New to Lupus!!!

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New Member

Date Joined Feb 2010
Total Posts : 13
   Posted 2/23/2010 12:23 AM (GMT -6)   
Hello to all
A quick glimpse of my new life... 5 months ago I became ill with pneumonia, when I just didn't feel better after two weeks I went to the doctors, yet again. I was put on another round of antibiotics and to no surprise nothing happened. I started pecking around on the internet and found a lot of what I was feeling seemed to be symptoms of an autoimmune issue. I addressed my concerns with my reg doctor who shluffed off on my request for an ANA test. Needless to say, he called me the next day with my results and was referring me to a rheumy doctor. My ANA was positive and I had high RNP Antibodies and also horribly low vitamin D. I went to the rheumy doctor. She asked me questions, put me on celebrex and sent me home. She told me to come back in a month. I was back in a week with pleurisy. Next was steroids. These seemed to do the trick for about two weeks. I again, went to the rheumy who asked me questions and sent me home and told me to come back in a month. Basically, I feel pretty icky everyday. My shoulders muscles are constantly sore and my legs are on and off again sore. Last week I had unexplained bruises on my legs and was told my platelets were low. I have no rashes or skin involvement at all for that matter. I have only had pleural effusion, pleurisy, and pericarditis as shown in a ct scan. Also seen in my ct scan were problems in my thyroid and in my diaphragm. I can pretty much say for the most part of these past 5 months I have been unwell. The oddest happening for me was I managed to break my arm and not know how that happened. I was told that was an affect of steroid use and was put on calcium supplements. The rheumy doctor has told me she doesn't want to make a diagnosis based on these 5 months. She has told me she is evaluating me because of her concern with is it LUPUS or Mixed Connective Tissue Disease or possibly not an autoimmune disorder at all?????? I have just made an appointment with another rheumy because I am very flustered!!!! This was a big step for me to make a new appointment as I was so frustrated....I have been avoiding them.

This is all very new to me!
I live in a small town with only one rheumy doctor. I don't like to discount a doctor, but she is in her 30's and did her residency at a veterans hospital. I am stuck questioning if I should stick with her because she is a newer doctor or should I be looking for a long time rheumy! That is an interesting debate in my head right now.
I do not know one person with an autoimmune issue, I have a husband who is trying to be understanding but just doesn't get it, and my 2 close friends are self absorbed and used to me being the one to lean on!

So I just want to say TYTYTYTY for all the postings on here and for sharing your stories.....I feel so much better just reading through the stories on here...its a nice reminder to know you are not alone out there with this!
A few questions:
Is it a general thing to take a long time to be diagnosed?
My rheumy mentioned Plaquenil...I read the side affects and was scared and would feel better if I had some feedback from those who are on it?
My doctor thinks I have Hashimoto thyroid..but my thyroid levels are normal. I have a lot of nodules though in the thyroid. Does anyone out there have this, also?
Are there any specific tests/blood tests I should ask for? I have really only had bloodwork and a CT scan on upper chest.


Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/23/2010 1:30 AM (GMT -6)   
age of the doctor doesn't matter so much as are they a lupus expert not all rheumy's are actually few are. younger doctors actually tend to have more up to the minute ideas when it comes to meds and such. Plaquenil is one of the safest meds you can take, the thing with the eyes is left over from back when they used to give mega doses and is really rare at the doses they give now and totally reversable. You need a support system and for your hubby to understand. Try getting him to read the spoon theory at I hope I got that right others will correct if I have a typo. how long it takes to get a dx depends on your symptoms and how long it takes to find a good doctor.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Regular Member

Date Joined Feb 2010
Total Posts : 55
   Posted 2/23/2010 1:44 AM (GMT -6)   
My rheumy is young and AWESOME! I couldn't ask for a better (or older) one! Plus, since I'm young and plan on going to a rheumy forever (haha) I'm glad he's not going to be retiring in the next few years. Plaquenil was great for me. No side effects, and I go get my eyes checked twice a year since it's important for my job (once a year is recommended.)

Generally, it seems to take a while go get diagnosed. For many people, it's years. Lupus is such a random disease and mimics so many other things, it's hard for doctors to figure out. I pestered my PCP for months before being sent elsewhere and finding my rheumy, and a diagnoses.

Let the idea sink in to your husband. It will take him a while to wrap his head around how much this changes yours (and subsequently his) life. I sent the Spoon Theory to some close friends and family members, and it did help. Also, I sent them articles and passed around a book, so they could better understand what I was going through in the first months after being diagnosed. (My favorite book was The First Year: Lupus by Nancy Hanger.) This, and other forums, are great, and many of them have sections for spouses. Also, check blogs for both you and him. My sister blogs about having to deal with me dealing with lupus. (

Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 2/23/2010 11:04 AM (GMT -6)   
Hi Lori I haven't been diagnosed yet either but I have all the symptoms of lupus and a high ANA I am going to give my doctor one more chance because I like him. He is fareily young. I have to understand that when I saw him the last 2 times I didn't have half the symptoms I have now. It takes them along time to diagnose I think. I have 2 friends with fibro,several with RA, and one other with Lupus. We live in a small town hum maybe it's in the water. They all tell me that it was a struggle to get diagnosed so be patient but not to patient. Good luck blessings to you

New Member

Date Joined Feb 2010
Total Posts : 13
   Posted 2/23/2010 7:36 PM (GMT -6)   
Thanks for all the responses so far....this is such a confusing the begining! There is so much info out there on the web and you hear everything from good news to bad news about Lupus. I just feel like I've been put on prednisone and sent home to fend for myself! As soon as I go off the prednisone a week later its all back again...painfull lungs. Lungs seem to be my involvement. UGGGGG, I guess you are just generally so used to it being cut and dry at the doctors and I have to learn it is not this way now.
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