Hey everyone! I haven't been on here in awhile, but I am feeling quite overwhelmed now. After going from Dr to Dr, and being told one thing or another,(5 years now)My primary finally sent me for the tests for Lupus. Low and behold, they were positive. My first appointment with the Rheumatologist isn't until June 4th. I would really love to hear from anyone who has this awful disease, and any way they cope with the anxiety and feeling of uncertainty.

Hi, I have lupus too. I'm sure by now your an old pro! lol

How did your rheumie appt go? I'm sure he put you on plaquenil and maybe some prednisone if your in a flare. I'm sure you will start to feel better soon. And it's good you know what you have now, right?

I know for me it took the plaquenil about 4 months before I really felt a difference, but the prednisone helped me right away. It's funny how little is known about lupus.

How are you feeling?

Love and HUGS, Julie
ps I'm around anytime you want to talk to me!

Hi, I'm new here and I have mixed connective tissue disease, or lupus depending on the Dr. My Ana is 1:1250 with a speckled pattern, I also have fibromyalgia and migraines and Sjogren's. It can be quite overwhelmed ing at first, I agree with the other person who posted that you should be put on plaquenil and that it takes a wh Ike to work, do not go off of it. If you read everything on the Internet it may seem really bleak, but we just manage it one day at a it me. There are two sites I recommend, **, and some AI groups on FB for people with AI diseases. I file by having friends with the same issues and talk everyday with them on line on the FB pages, most are private. I just found this forum, so I am not familiar with it yet. Take care

I spent a good 15 years, really suffering with lupus (SLE). I was only on plaquenil briefly. I had better luck with Prednisone.

It was hard. In retrospect, I think it would have been helpful for me to have people around me with an upbeat, positive attitude re: the entire ordeal. I briefly went to a support group, but sadly, many there were really down and negative. IT is very understandable, but I think we needed more of a balance or perhaps at least someone heading the group who was stronger.

Now I have Sjorgens Syndrome. Just found out through blood work. I had the year from "hexx." Perhaps the stress did me in. Main symptoms for me are: dry eyes, dry mouth and fatigue. I also have migraines.

Anyway, re: the lupus....see the doctor regularly (mine wanted me to see him every month, but I think every 6 to 8 weeks is probably ok...depending on the situation), keep positive, do what you can, when you can. Watch your diet.

Really try your very best to eat in a healthy manner. For me, this really helped. Some things to consider: reduce sugar, flour and meat. No soda, diet or otherwise. Either no or very very very little alcohol. Eat lots of vegetables and fruit, perhaps a small amount of meat/fish and a moderate amount of very healthy starches like whole wheat bread, brown rice, etc. Pay attention to what you eat, and if something seems to bother you, don't eat it. If you are overweight, consider seeing a nutritionist.

If you find the dx frightening, consider therapy to help talk your way through the ups and downs.

Really try your best to avoid stress...but keep in mind, this is not always possible. So, when stress is unavoidable, learn how to cope very well. A therapist can help with this as well.

I found that as I got older, for the most part, the illness got better and even today, when it becomes a little active...I am able to deal with it a little better.

Best wishes for good health and happiness.