lupus, rheumatoid arthritis, sicca connective tissue diseases

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

d for disgusted
New Member


Date Joined Dec 2013
Total Posts : 6
   Posted 12/3/2013 12:20 AM (GMT -6)   
hi I have been diagnosed with lupus rheumatoid arthritis and second sicca syndrome.  Does anyone have these three connective tissue diseases?
I was diagnosed in 1998 with ra.  In 2011lupus, I was diagnosed with second sicca about a two months ago but I have been suffering with dry mouth since August 2013.  I am going through hell between losing my saliva and having dry mouth,having pain due to lupus flare up, Colitis, not being able to taste anything anymore losing my appetite, and an uncontrollable cough. Is there anyone out there going through the same thing.
 
 I have been given salagen and cevelemine which is generic for evoax
prednisone for over 2yrs. and Plaqenil for about two months, omeprazole,
sulcrafate for my digestive track. Biotin, v. d3 Humira  and bromotene
cough medication.
 
d for disgusted
 

Post Edited (d for disgusted) : 12/3/2013 8:40:55 AM (GMT-7)


d for disgusted
New Member


Date Joined Dec 2013
Total Posts : 6
   Posted 12/3/2013 12:24 AM (GMT -6)   
There is nothing that has worked to bring back my saliva my tongue is coated with a white coating. My tongue is cracked and my lips are so dried and cut up no matter how much I drink they peel.
 
Is anyone experiencing the same thing
Oh and I almost forgot that my dr. told me I lost the ability to fight off bacterial and viral infections since I lost my saliva.
 
Thanks for letting me rant.
 
d for disgusted
 
 
 
 
 

Post Edited (d for disgusted) : 12/2/2013 10:43:04 PM (GMT-7)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/3/2013 12:33 AM (GMT -6)   
Sicca Syndrome is also called Sjogren's Syndrome and we have a separate forum for that... folks there seem to know a lot!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

d for disgusted
New Member


Date Joined Dec 2013
Total Posts : 6
   Posted 12/3/2013 12:59 AM (GMT -6)   
Lynnwood,

I was told they were almost the same but, yet different.
Sjogren's effects your organs and second sicca doesn't.
Do you know if that is true?

d for disgusted

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/3/2013 10:49 AM (GMT -6)   
When I was diagnosed my rheumy said -- you have Sicca, or Sjogrens' syndrome - it goes by both names but most used these days is Sjogrens. That was several years ago and since then every time I'v read anything that mentions Sicca its says "also known as Sjogrens".

So I don't know of any differences between them. Would like to see anything you find that says they are different!

thanks
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/4/2013 11:26 PM (GMT -6)   
I was told by my dentist that w/o saliva in our mouths we are more open to infections in our mouths. Especially, if you cut your gum or the roof of your mouth.

The saliva helps wash away the germs in our mouths. It also causes us to acquire more cavities in our teeth, most of them being down near the gum line.

I've not been DX'd with Sjogrens, but I'm on oxygen 24/7 and that will dry out a persons mouth. Plus I take 21 different oral medications which about 3/4 cause dry mouth. I also have two shots that I take that causes it too. I'm always very dry on my lips and tongue. I suck on sugar free candy or gum. I make sure I use an electric toothbrush and a waterpik flosser to make sure I keep cavities at bay. In 2012 I had 9 fillings that had to be done.

My teeth are also breaking and so far in 2013 I've needed 4 crowns. I will need 2 more in January. I'm brushing and flossing 3 times daily, but per my dentist other than tht there isn't much I can do.

I'd recommend that you talk with your dentist and try to follow their recommendations on how best to avoid infections and cavities. Good luck and I hope you find something that works well for you.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 12/5/2013 11:34 PM (GMT -6)   
Sicca is a type of sjogrens that only involves the eyes. I am sure that like most autoimmune disorders it can be part of an overlapping syndrome as well. These syndromes are often defined narrowly but as time goes on more overlapping diseases are put into the syndrome. Mixed Connective tissue disease is a good example that has expanded from including just SLE lupus, scleroderma and polymyositis to include other AI diseases.

http://medical-dictionary.thefreedictionary.com/Sicca

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

d for disgusted
New Member


Date Joined Dec 2013
Total Posts : 6
   Posted 12/6/2013 10:52 PM (GMT -6)   
bsime


Sicca syndrome, affects both the eyes with dry eyes and the mouth with dry mouth. it takes away your tears and your saliva. I have seen different specialists and everyone said sicca affects both the mouth and eyes.

d for disgusted

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 12/7/2013 10:42 AM (GMT -6)   
Welcome to our forum d! I have Lupus with secondary Sjogren's and I'm certain the two occasionally overlap. I think the important thing here is to relieve your symptoms. For dry mouth try the following:
1) Biotene toothpaste
2) ACT mouthwash- it doesn't have alcohol and rebuilds enamel
3) Biotene Oral Balance gel, especially before bed
4) Gum or candy with xylitol- it stimulates saliva production- Trident gum has it
5) Most important: sip on water all day

I always keep Trident with me and I find ACT to be a great help. I moderate the Sjogren's forum and you are welcome to stop by any time. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

d for disgusted
New Member


Date Joined Dec 2013
Total Posts : 6
   Posted 12/9/2013 6:30 PM (GMT -6)   
Hi Butterflake,

Thanks for the helpful hints. I drink water all day and night.
and I use ACT because Biotene products are too expensive and I
wasn't sure if I needed to go for the extra bucks. Thanks, you answered my question.

I was diagnosed last week with a yeast infection and fungus in my mouth due to sicca and I just got diagnosed with dry eyes. Can you answer a question for me? I was told by 4 different drs.
since I lost my saliva I lost the ability to fight off bacterial and viral infections. Today I was told that losing your saliva doesn't take away the ability to fight off infections due to sicca. Can you help me with this Please. This dr. is saying the only thing this will affect is my teeth.
Today I went to see a dr. in NY She has contradicted everything
my drs. have told me. and I am terribly confused.

My drs. office was suppose to fax all my reports but, when I got to the drs. office she didn't receive anything she didn't have any information to go by.
diagnosed: sle, ra, sicca, thrush, candida, hiatal hernia, colitis, irritable bowel, diverticulitis, osteoporosis chronic bronchitis, chronic cough.

Thank you,
d for disgusted

Post Edited (d for disgusted) : 12/9/2013 4:41:00 PM (GMT-7)

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 4:20 AM (GMT -6)
There are a total of 3,005,023 posts in 329,209 threads.
View Active Threads


Who's Online
This forum has 161762 registered members. Please welcome our newest member, fdgdfhdff88.
235 Guest(s), 1 Registered Member(s) are currently online.  Details
fdgdfhdff88