First, I want to say I'm sorry for my bad english, I'm french and I dont have many occasions to practice. My question is : since many years I'm having joint pain, redness on my cheeks and nose going a bit up so it looks like a butterfly but not all the time and it's worst when I go under the sun. I dont talk about the extrem fatigue, hair loss, short time memory loss, looking for my words and a strange skin trouble. Years ago, the GP I had at that time told me it was nothing but I still dont know what it is : my skin open so I have an open hole but no infection and no pain! It's mostly on my belly but I've had it to on the top of my thigh. The GP told me it would go away by itself and it did but I have no clue what it is! When it's cold my fingers are frozen and if I touch someting cold I have what I call freezing pain.
I dont mention almost daily migrain and I observed that each time I have a pain crisis, I have sores in my nose and on my small lips (that GP had told me to be a pimple in 2005 and I never asked again but had it every time I had a pain crisis). Just so you know, I changed GP in 2010 after being a week to hospital for sever back pain but a day before the GP said it was all in my head and finaly was osteoarthritis.
I also often have swollen glands in the neck and had one removed 2 years ago. No cancer but it was not normal, it was ''granular". At that time, blood tests where ok. Last year I had enough and went back to a rhumatologist. She sent me for blood tests and I have inflammation and with the history, she think about lupus or spondylitis. More blood tests and I'm HLA B27 positive so she go for spondylitis and ask for an MRI to confirme but this one is not concluent.
I've searched the web and found that it's possible to have lupus and be HLA B27 positive. Is anybody here is in that case? I'm actualy treated with sulfasalazine but no improvement. I alos take ibuprofen and dilaudid when the pain is just to much and I just cant cope with it anymore. A few of my friends that where nurses told me it looks a lot like lupus.
Do you think I should ask my rhumatologist to consider lupus again even if I'm HLA B27 positive? Thanks for helping me see through it.
Thank you so much klee for your answer. I had my appointment with my rhumatologist and asked her about lupus. She told me that she though it was it and still but since it dont show in my blood results she cant treat me for it.
I'll start on Simponi in 2 or 3 weeks for the spondylitis since the sulfa are not working. My rhumatologist told me that she would test me once a year for lupus so we'll see.
Thank you for your answer Lupylisa. Here in Montreal they dont give us our tests results. I know She asked for anti-DNA and a lot of other ones. For the sulfa drugs, she give it to me 'cause she suspect spondylitis and want to see if it's going to work but I doubt it since I see no improvment and I take it since more than 6 month now.
I even stoped it for 2 month 'cause I had swollen glands without infection or fever. She asked me to stop the sulfa to see if it could be the cause but even a month after I still had swollen glands so it was not the sulfa and started back the treatment. My rhumatologist told me about a bio treatment if the sulfa dont work but it scares me. Would it be better to know exactly what I have before starting such a big treatment?
I would like to know how you deal with pain? Do you ignore it? Do you try to realy identifie the type of pain? Do you keep a journal of symptoms and pain in witch you quantify and qualifie your pain?
For myself, I realy have great deal of difficulty 'cause I've had pain for more than 35 years now so I dont pay attention to it. If it comes to strong, I just take a pain killer (dilaudid) and continue what I was doing. Since I'm in the processus of diagnose, I keep a journal (at leat I try to do it daily) of my symptoms and pains but it's realy hard to do it.
My name is Martine from south of Montreal Quebec, I'm 39 going on 40 in july and wating for diagnose on april 10th. I've been diagnosed with osteoarthritis 2 years ago but having joint pains since I'm 3 years old. I've seen doctors that said it was all in my head, some said it was growing pains (at my age, I should me at least 9'9" if it was growing pains!!!). I have all sympoms of Lupus and this could explain 95% of the past 10 years of pains and other symptoms the doctor could not explain but never tested. For him, it was only muscle plain even if it was in the joints!
I realy hope to find a treatment that's gona give me my life back.
ps, sorry for the mistakes I make but I'm a french person and I dont practice my english enough!