View Full Version : Hi, My name is Codie and I have Lupus.

07-30-2012, 05:55 PM
For some reason tonight I feel like this introduction should be like a stereotypical AA Meeting lol. I was recently diagnosed with Lupus. Well, Kind of. Apparently I do not have enough symptoms to diagnose me with Lupus but my blood work came back showing that I am creating every antibody imaginable for it. So, I guess you can say I am in this gray area between diagnosed and undiagnosed. Like purgatory. I am currently taking Plaquenil twice a day. My stomach is still getting use to it but I think eventually we will come to some sort of agreement. My biggest concerns with Lupus is 1) Dealing with all the side effects they don't tell you about. Like certain limbs going numb for no apparent reason. 2) Having other diseases that create similar symptoms like the medication or the disease itself. I have Menieres disease so vertigo and dizziness is common to a point. 3) Knowing that the Lupus can bring my Myasthenia Gravis out of remission. I already went through that battle once do I really have to do it again. Come on!!! 4) Wondering how long I can keep my job. I think I am going to try and stick in there for another year just so i can get the awesome retirement. What job matches you 250% when you retire you may ask? My job in which I hate at this moment. But besides all my concerns and issues with this new disease I think I am doing ok. I feel like I am about to flare because my joints are starting to hurt more every day. Oh and tell me this. my pain gets worse through out the day. I start ok and then slowly go south. Does this happen to anyone else? It sucks when you realize that the end of the day is going to suck because one of your smaller toes is swollen and hurts to move by noon. ok so I think I am done ranting.... So hi everybody!!!!

07-30-2012, 09:01 PM
Hi Codie and welcome to WHL. Your story is somewhat different than most we hear. Usually the doctors won't diagnose because the tests don't say EXACTLY what they want no matter how many symptoms people are showing. I have never heard of someone being told they can't be diagnosed because they have all the tests showing it but no symptoms. I really don't understand doctors!

Anyway, welcome to our worldwide family! We are really glad that you are here!

07-31-2012, 10:02 AM
The way the doctor told me was that to properly say I have lupus I also need a certain amount of symptoms. She started me on Plaqenil so she can try to stop a flare from happening. I have mainly been getting joint pain and fatigue. It doesnt help that I have a vitamin d deficiency. For about two months I have been taking plaquenil, OTC Vit D with calcium, and a RX for Vit D2 50,00iu. I see my rhuemy this wed. So I hope we can take new blood work and see if anything is working.

07-31-2012, 10:13 AM
Thats basically what happened with me. My doctor said she was sure I had lupus but couldn't "officially" say it like she couldn't put it in my files or anything, until I had more symptoms but she started treating it right away. It took 3-4 months after that appointment to get the official diagnosis after my joints in my hands started to swell. Its because you need 4 of 11 criteria to get the official diagnosis. I had blood work that was all crazy and out of wack, but actually didn't have enough physical symptoms. I don't think I would have found out I had lupus if I hadn't been sent to my rheumatologist because I had really bad raynauds. She's the one who ordered the blood work. Treating it early is the best way to fight it.

07-31-2012, 02:00 PM
Ok, I missed the part about starting you on meds. Now I understand. Hopefully your doctor also told you that plaquenil takes between 3 and 6 months to work on most people. The Vit D thing is something that most of us fight as well. I can see why she says what she is saying

07-31-2012, 04:02 PM
My doctor informed me that it could take up to six months for any improvement. I was feeling ok until about a month after taking the medication. My joints are starting to hurt again. I am at least happy that the pain doesn't fully hit me until closer to the end of the day. I think my work would want to kill me if I had to take off anymore lol.

07-31-2012, 04:12 PM
Hi Cody,

Welcome to Whl.
That you pain is getting worse, later in the day, is pretty normal, I would say. Mine are bad, when I first get up in the morning ( morning stiffness), gets a little better after a couple of hours and then start to get real bad in the late afternoon, by the time the evening rolls around, I can barely move.
I am looking foreward to get to know you better.