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Jul 11, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Hi, Mima – Do you have a link to the Sjogren’s site? I’d like to join and get the newsletter. I may increase my Restasis to 3 times daily. I see my eye doctor this month and will ask. To make matters worse, I have rosacea in my eyes. I had known about rosacea on my face, but no one had ever mentioned the eye problem. He plugged my tear ducts, which helped, and prescribed doxycycline. However, the combination of Imuran and doxy caused my liver enzymes to soar and I had to get off the doxycycline. If it’s not one thing…

Do you know which lab tests reveal kidney involvement and how often they should be repeated? I don’t think I’m on any schedule of lab work except at my hematologists. He monitors my anemia and I see him more often than anyone. My rheumy recently sent me for a nerve test because the numbness in my feet is getting worse and I’m having episodes of numbness in my hands as well. The neurologist, who was about 12, said everything looked OK, and I haven’t heard from my rheumy. I don’t know what to think. Everything is NOT OK!!

Thanks for posting, Mima. Your info is really helpful. Good luck.

Jul 10, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

sidepockets – I never associated my brain fog w/Sjogrens, but I knew it had to come from one of my illnesses. I find myself mispronouncing words or using the wrong words when I know the right ones. I have wondered about that and have often thought I might be becoming senile. I actually do better on the computer because I can see the errors. Even if I correct myself when I’m speaking I’m embarrassed.

Jul 10, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

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!

Jul 10, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

You go girl! 🙂 I’d never thought of recording a visit. I’m sure some doctors would be horrified. We really need a printout of every thing that is written or recorded electronically as well to be on the safe side.

I think cut and paste has become standard along with incorrect or misspelled medicine names. On a followup visit, I discovered that one of my blood pressure meds was incorrectly listed in my chart. The aid who took my blood pressure and listed my meds was not listening and wrote down what she thought I said. Since she is not a nurse or doctor, she doesn’t know the drugs and had no idea what she had done. I shudder to think what other errors are made on a daily basis.

Apr 16, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

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?

Apr 15, 2012 · Hi - You said your level of fatigue has improved. What med/meds in Just Want to Talk

Hi – You said your level of fatigue has improved. What med/meds do you take for Sjogren’s? Fatigue is my worst problem, so I’m looking for ideas to discuss with my rheumy. Thanks. @powerofpositive

Apr 15, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

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.