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Thread: Do I need a new Rheumy??

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  1. #1
    Join Date
    Sep 2008
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    Default Do I need a new Rheumy??

    So I belong to 2 other lupus sites other than this one( & I saw some posts on there about ppl who have probs with rheumys and their care.
    1.) My rheumy is a general rheumy although her personal interests are in Scleroderma. She is also still in fellowship so she is still learning the ropes. So should I be seeing a rheumy who specializes solely in lupus?
    2.) No local rheumys believed I was even sick so I have to go to one 3 hrs away. I also see a beuro there. They have had me on Plaquenil since june of 09 but im not in complete remission. They just treat pain & my seizures but wont give any other meds to help control symptoms.
    3.) My rheumy & neuro are located at Johns Hopkins Hospital in Baltimore Maryland & I live on the eastern shore about 30 minutes from Salisbury. Does anyone know of a rheumy I could even go to...but more importantly do you see the need 4 a change?, because I have cns symptoms they wont recognize as cns lupus etc. Thanks.
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Victorville, California
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    Finding a good doctor is such a personal issue that it is hard for me to say that you should or should not try to find a new one.
    However, I will say that, if your current doctor is not invested in your health and in assisting you in managing your disease, you have the right to find a doctor who will.
    Please know that the purpose of treatment in Lupus is to minimize and/or prevent flare-ups, to correct or prevent organ damage, and to treat inflammation and the destruction that it can cause. Treatment is not aimed at complete remission because achieving this is as unpredictable as the disease itself. So, you will probably not find a doctor who will say that the treatment regimen is geared towards remission. Instead, since the cause of the disease is unknown and, as such, there is no cure, the best that doctors and treatment can do is what I have stated above.
    So, you have the right to find a rheumatologist who will work with you, listen to you, and provide treatment strategies with you that will help you to manage this disease as best as you can.
    I am sorry if I have not been very helpful to you.

    Peace and Blessings
    Look For The Good and Praise It!

  3. #3
    Join Date
    Feb 2009
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    Thanked 4 Times in 4 Posts


    My rheumy is in croton md if your interested in trying a new one. i like him he is very good. listens well, he found other things wrong with me. i thought everything was the lupus. nott i have fibromylia and osteio arthritis and my lupus was in remission all my pain and fatigue caused by other stuff.
    Keep Smiling

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