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Medical Forum / Diseases and Disorders / Arthritis / February 2006Newly Diagnosed with Lupus
I was diagnosed w/Lupus (anticoagulant + SLE) after the birth of my son (8mos. ago). I'm currently on Plaquenil (last 4 mos.) and haven't had many symptoms since. I would like to find some other women w/Lupus to chat with. I know Lupus isn't the same for everyone, but my Dr. hasn't told me much and I don't know what to expect. It would be nice to find out from others what their experiences have been and, if you're on Plaquenil, what your side effects have been. Thanks, Amy If you go to alt.support.lupus and you should find somebody that can help you. Denis >I was diagnosed w/Lupus (anticoagulant + SLE) after the birth of my son >(8mos. ago). I'm currently on Plaquenil (last 4 mos.) and haven't had [quoted text clipped - 3 lines] >out from others what their experiences have been and, if you're on >Plaquenil, what your side effects have been. Thanks, Amy Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Hi Amy I was dx'd almost 10 yrs ago. I'm 30 yo now. What do you mean by anticoagulant? Do you have Hughes Syndrome? (sticky blood) the Lupus newsgroup is great also Here's some info I've collected Please, please, please go to the Lupus Foundation of America site www.lupus.org and read all the information they have. It is the most current information available and you will learn a lot! Also, either buy or go to the library and get Dr Daniel Wallace's "The Lupus Book" 3rd Edition and read it cover to cover. Dr Wallace explains in layman's terms everything you need to know.... just as the LFA does. The LFA also offers a magazine called Lupus Now which is full of great info. The Arthritis Foundation www.arthritis.org also has a lot of helpful information, a magazine Arthritis Today. There are over 100 forms of arthritis so there's a lot to learn. The National Institue of Arthritis and Musculoskeletal and Skin Diseases offers FREE publications. Take advantage. http://catalog.niams.nih.gov/ hi amy,like others have said find books and read them,understand thats not always easy with a baby,also internet sites....I recently had blood tests and they showed up saying I had lupus but my doc hasnt confirmed it...had a blood clot in my leg and thats when I had necessary tests done.My mum has lupus and she has her good and bad days,I have Rheumatoid arthritis ...Good luck with your research and also your doc mighten know alot about it and thats why they havent given you much info ..Keep your chin up ..Carol > I was diagnosed w/Lupus (anticoagulant + SLE) after the birth of my son > (8mos. ago). I'm currently on Plaquenil (last 4 mos.) and haven't had [quoted text clipped - 3 lines] > out from others what their experiences have been and, if you're on > Plaquenil, what your side effects have been. Thanks, Amy FWIW, there isn't a blood test that can be used solely for the diagnosis of lupus. Certain blood tests can be pieces of the bigger puzzle. Unfortunately, having RA does put you at a higher risk for having another autoimmune disease. Doesn't that suck? Many meds used in RA are the same used in lupus. Good luck and hope you don't have another dx added to your plate. > hi amy,like others have said find books and read them,understand thats > not always easy with a baby,also internet sites....I recently had blood [quoted text clipped - 11 lines] >> out from others what their experiences have been and, if you're on >> Plaquenil, what your side effects have been. Thanks, Amy A lupus patient told me several years ago that there now one or more tests that were either specific for lupus, or were strong indications. I didn't follow up to find out what the test were. Google or www.ncbi.nlm.nih should let you search for lupus AND tests -- Bruce There isn't. It's just not that easy to diagnose. If certain tests are positive, you most likely have it..... but it's all a puzzle. >A lupus patient told me several years ago that there now one or more tests >that were either specific for lupus, or were strong indications. I didn't >follow up to find out what the test were. Google or www.ncbi.nlm.nih >should let you search for lupus AND tests > -- > Bruce I'm not sure if this is in response to my originial posting (my first time on google groups), but I have been officially diagnosed w/Antiphospholipid Antibody Syndrome (Anticoagulant/ blood clots too much) and SLE. I had the Dx confirmed by a hemotologist, in addition to my rheumatologist. I've been on Plaquenil since mid. October and haven't had many symptoms since. B/f the Plaquenil, I felt run down and had lots of sore throats + upper respiratory infections. These all stopped after going on Plaquenil. I have insomnia and have lost almost 10 lbs. (which is a lot for me) and I'm not sure if that's just Lupus or the Plaquenil. I'm also worried about trying to have another baby. My husband and I definitely want a 2nd., but I know it can be difficult w/the APS. Has anyone else been in a similar situation or had the same side effects (weight loss, insomnia)? Also, I'm wondering if Plaquenil helps in the long run, b/c I've read other postings that indicate your body gets used to it and it isn't effective anymore. Any feedback is appreciated. Thanks, Amy > I'm not sure if this is in response to my originial posting (my first > time on google groups), but I have been officially diagnosed [quoted text clipped - 12 lines] > body gets used to it and it isn't effective anymore. Any feedback is > appreciated. Thanks, Amy There's a thread a littles ways down titled "update on getting pregnant with RA." that you might find helpful. Ari  Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ |
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