Skip to content

    Announcements

    Exciting News for WebMD Members!

    We've been busy behind the scenes building new message boards for you. You'll have new and easier ways to find messages, connect with others, and share your stories.

    And, this will all be available on your smartphone or other mobile device!

    What Do You Need to Do?

    The message board you're used to will be closing in the coming weeks. While many of your boards will be making the move to our new home, your posts will not. Want to keep a discussion going? Save posts you want to continue (this includes your member profile story), so that you can re-post them in the new message boards.

    Keep an eye here and on your email inbox, we'll be back in touch soon to give you all the information you need!


    Yours in health,
    WebMD Message Boards Management

    Includes Expert Content
    Question for Dr. V
    avatar
    gringa1 posted:
    Hi Dr. V, quick question, Friday I had my appt. with my rheumatologist and told me my reading for my lupus was down on my last blood work and that it is in remission, my question is:
    If my lupus is in remission, why does my forehead hurt and burn so bad esp. above my eyebrows, my skin feels flaky and is always red. My face is red most of the time.
    When I get a little sun my my body begins to hurt and swell, esp, when I drive my hands hurt.
    My chest hurts, and sometimes hard for me to breath and every now and then irregular heart beats, kinda feels like flutters.
    I see my dr. again in 3mo., and I'll be doing blood work again.
    I also have fibromyalgia and he he said it's very active, (i am in constant pain), I also have epstein bar virus, osteoarthritis(which I just found out).
    I'm hoping you can answer my questions.
    Reply
     
    avatar
    R Swamy Venuturupalli, MD, FACR responded:
    You hit upon a very relevant question that occupies the minds of lupus doctors. The definition of remission in lupus is really an elusive one, and is the topic of numerous publications. It has been really hard for rheumatologists to agree on standardized measures of remission, and also for these measures to be performed accurately with regard to diverse patients. Additionally, given the varied manifestations of lupus, differentiating between the serious and life threatening versus the annoying manifestations is also very hard. That may in part explain why we have such a hard time performing clinical trials in patients with lupus. However, I might add that recently, some progress has been made in standardizing our measures of disease activity in lupus.

    Having said that, It seems like your rheumatologist is trying to communicate to you that there is no evidence of major inflammatory response or evidence of organ threatening disease at this time- and that is really great news! However, you continue to have skin and musculoskeletal symptoms. For these manifestations, usually antimalarial medications (such as plaquenil) are very helpful, as are anti-inflammatory medications, omega 3 supplements, stress reduction and aerobic exercise. Hope that helps give you some direction as to what your next steps should be.
     
    avatar
    nancyj95 replied to R Swamy Venuturupalli, MD, FACR's response:
    I find it interesting that we can be classed as "in remission" just on blood work. I achieved that status recently for the first time since diagnosis more than 15 years ago, but am not able to lower any of the meds I am on (Medrol, CellCept, sulfasalazine and neurontin plus others for Hashimotos and Chronic hepatitis). If I so much as lower the Medrol by 2mg I suffer greatly. I do take lots of omega 3 supplements, B-1 and B-6 in addition to the prescription meds. Why can't I lower any of them??????????
     
    avatar
    gringa1 replied to R Swamy Venuturupalli, MD, FACR's response:
    Thank you Dr. V for your information, as of yet I am not on any omegas, will get started on them. Lupus is just hard to understand doctor.
    When driving my joints hurt and I swell, and my chest starts to hurt, hard to breath, and tight. What to do???

    My rheumatologist put me on Gabapentin 300mg, starting 3 tabs 1x a day,then 3 tabs 2x a day, then 3 tabs 1x a day, I started last night, I'm on vacation this week, so we'll see how I do. I'm nervous about this, I can't afford to be sleepy during the day. I work for a periodontist and our morning consist of surgeries in the morning.
    Do you have other recommendations, reading the side effects has me thinking why did I start this, but given my pain I'm desperate.


    Coping
    With Lupus

    WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
    at work, or with family
    and friends.
    Visit Lupus Day2Night

    Helpful Tips

    Vitamin DExpert
    Lupus patients are rightfully told to avoid the sun since it can flare the disease. But guess what... by doing so you are setting yourself ... More
    Was this Helpful?
    94 of 124 found this helpful

    Related Drug Reviews

    • Drug Name User Reviews

    Report Problems With Your Medications to the FDA

    FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.