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Sjogrens Sundrome/interstitual lung disease

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Sjogren's Syndrome
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Posted 11/19/2013 12:07 AM (GMT 0)
Hello,

I am new to this site.  I was diagnosed first with Interstitual Lung disease (ILD)and once my lung biopsy and many blood tests completed, sjogrens disease kept coming up as the reason for the ILD and then Liver Hepatitas.

I am been treated with Predisone and Imuran.

I have very dry skin ,brain fog, memory problems, jaw problems... hair thinning

I don't know if the sjorgrens will continue to show more signs or stay controlled with medication for a period of time because of the medications. 

Interested if anyone has solutions for hair loss and any issues that I have.

Posted 11/22/2013 8:34 PM (GMT 0)
Welcome to our forum pshocker. As you can see our Sjogren's forum doesn't see much action. Regardless, we enjoy hearing from someone new. I'm sorry that you are having so many Sjogren's problems. One I can give you a little advice is on dry skin.

1) Always shower/bathe in lukewarm water, Never Hot.

2) Use only Dove or Neutrogena glycerin soap. I also sometimes bathe in Aveno oatmeal bath.

3) When very dry only was the necessary parts (skip legs, arms, tummy, etc)

4) While your skin is still wet rub a small amount of oil (I use baby oil, but even Crisco will do just fine) onto your skin then dab dry with a towel. Yes, some oil gets on the towel so I use the same towel a few days.

5) Once dry apply a good moisturizer especially to elbows and heals.

6) At night apply a thick coat of moisturizer to hands/feet (including nails) and cover them with cotton gloves/socks while you sleep. CVS sells cotton gloves for this.

I hope you weren't put off by my slow reply and hope to hear how you're doing soon! Love, Butterflake

Posted 12/2/2013 3:18 PM (GMT 0)
You can try the supplement Biotin to help with hair loss and get an hair shampoo and condition with vitamin e with moisture. TRESemme is a good shampoo and conditioner. I also got a hand/body moisterizer from a store called Whole Foods works very good and smells like chocolate....
I do know (First hand) from a neurologists that Sjogren's can effect the nerves as well, and this is happening to me.
I've also added "watermelon" into my diet to help retain water in my body...Do this slowly like a small slice....
Posted 12/3/2013 4:43 PM (GMT 0)
Hi pshocker,

I am new to this site too. I was diagnosed with second sicca syndrome which is also known as sjogren's about two months ago. I have been going through terrible dry mouth for over 4 months not knowing what was going on and terrible jaw pain.
I didn't realize they were related sometimes I get pain in all my teeth.
I also have rheumatoid arthritis. Lupus, lung problems a chonic
cough chronic bronchitis, reflux. hiatal hernia colitis, severe osteoporosis, eye problems an adenoma on my adrenal gland and the sjogens has affected my voice.


medications: Humira injections, prednisone for over 2yrs. for ra
and plaqenil for lupus for two months, cevelemine and salagen for dry mouth but they haven't restored my saliva. Omeprezole, and sulcrafate for my digestive diseases. Biotin multivitamin
vitamin d3 and a reclast iv for osteoporosis.

Is anyone experiencing the same things?
I am totally overwhelmed.

d for disgusted

Post Edited (d for disgusted) : 12/3/2013 9:30:51 PM (GMT-7)

Posted 12/4/2013 3:32 AM (GMT 0)
To d for disgusted, Yes, I also have a form of RA and I'm on methotrexate which further drys me out more. I use a crest non alcohol formula at night to guard against cavaities (sp?) Watermelon helps for me in restoring water for me but don't go gungho into that one small slice a day or you might get diarrhea, I've had pneumonia 4 times in my life so my doctor is taking precautions on me and not wanting to do anything stronger than the methotrexate, One thing that help a lot was a saline IV just plain saline IV once a month, but then that got to expensive on me as my co-pay is $50.00 + the $13.00 insurance won't pay for the saline, but it did really help with dryness...Maybe ask your doctor for just an added saline IV.
Make sure your also getting plenty of vitamin C to help against the lung diseases. I take 2- 500mg's of vitamin C everyday. make sure you get the flu and pneumonia shots. Flu shot every year and the pneumonia when recommended by your doctor. I guess with us having RA that the Sjogren's is considered secondary to that...I also have back problems due to car accidents and reflux, asthma, fibro, and a enlarged pituatary gland tumor...Can be hard to manage but you'll find a way, there is hope and newer medications coming out...
Many well wishes to you...
Posted 12/4/2013 5:42 AM (GMT 0)
hi pshocker, yes i have problems with dry month I have lupus SLE. and the doctor told me to go to this web site and order
Mighteaflow. it is new on the market.it is a natural green tea formula with xylitol. it is a moisturizing oral rinse.it worked for me i had it so bad i couldn't talk and it was hard to swallow.
i have jaw problems and teeth prolbems and it runs me in
the thousands this year my teeth are bad i go to a periodontics
every 3mouths since 1980. this year it is bad. but my lupus hits
my weakest point which happens to be my mouth. yes you could say i am fed up .well i won't go on here is the web site
www.camellix.com
good luck
lupie
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