1. I'm scared, and I dont normally get scared, but I was recently diagnosed with lupus. The dr has put me on hydroxychloroquine and said I may need chemotherapy but he is trying this to see how I do and he is retesting in 6 weeks. This is a new dr to me as I recently moved, so I called my old rheumatalogist in Wisconsin who I just adore and he told me he has suspected lupus for over a year but I hadn't tested positive for it when he ordered that test last year and he totally supports this dr's treatment at this point-he offered to review my results so I am picking up copies of my bloodwork and faxing them Tuesday to him. I dont know anyone that has lupus. I've checked out webmd and the arthritis foundation website, but what I am looking for is real information from real people so I thought I'd see if anyone here has it or is close to someone who has it, if anyone could recommend a good website, any information would be really appreciated.
  2. I'm so sorry to hear this!

    I don't have any experience with Lupus, but here is the website for the Lupus Foundation of America:

    Best wishes.
  3. Thank you so much-this looks like a really good website and I could cry right now-there is an awareness butterfly charm bracelet on the homepage and I have tears running down my face because 1-I have 3 butterflies tatooed on my left ankle and 2-I design/create jewelry and its like a sign to me that everything is going to be ok-thank you thank you THANK YOU:love:
  4. A friend of mine has it...she is doing really well. She has bouts where she does not feel well, but is doing ok. A friend of my moms also has it. She was diagnosed 30 years ago, and they only gave her a few months to live, but that was before they knew all that they do today. She is obviously just fine, and outlived my mom, as a matter of fact. I wish you the best! Please take care of yourself. I know you are scared, but this is something that can usually be controlled and lived with. :flowers:
  5. Im sorry ..its tough when you are scared..but it can be managed!
    I PM'ed you!
  6. Hey nativenydesigns, hang in there...don't let the diagnosis get you down, that can sometimes be the worst part. I don't have Lupus, but a rare condition known as RP "Relapsing Polychondritis", another anti-immune disease where the body attacks its own cartilage. I have very bad days, somewhat better days, and pretty good days. My rheumatalogist (who I've seen for years and freakishly just told me last week that she is becoming director of the hospital, so she will no longer be seeing patients :cry:smile: put me on Prednisone :yucky: and Methotrexate :sick: in 2003, and I'm still taking them. I have flare ups when I am tired, overworked, or try to say calm and don't get too worked up about it, because that will only make it worse. These anti-immune diseases can really vary, and be strangely unpredictable. My mom told me that she once tested positive for Lupus in her early thirties, but after a year or so it just "went away" and never showed up again. The Lupus website butterfly connection is most certainly a positive sign...very best wishes on your'll be OK.
  7. Hi! I just wanted to how sorry I am to hear of your diagnosis. I have Rheumatoid Arthritis & Fibromyalgia and it is VERY similar to Lupus. So similar that many doctors cannot tell the difference and the treatments can be similar as well. The symptoms are identical.

    I was diagnosed when I was 17 and I am now 35. I take Chemo daily for the last 10 years along with Enbrel injections. The oral Chemo can be taken daily or weekly depending on the brand.

    I know this is very scary time for you. However, I promise, in time, you will be able to deal with it better. The symptoms are very difficult can be overwhelming but you will learn to manage it.

    Please feel free to contact me with anytime.
  8. I'm sorry to hear this. Try to take care of yourself and not stress too much. Keep us posted on how you're doing.

  9. Hey there! I have rheumatoid arthritis and have been on Embrel for 1 year. Do you know what type of lupus you have? Do you also have another autoimmuine disease?
  10. Nativenydesigns,
    I wanted to wish you the best, with all the advances in the health fields today, I am sure you will be able to find the right treatment that will yield the least amount of symptoms. Also, it is very important to maintain a healthy diet and exercise regimen as well as monitor stress levels.
    I had a professor that was diagnosed with lupus and was able to overcome the symptoms by doing the above and practicing yoga regularly.
    Dont worry dear, there definately is hope, just take care of yourself to the best of your ability and find yourself and excellent doctor:yes:

    Let me know if you need anything, my thoughts and prayers are with you :flowers:
  11. I'm so sorry to hear of your diagnosis. Hang in there. You are doing the right thing by reaching out and doing research. I wish you all the best. We are here if you need us.
  12. Wow, look at all this great advice and hope you are getting!

    My mom has Lupus. She gets tired- somedays more than others, and always takes an afternoon nap. That's about it. There are so many different degrees of Lupus. She also changed her eating habits and added walking to her regime. She says those two things have helped her very much. I believe so much in the power of food and nutrition.

    Big hugs, nativenydesigns, You are not alone. :flowers:
  13. Thank you all so much. I dont have another autoimmune disease, I do have severe osteoarthritis and fybromyalgia along with a really bad back-I have had 2 surgeries in the last 3 years on my lumbar spine the last one being a multi-level fusion and I have been on disability since. I am on a lot of meds and sometimes the pain all blends together so I cant tell what is bothering me seems like it all does. When I started this thread I was on hour 30 of no sleep which is the worst-I will go 2-3 days with nothing more than a 2 hr cat-nap and then I sleep for 18-20 hrs from sheer exhaustion, my DH is so wonderful through this and I actually found this forum because I wanted a nice bag-I figured with everything I have gone thru I deserved a nice treat and I will often sit hear reading the posts and looking at all the pictures and I feel like I have found a new home so to speak...I just thank all of you for replying because it makes me feel better-you all rock!:love:
  14. What are your symptoms??? if you dont mind me asking cause my close girlfriend has it and she was diagnosed at 23 wtih Lupus ( not sure what kind) but before she started going to see an acupuncturist she couldn't walkd down stairs....she couldnt' even stand in the shower...she had to sit on the stool....her own immune system attacks she has flare the moment she is good and hasn't had any one recently (knock on wood).......What advice I can give you is WITH your treatment now...try to find a alternative theraphy to accompanied you with your medication for the side effects...they help a great deal....DONT STRESS TOO MUCH.......if you would like to talk to my friend Please PM I can give you her msn!!
  15. so sorry. sending warm hugs your way. my mother in law and sister in law are actually being tested for lupus. i can imagine how frightening this must be for you.hopefully you can get in contact with a support group close to you.its hard when you have to readjust your way of life due to an illness or disease. be strong. we are here for you.:flowers: