Sjögren's Syndrome

[mommasita]

This may be a long shot, but does anyone have any knowledge on this? TIA.

 

[momto2girls]

The only thing I know about it is that its symptoms are dry eyes and a dry mouth. According to my doctor, it is an auto-immune disease, but it usually is a secondary one to lupus or rheumatoid arthritis (meaning that it doesn't present itself alone).

I have dry eye and my doctor tested me for it, but luckily the test came back normal.

 

[jackskellingtonsgirl]

The Dr. told my friend she has it. She uses eye drops and takes aspirin because it supposedly causes thickening of the blood.
She gets regular newsletters from a foundation, so I imagine there is a support group, too.

 

[mommasita]

So, nobody has it eh.

I was diagnosed a few weeks back. I have never heard of the blood thickening, but I am new to this.

 

[wilderness01]

My mom's friend has this and it affects her mobility to a certain extent because it makes her stiff. Some days are better than others and sometimes you wouldn't know she has it at all. It's just when there is a flare up that she is super stiff and in pain.

 

[LakeAriel]

My Mom had it..It is a lot more then dry eye and mouth..It is all the mucus membranes and often affects the internal organs..
There are many support groups for it..good luck...

 

[mommasita]

It is a lot more. Thank you everyone. I will continue reading and monitoring..

 

[momto2girls]

It is a lot more. Thank you everyone. I will continue reading and monitoring..

I'm sorry. I didn't mean to make it sound that it was "just dry eyes and mouth". I just know that those are symptoms of the disease that usually tip doctor's off to test for it. I know that it is more serious as it is a secondary auto-immune disease.

Good luck to you, OP. I hope you find the answers and support you are looking for.

 

[mommasita]

I'm sorry. I didn't mean to make it sound that it was "just dry eyes and mouth". I just know that those are symptoms of the disease that usually tip doctor's off to test for it. I know that it is more serious as it is a secondary auto-immune disease.

Good luck to you, OP. I hope you find the answers and support you are looking for.

Oh no, I did not mean it that way at all. I am new at this, so I am happy for anything and everything..

 

[Tinks]

I'll pm you.

 

[LBAK]

I have it and it's considered severe. It has effected some of my organs including my lungs. It's much more then dry mouth and dry eyes. I take Plaquinal and Evoxac and Methotrexate for it. Feel free to PM me if you have questions.

 

[KPeveler]

momma - i think i have sent you over before, but there is a whole forum on butyoudontlooksick.com/boards... there may be someone there who can help.

 

[starwatcher]

i have mixed connective tissue disease which is like lupus and also sjogren's for over 12 years. I have the dry eyes and mouth also all other mucus membranes are dry. I have trouble eating cause i have hardly any spit to swallow so also most of my teeth are now crowned. Since i got pregnant i have a lil more spit but that will go away once the baby is born. If you have the severe dry mouth use the oasis mouthwash which moistens your mouth, they also have gum and sprays. Good luck to you

 

[mommasita]

momma - i think i have sent you over before, but there is a whole forum on butyoudontlooksick.com/boards... there may be someone there who can help.

Thanks. Yes you have, and thanks again. I had deleted it, but will renew there...

 

[Madisonsmom926]

My mom has had this for a couple years now, if you need any info, just PM and I will ask her for you!!

 

[momtoallie]

me me me

 

[Dakota_Lynn]

I have it...along with lupus, interstitial cystitis, rheumatoid arthritis and possible autoimmune-hepatitis. All of this is autoimmune stuff. Unfortunately, it's hard for me to really tell you what it is like because it's hard to differentiate between the Sjögren's and the other autoimmune problems since each disease has symptoms that overlap with the others. I can, however, offer you a great website. There's a lot of information over there at Sjögren's World and a very nice, supportive message board. Please give it a try! It's a great place.

If you haven't already, you should find yourself an eye-doctor who specializes in dry eyes. I am on restasis eye drops. They specifically treat eyes that are dry due to inflammation. It takes a good three months to get a lot of benefit, and frankly, I found the most improvement after about four or five months, but once it starts to work it is a God-send. Also, if you have a very dry mouth Salagen is really, really nice!

I have it and it's considered severe. It has effected some of my organs including my lungs. It's much more then dry mouth and dry eyes. I take Plaquinal and Evoxac and Methotrexate for it. Feel free to PM me if you have questions.

My doctor is considering Methotrexate for me. Are there are lot of side effects to that stuff? I'm on Plaquenil too and was surprised she wanted me on both. I hadn't realized that people could be on both drugs. I'd love to hear your experiences with this!

 

[LBAK]

My doctor is considering Methotrexate for me. Are there are lot of side effects to that stuff? I'm on Plaquenil too and was surprised she wanted me on both. I hadn't realized that people could be on both drugs. I'd love to hear your experiences with this!

I also have RA so the Methotrexate helps both. I was scared to death to start the Methotrexate because of the side effects but for me it's been great. I've been on it for 6 years now. At first it made me very tired and nauseous so I took it on a Saturday night.I don't experience that anymore, I guess my body got used to it. I slept through most of the nausea and I napped on Sunday's if need be. I get my blood work done every 6 weeks like clockwork and have not had any problems. Liver functions have always been good. My dry mouth is my most frustrating problem now. I can deal with that but I couldn't deal with the fatigue and the meth. has been a great help for that. Hope you feel better.

 

[mommasita]

I have it...along with lupus, interstitial cystitis, rheumatoid arthritis and possible autoimmune-hepatitis. All of this is autoimmune stuff. Unfortunately, it's hard for me to really tell you what it is like because it's hard to differentiate between the Sjögren's and the other autoimmune problems since each disease has symptoms that overlap with the others. I can, however, offer you a great website. There's a lot of information over there at Sjögren's World and a very nice, supportive message board. Please give it a try! It's a great place.

If you haven't already, you should find yourself an eye-doctor who specializes in dry eyes. I am on restasis eye drops. They specifically treat eyes that are dry due to inflammation. It takes a good three months to get a lot of benefit, and frankly, I found the most improvement after about four or five months, but once it starts to work it is a God-send. Also, if you have a very dry mouth Salagen is really, really nice!



My doctor is considering Methotrexate for me. Are there are lot of side effects to that stuff? I'm on Plaquenil too and was surprised she wanted me on both. I hadn't realized that people could be on both drugs. I'd love to hear your experiences with this!

Thanks. I tried your link and it is not working? Could you try again when you have a chance please. Thanks a lot.

 

[Bearvet]

DMIL had Sjogren's. It began in 1984 when food began burning her mouth. She lost all of her teeth at a very young age and now they think this may have been the first indication.

Basically all of the areas in your body that should be moist are dry. No tears are produced, so eye drops are always needed. Very little saliva is produced which makes it hard to eat. Joints become brittle. The worst part for DMIL is that her lungs became dry - she used the vest like people with Cystic Fibrosis - to try to keep gunk from settling in her lungs. A cold and especially pnemonia is devastating.

Different symptoms appeared over the course of 20 years. Sadly she passed away 4 years ago - she worked so hard at dealing with this. There is a research/teaching hospital in Baltimore (the name escapes me right now, but it's very prominent) that has a Sjogren's research unit. DMIL had hoped to go there, but never managed to do so. You may want to ask your Dr. about it.

I know I painted a very gloomy picture, but until the last year, DMIL always found ways to cope and not let it affect her enjoyment of life. She carried eye drops and a bottle of water at all times. Learned what to order at restaurants (shrimp scampi was her favorite) and rested when she needed to.

I wish you the best of luck - it's a tough disease but can be managed. Hopefully as more becomes known about Sjogren's better treatments will become available.