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Sjögren's Syndrome Message Board
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Old 08-25-2005, 07:27 PM   #1
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Question.............

I have been reading up on Sjogrens and am wondering if you can die from this. I am only 37 and all my blood work so far is pointing toward this. Also is it pretty much determined you will get RA as well. That runs in my family.

THANKS

 
Old 08-26-2005, 04:51 PM   #2
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Re: Question.............

Quote:
Originally Posted by fusionqueen
I have been reading up on Sjogrens and am wondering if you can die from this. I am only 37 and all my blood work so far is pointing toward this. Also is it pretty much determined you will get RA as well. That runs in my family.

THANKS
You can die from anything but the likely hood of you dieing from Sjogren's alone is not high. Unless of course you don't take care of it once you've found out that you have it. Your body and all the orgens need proper lubing and if your immune system is killing the glands that do that then you need to find another way to do it.

There are meds out there that are used to "manage" the syndrom and keep things under control so to speak.

 
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Old 08-26-2005, 08:30 PM   #3
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Re: Question.............

Quote:
Originally Posted by MilkNWheat
You can die from anything but the likely hood of you dieing from Sjogren's alone is not high. Unless of course you don't take care of it once you've found out that you have it. Your body and all the orgens need proper lubing and if your immune system is killing the glands that do that then you need to find another way to do it.

There are meds out there that are used to "manage" the syndrom and keep things under control so to speak.
Can you tell me about some of the meds?

 
Old 08-27-2005, 05:22 AM   #4
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Re: Question.............

Methotrexate (or called MTX) & Plaquinil - These are the two major drugs that doctors will have you take to control the effects of Sjogren's. I have primary Sjogren's so I don't know how or if the doctor would treat your course differently.

MTX - This started off as a Chemo Therapy Drug, then started to be used for people who have RA, Lupus and now Sjogren's. It's a drug to help calm your immune system down and stop it from killing off the moisture producing glands. At the same time it will surpress your immune system so you run the risk of getting sick easier then before. My doctor started me off at a low dosage of 10mg now I'm up to 15mgs.

Plaquinil - This started of as a malarial drug, now being used also for RA and Lupus etc. and some doctors like to Rx it for Sjogren's. This drug can have a side effect that has to do with the eyes. I didn't do a whole lot of research on this one because of that factor. I was already having a very hard time with my eyes due to Sjogren's that I didn't want to take the chance with a drug that could cause more.

Salagen / Pilocarpin - Both of these drugs are used to help you creat saliva in the mouth. I happen to take this 4X a day. They are both the same drug one is just the generic brand.

Folic Acid 1mg - I take this to help level off the MTX that I'm taking.

Leucovor - I take this to help make me not so nauseous from the MTX. It helps lessen the toxcitiy of the MTX.

The best thing you can do is alot of research on these drugs and anything your doctor tells you. The more you do on your own the more you were learn and feel better about how things are going. It can be really hard at times even very painful but it helps when you can come to a place like this and vent/talk it out.

I'm not a doctor I'm only able to speak from the things I have/am going threw...

Good Luck to you and keep posting!!

Last edited by MilkNWheat; 08-27-2005 at 05:24 AM.

 
Old 04-16-2007, 11:51 PM   #5
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Re: Question.............

Hi there,

I'm new here, just waiting for salivary gland biopsy to confirm the SS diagnosis, but I am positive I have it -- my Shirmer's test was 0 after 5 minutes - "dry as a bone" were the exact words she used about my eyes! Yikes!

Just want to share that my rheumie started me on Plaquenil about a month ago, and already my fatigue has improved a lot! By a lot, I mean going from barely getting out of bed and only able to shower every 4 or 5 days, to being up every day and only needing a rest now and then during the day. This week I took a shower 2 days in a row and even started a little house cleaning! This was a huge change for me! While there is a very SMALL risk of vision loss with Plaquenil (that is why you need regular eye checks with an opthamologist), it is extremely rare. So I would hate anyone with SS to avoid trying Plaquenil just for that one reason, especially since there are many professional research articles online that say it can be quite helpful for both lupus and SS. Having such dry eyes makes me want to get my eyes checked anyway, so I don't see it as a burden at all, especially with the great response I'm getting.

I hope others will share their experience with Plaquenil too.

Best wishes,
alix52

 
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