip tissue, which someone else mentioned. I know the presence of my other autoimmune diseases – relapsing polychondritis, vasculitis and Crohn’s – complicates the issue. I thought when I got my intestinal bleeding and anemia under control that I would feel better, but it didn’t happen. I do get tired of dragging myself around, like a rag, as you say. It is also embarrassing, because I don’t look sick! I’m sure there are people, maybe even doctors, who think this is largely in my head.

Take care, and thanks again. I had given up hope of ever hearing from anyone!

Hi Marilly,
It’s Dee again. I am like a kid in a candy store since I found this site. I felt like an alien with this disease. My heart goes out to you and everyone here. Oh, you are not sick enough let’s throw Crohn’s into the mix too. My brother in law had this in the 70’s and nearly died because they thought he was faking. Faking, really? He was 6’2, weighed 220. Became so weak he could not brush his teeth. All he could do was lay. My sister has this disease too. Just having Crohns can put you over the edge. My brother in law was saved by high dose steroids at the time. And now he is having his 60th birthday in a few days. He is taking the drug called 6MP; also known as Mercaptopurine. It was tough for him to take it but he hung in there and finally after all the operations and only a couple inches of intestine left he is stable. He was not supposed to live this long. He ran a Crohn’s support group. At his worst he was 105 pounds. I was watching him die as a teenager. I know the old “Oh, you look fine routine.” My brother-in-law looks better than ever now. At 60, he looks about 40. He can exercise now and follows a strict routine of rest, exercise and limits his activities every single day. I give him credit. I am tired of people saying I look great. I am going to start carrying a picture of myself around before I got sick and ask them if I still look the same. What a contrast. I look old and haggard at 54. I should not look this way. But they still say, “You look great”. No, I don’t. I look horrible. We always say to ourselves, if they can fix this I know I will feel so much better. I am tired of waiting to feel better and I am coming to terms that this may be as good as it gets. Ugh! Don’t worry about the doctors and what they think. I know we need them for our health care which of course is very important. But these folks are not living what we live and they really cannot relate at all. It must be nice to be healthy with a great career. I know I miss my career. You have so many autoimmune diseases you have to be struggling. This is very common to have Sjogrens with these autoimmune diseases. I don’t know how to put on a link but go to Sjogrenssyndrome.org they have a great video and a wealth of information. Some authorities call this an orphan disease. It really is nt it is just not diagnosed and women primarily get this. So, there are 2 strikes against us. I wish you well, stay strong, take care and be kind to yourself. Everyone with ill health needs support. People need to understand that too often we are pushed aside because we have a chronic illness/illneses. I believe doctors get annoyed if it is nt something they can fix with an operation like appendicitis. Is there really people out there that think we would want to live like this? I want my darn life back. I had a great life. I loved life. I was blessed. Now, this is my cross to bear. So, we need to make the best of it and enjoy every moment of relief we get. Write soon. I now feel connected to the rest of the world again. Hugs to you, Dee

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