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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hello there, Looking for some recommendations for rheumatologist for what will be a new lupus diagnosis

A MyLupusTeam Member asked a question 💭
Boston, MA

I tested positive ANA back in 2019 with antibodies consistent with SLE lupus. I have had intermittent symptoms along the way, but very manageable. I have never ever been to a rheumatologist to confirm this diagnosis of lupus however, my mom passed away two weeks ago and I believe I am in a really bad flare of lupus that’s what it feels like. My symptoms started with an upper respiratory infection that was very significant. Nothing that I’ve ever had before. My tongue was burning. I had a rash on… read more

March 30
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A MyLupusTeam Member

I agree with the answer above. Both Brigham and Williams Hospital and Mass General Hospital have excellent lupus centers. I have friends who travel from Rhode Island to see doctors or have had treatment at both hospitals. If the appointment is scheduled months away, request to be placed on a cancellation list.

March 30 (edited)
A MyLupusTeam Member

I’m very sorry for the loss of your mother. Losing a parent is never easy.

I suggest you book with any rheumatologist near you. It took me 7 months to be seen by a rheumatologist in Boston at Beth Israel. I actually booked 2 appointments with 2 different doctors just to get on their schedules. Both doctors had a 6-7 month wait time. I saw both doctors and ended up staying with the doctor closest to my home on the north shore - Lahey in Danvers. It’s just easier for me. I see her every 3-4 months.

Also, Brigham & Women’s is supposed to be the best for Lupus.

Good luck!

March 30
A MyLupusTeam Member

Karen Costenbader, MD, at Brigham and Women's has an excellent reputation, LP, and I agree with @A MyLupusTeam Member, too.

With a current flare, it's critical to get plenty of rest, UV protection, and a healthy diet. Exhaustion is common with flares, but if you notice frothy urine, shortness of breath, chest pains, or other unusual/concerning symptoms, please go to the ER! You may want to check out my story, as I'm a physician who has lived with lupus for 40 years and have written much about my experience and suggestions.

April 4
A MyLupusTeam Member

Thank you so so much ! This was so helpful !

March 30
MyLupusTeam

How can someone find a trusted rheumatologist in their area, and what symptoms during a lupus flare warrant immediate medical attention?

First, I'm so sorry for the loss of your mom. Grief and stress can definitely trigger lupus flares, and what you're experiencing sounds really challenging.

Your symptoms—the facial rash Show Full Answer

How can someone find a trusted rheumatologist in their area, and what symptoms during a lupus flare warrant immediate medical attention?

First, I'm so sorry for the loss of your mom. Grief and stress can definitely trigger lupus flares, and what you're experiencing sounds really challenging.

Your symptoms—the facial rash extending from nose to cheeks, extreme fatigue, headache, vision issues, and mouth sores—are consistent with a lupus flare. The combination of vision changes, headache, and a new facial rash needs prompt attention from a rheumatologist or your primary care provider. To find a rheumatologist you can trust in the Boston/South Shore area, try these approaches:

* Ask your primary care provider for referrals
* Contact your local Lupus Foundation of America chapter for recommendations
* Search the American College of Rheumatology database
* Reach out to local lupus support groups for member recommendations

Finding the right rheumatologist is important since this will likely be a long-term relationship where you need to feel comfortable discussing all aspects of your symptoms and treatment. Given your symptoms, especially the vision issues combined with headache and new facial rash, consider calling a rheumatologist's office soon—even before your first appointment is scheduled. They may be able to see you urgently or provide guidance. If your symptoms worsen, particularly the vision changes, confusion, or if you develop a stiff neck with your headache and any fever, seek immediate medical care.

A MyLupusTeam member shared being diagnosed at age 55 after years of symptoms, so getting a confirmed diagnosis at 57 is definitely not unusual. Many members describe similar flare symptoms, especially the overwhelming fatigue where no amount of sleep helps.

March 30

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