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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.
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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.
 
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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??????????
 
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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.


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Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More

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