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Thread: Lupus?

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    Default Lupus?

    Hi I am currently under the care of a rheumatologist who highly suspects lupus but has yet to diagnose me due to a lack of a positive anti DNA DS test so far.

    Symptoms
    bilateral knee/hip pain and swelling
    fatigue
    mouth ulcers
    morning stiffness with pain when breathing in
    nausea with vomiting sometimes
    Diagnosed with Raynauds Phenomenon
    hx chronic hives
    all over achiness
    reoccuring periods of night sweats
    anemia

    Tests:
    multiple positive ANA: most recent result ratio titer 1:64 which equals 640
    2 high ESR (sed rate) results 48 and 76
    high CRP (c reactive protein)
    high C4 level
    mild anemia

    My question is why wait to diagnosis and instead actually start to treat the inflammation so I don't constantly feel like I have what feels like a never ending case of the flu. Why wait disease progression and positive anti dna? Maybe treating me sooner rather than later can slow it down or prevent long term complications. Any suggestions would be highly appreciated.

    Thanks for any input!
    Velvet

  2. #2
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    Welcome to the site Velvet

    I have a rheumatologist who thinks that lupus is a term used by doctors who can not find out what's really going wrong with you :shock:

    Rheumatologists are few and far between here. The really good ones are not acception new patients so I'm stuck in waiting game.

    Even though my rheumy will not investigate for lupus she has put me on plaquenil and my family doctor put me on arthrotec.

    The combination of those two drugs is working well for me. It took a very long time to find drugs that did work for me.

    There was alot of trial and error and try again.

    I would suggest you keep going back to see your doctor when you are at your worst. That's what I did.

    Sometimes I would go twice a week and every time I would make it know that I needed help. Finally the search for a drug began.

    Everything seems to be a hurry up and waite situation.

    Most of the drugs they give you will take time to build up in your system before you know if it's going to work for you or not.

    Then, if it's not the right drug, you have to wait that same length of time for it to get out of your system before you can start a trial for another drug.

    I get the feeling that your rheumy wants to know exactly what he's/she's dealing with before beginning a treatment.

    Lupus systems are very wide ranging. I'm sure everyone here can identify with some but not all of your symptoms.

    I know at this time you must be scared and hurting and frustrated. We all have been and still go through this.

    There's a wonderful group of people here, feel free to ask quetions, read and comment on posts. This site is pretty informal and very responsive.

    Where is your swelling, and are you on any medications at all?
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    Hi Velvet,
    Welcome to the forum. I hear where you are coming from. I have a lot of the symptoms that you have minus the nausea and vomiting. I am wondering if they have tested you for Sjogrens? Have they tried to find out what type of Anemia you have? I have Pernicious Anemia along with the Lupus and Sjogrens. Do you have problems with dry eyes and mouth as well? You can have a positive ANA with Sjogrens and a negative Anti-DNA DS, but a positive SSA and SSB antibodies. What pattern was your positive ANA do you know. There are like 4 different patterns that they look for. I am just wondering is all. I hope that you get some answers and soon and get treatment. Keep posting ok hon. We all care about you and how you are doing.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Thanks ladies for replying..my swelling is in my knees and I am currently not on any meds. I was on naproxen in the past. I think the doctor may be testing for SSA and SSB also but I don't have dry mouth and eyes. I also had a false positive RPR but a negative lupus antiphospolid anticoagulant. I just feel awful so often that just sitting on the couch or a chair for 5 mins and I go to get up and my whole body is stiff and sore but I don't have tender points like in fibromyalgia. I look like an old lady when I go to move and I'm 32. ugh

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    Velvet...

    Welcoming you with a warm hug...

    You are experiencing a myriad of symptoms associated with Lupus. While ruling out or ruling in a disease you are absolutely right, they should treat your symptoms...even with something as simple as an anti-inflammatory such as Naproxen, Mobic or the like...

    Have you tried Aleve, OTC..it is the same as Naproxen but in a lower dose. Aleve, I believe is 200mg whereas Naproxen is 500mg. Dose with two Aleve...suggestion.

    How is your sleep...insomnia, little sleep can contribute greatly to pain also. Have you tried warm compresses, long showers for your joints... Movement is key to prevent stiffness..stretch, yoga, pilates, swim...

    Please do read the Sticky in Lauri's Lounge for self homecare...

    And you are absolutely right, early treatment, management of symptoms is key in treating Lupus.

    All your symptoms can be a direct result of inflammation within the body. Regardless of the cause we deserve the medical treatment.

    Have you inquired about Plaquenil...have you asked the doctor why he isn't treating your symptoms.

    How long have you been under this doctor's care. Who ever referred you to him, I would ask for another referral to someone else. I would suggest obtain a copy of your records and seek out another doctor.

    Obtaining a copy of all tests... requires calling the doctor's office and asking it to be left at the reception desk for pick up.

    You don't need a positive anti-dna ds to be diagnose. That is one test, one diagnostic tool to help with a diagnose and not a diagnosing tool in its self.

    If you chose to stay with him, ask him the questions you posed here, about treating the symptoms and why not. I would schedule an appointment to discuss your care or lack of it and not just an appointment to evaluate another symptom. Keep in mind you are hiring, paying someone to take care of your health...and that type of hiring deserves the best service...

    Being a rheumatologist also doesn't mean they have experience with Lupus..ask him if he does.

    Keep looking..you deserve care...

    Hugs,
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

  6. #6
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    Hi Velvet

    I have dry eyes as well, I use GenTeal drops several times a day as needed. I find it very soothing and doesn't irritate like some drops can do.

    I have issues with my knees as well, and a few other places (feet, ribs, neck, jaw and on)

    I wear a tensor soft sided wrap around velcro stap knee brace when I'm driving my car or doing house work. Actually for any activey that I have to do for a while.

    It feels great as soon as I put it on, but I'm also quite happy when it's time to take it off.

    I wear diabet compression socks that come up to just below the knee. I put them on first thing in the morning and wear them till I'm ready to go to work. I find if I wear them for the first hour or two when I get up I can control the swelling.

    I take plaquenil and arthrotec. Once those built up in my system my pain and swelling are managable.

    Doing some gentle excersizes every day helps me to get limbered up for the day. Usually by 5:30 or 6 pm my body has had enough and I'm back to gimping around again.

    Hugsss hope you are having a good day
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