View Full Version : Do I need a new Rheumy??

04-06-2010, 09:37 AM
So I belong to 2 other lupus sites other than this one(mdjunction.com & healingwell.com) 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.

04-06-2010, 12:04 PM
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

04-07-2010, 10:41 AM
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.