New to the forum, but not to the disease.

[debbie]

Hi everyone,

My name is Debbie, I am 57 and I live in NY State.
I was diagnosed with Lupus Sle in 2006, with Rheumatiod Arthritis a few months later and Sjogrens last fall.
The most bothersome symptoms from sjogrens for me are, dry mouth ( more throat), dry eyes and painful salivary glands. I have real dry skin at the moment, but it could be from the heater in the house.
I am lookind foreward to meet all of you.

Debbie

[Dolly Dimples]

Hi and welcome Debbie. I too suffer with the dryness of SS. Through time the dryness increases, so I would not blame your house heater altogether. My whole body inside and out is like a desert. I would say to you now, look after your self faithfully, with creams and oils , as well as foods rich in oils. Drink water , lots!   Keep up appointments with opticians and Doctors, and
   come here where there is lots of advice and tips.   Dolly x

[Carolina]

Hi debbie!

You have a LOT on your plate.

If you don't have a fairly big humidifier in your bedroom, I recommend you get one.

Mine puts about 10 gallons a day into the air, and helps me enormously.

I also use Nature's Tears to spray my eyes during the night (your eyes get drier at night when they are closed).

I use a medication to increase my saliva.  And you must pay close attention to your mouth and teeth.

I see the dentist 3 times a year instead of two.

Put some information in your 'signature line' which show at the bottom of your posts, so we don't suggest things you're already doing.

Welcome again.

Remember to keep breathing!

Hugs

Elaine

[quietdynamics]

Hello Debbie,
I hope to get into NY state soon...we have family in Woodstock, Sarasota and Buffalo.

Yes, the home heat can be very drying. I picked up some kitchen wash clothes in the Dollar Store that have a mesh on one side (not caustic) to slough off the dry skin...which will itch. I use it in the shower with Dove Aloe Soap, pat dry, then rub in some virgin olive oil. Works great.

In the bedroom (2nd floor) I closed the heat registers and have a crock pot with water going next to the bed. Snuggle under down comforter....ahhhh.

My Rheum said AI comes in 3's ...so you are done!
How are you doing?

[Joe S.]

Welcome Debbie,

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[debbie]

Thank you for the very nice welcome.
I love the tips, all of them and will def. try them.
I was on Plaquenil for a couple of years, but stopped, because it didn't work for me. With Lupus and RA, I have alot of joint, muscle and tissue pain. And from what I have read, Sjogrens will also add joint pain. Looks like I can't win.
I was on MTX for years, off and on. It is the only thing that has helped me. But because of the Autoimmune Hepatitis, I was diagnosed with a few months ago, I had to stop the MTX, to give my liver a break.
Unfortunenatly my enzymes are still very high, even without the MTX, the latest was ALT=169, AST=168. It has been over 200, several times.
The latest thing I am dealing with, is high Parathyroid levels, normal is 14-72, mine was 210., I just got back from the Endocrinologist, he wants to run more tests.
Until all this is being figured out, all I can take right now is, Flexeril ( muscle relaxer) and Mobic ( Anti inflammatory).
I am in alot of pain.
Glad that I have found you.

Debbie

[Styx]

Unfortunenatly my enzymes are still very high, even without the MTX, the latest was ALT=169, AST=168. It has been over 200, several times.

I presume they are considering AZA?

Styx

[debbie]

Unfortunenatly my enzymes are still very high, even without the MTX, the latest was ALT=169, AST=168. It has been over 200, several times.

I presume they are considering AZA?

Styx

Could you tell me, what AZA means? I have never heard of it.

debbie

[Styx]

Sorry; I mean Imuran (azathioprine). I think that's the favorite for autoimmune hepatitis.

Styx

[eyeamdry]

I wondered what AZA was too.  It's Imuran and I start that drug now.  I just picked it up at the pharmacy tonight.  Have never taken it before, but will know AZA is Imuran.  Lucy

[debbie]

Sorry; I mean Imuran (azathioprine). I think that's the favorite for autoimmune hepatitis.

Styx

Wow, thank you, I am going to talk to my rheumy about it. I wonder, why he didn't suggest it.

Debbie