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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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I have had sjogren’s for several years. I use restasis which has helped a lot. I continue to work and work long hours since the diagnosis. I am 62. I am optimisitc that I will continue to lead an active life.

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Replies to "I have had sjogren's for several years. I use restasis which has helped a lot. I..."

That’s great to hear! Thank you for replying.

hi, i have sjogrens and i’m 58..i’m grateful because i can work also. do you all have skin problems, kidney problems and joint pain. i don’t know anyone that has this. i have nice dr.s but they don’t tell me to much. what about brain fog..

Hi Mima,
Sorry to hear the dx of Sjogrens. Welcome to the club. Symptoms are so variable with this disease for each patient. Yes, I had skin problems, extremely dry, sensitive when the disease became full blown. Medrol and Plaquenil has helped with that. Much better now. Mild kidney problems right now. I did have unexplained bleeding from the urinary tract for a while. They told me it could be cancer it was not, it was from the disease. As for brain fog, this is strange a this is also a symptom of Lupus. I have it bad. I throw away my car keys. I have difficulty spelling now and at one time I could spell any word with ease. I throw drinks out in the trash can instead of in the sink. I have said some pretty embarrassing things in public as the words come out – not the way they should. I mispronounce syllables at times. I can’t tell you what I said but it had a lot of people gasping and in hysterics. Just as I was about to finish the word I was able to catch myself but the people around me knew what was about to come out of my mouth. It took me months to go back to the Ice Cream Parlor. My daughter was livid that I would not go back she loved this place. So brain fog, yeah, I know about that. I can barely type anymore, I just can no longer handle a key board. Sometimes I feel completely frustrated. I am ambivalent regarding my diagnosis, I definitely have Sjogrens however, the doctor told me I have R/A too. I wonder though, I have no joint disfigurement. Time to keep digging with this autoimmune stuff. At least, I can say that in one lifetime I feel I lived two totally different lives. One good, one not so good. But I try to take the good and the bad. My daughter keeps me going. Hope I answered this for you. Yes, it is a mystery to me too.

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.

dear marilly and sidepockets, so glad to hear from you. i have primary sjogrens with distal renal tubular acidosis, also arthritis not ra. i take evoxac for my mouth which made my tongue and mouth stop hurting.. unfortunally i have lost alot of my teeth due to very little saliva. the dentist recommended biotene for tooth paste, this was a great thing for me because i cant tolerate regular toothpaste. also evoxac really helps make saliva, at first i choked it was so much. one of my problems was people had trouble understanding when i spoke now so much better and i no longer choke o food. but i still drink alot of fluid. i use restasis 3 times aday for eyes and tears 4 times aday. my renal disease is caused by sjogrens. i didnt know i had renal disease because i guess my former dr didnt take my labs seriously. now i have to see nephrologist every 3 months. so please ask your dr for lab results. if i had been more pro active maybe i wouldnt have ended up in hospital for a week and was then told my true diagnosis. also now see rhematologist every 4 months. i really loved plaqeunal, it really helped my muscle and joint pain. but after 3 weeks i developed head to toe hives and n/v and kidneys tried to fall and in hospital 5days. tried methotrexate but got shingles 2 times ouch. now on sulfasalzene , waiting to see if helps joint pain. because of pain at night cant sleep which makes me forgetful.. i could not understand why my spelling is worse and then i read article about brain fog and that made me feel better, that i wasnt loosing my mind. i suspected for years that i had sjogrens but even wth positve ana the dr just blew it off. all this started when i was 42, now im 58. sorry for all typos im not a typer. some days i fill positive, somedays i feel down about this illness..im trying to take it 1 day at a time. i have supportive family and friends but i still feel like a complainer. i joined the sjogrems site and they sent some good info. they have a quarterly news letter also that drs who have this specialty participate in. they sent aiso info on groups you can go to . in my state they are 100 miles away. but i may contact any way. sorry so long winded, just nice to talk to someone who can understand. marilly i also have same problem and sometimes i see people look at me funny then i know i must of used wronge word or something not correct. but i remind myself to pay more attention and i smile alot and know this is kinda out of my control.. please write again. mima

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.

Hi Mima, I am finally starting to realize that I am not the only person in the whole wide world with this weird disease and even stranger symptoms. I am so tired of feeling like an outcast regarding my health issues. Renal Tubular acidosis. I tried to tell one of my doctors that I thought that was what I had and she freaked out. When I was urinating, and even defecating,( I don’t like being graphic but if we don’t come out of hiding we will never be heard.) I had burning urine all the time and even when I would defecate. My blood work was showing odd signs of dehydration yet I was drinking all the time. My urine now has no color which is abnormal and another abnormality of which I forget. I have to pull my electronic records off my computer. But if I do that I may lose this post too. I just replied to someone, very lengthy and hit a wrong key and poof it is somewhere in cyberspace. My hands don’t work too great anymore or my mind. Wow, I cannot believe that we all have a form of the identical symptoms and yet so many of us were ignored. I hated going to these doctors, I searched and searched until I found, well I can’t say I found him a phlebotomist told me about him. She said to me, listen, if this guy can’t figure it out, no one can. She was right. We even have to network our health. Mima, I can give you words of advice when you feel down, think about us on this site, chances are we are feeling down too. We are all struggling with this bizarre disease everyday and boy, is it a struggle. People can support each other from a distance. Believe me, I am not one to post or blog however, this is our plight. Our right to be heard and believed. Question, were you taking the brand name Plaquenil or the lovely generic. I ended up calling Sanofi the drug maker which I would never do to thank them for the quality of their product. I hope I can post that. It seems to cause very few side effects and I get side effects from everything. The Plaquenil was a miracle for about 6 or 8 weeks and symptoms starting popping through again. I was to take the cocktail of Metho, Plaquenil and Prednison (steroids). Forget the Metho, at least for me. Started itching, swelling in strange places and feeling just awful. This was my second try at the Metho. Mima, you need to vent. Stop trying to suck it up. Women are always told to suck it up. We need to be heard and understood. We have to talk about this and the medical profession needs to listen. I write too much. They are probably cutting me off. We all have a lot say and we are here to listen. Write often, this is therapy for all. Hugs, Dee

Hi Marion:
Some positive news here is good. You have a great attitude, with a lot of positive thinking. I need a good dose of positive thinking. I would like to think myself healthy again. This just becomes so old so quickly. I find I am in a rut of, “now what is going to happen?” I used to be a positive, bubbly person. Laughter truly is the best medicine. Live, love, laugh. Take care and stay positive.

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