Lupus Center at Johns Hopkins

Does or has anyone ever to the Lupus Center at Johns Hopskins? I have an appointment there in a few weeks, and I'm wondering what to expect. If anyone is/was a patient, please share.

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Permalink Reply by Ballerina8876 on January 10, 2012 at 6:04pm

My primary care doctor's secretary goes there. We didn't talk about it much, but she did say that she liked her doctor there and she never had to wait that long. Hope your appointment goes well!

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Permalink Reply by Carey on January 10, 2012 at 6:51pm

I loved it! I wrote a summary on here which you may have seen. I made sure to bring records, my own symptoms list, pictures and meds. Feel to ask questions. I think/hope you'll have a great experience. GL!

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Permalink Reply by firstflorde1 on January 10, 2012 at 9:11pm

Hi, I went to their website and they have pretty good information about lupus. I wish they where in Az too. I have been sick since 12/31/11 with a cold, upper respiratory infection, body pain and who knows what else( I think I am having a flare) . I got antibiotics on 01/02/12 got little bit better for about 2 days and now I am right back to sick again. I called my doctor left a message and never got a call back whitch is very unusual because she has been extremely good to me but now sometimes I feel like my doctor thinks I am hypocondriac (not sure of the spelling). That's why I wish I had a doctor that takes care of nothing but lupus. I am waiting for an appoinment with a new specialist. I wish you luck with your doctor please let me know how it goes and if they are good doctors

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Permalink Reply by sarahinfbg on January 10, 2012 at 9:27pm

Yes, please share with us how the appt goes at Johns Hopkins. I was not aware of that center and it would be good to hear more about it!

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Permalink Reply by debia1 on January 10, 2012 at 10:25pm

Im sorry I dont know, it depends on what type of lupus you have? and the care that u need.... Where is this center, I live in NY, Staten Island, NY

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Permalink Reply by Ann A. on January 10, 2012 at 11:27pm

http://www.lifewithlupus.org/forum/topics/dr-michelle-petri-lupus-c...

This post was made by someone who has visited the lupus clinic at Johns Hopkins. I think that when you click on the Recommend a Doctor link, this posting is right up under yours. Hope this helps.

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Permalink Reply by sarahinfbg on January 11, 2012 at 6:55pm

Thank you!!!

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Permalink Reply by Ann A. on January 12, 2012 at 9:56am

You are very welcome. Sounds like you are going to a great place with great physicians - but then that Johns Hopkins!

sarahinfbg said:

Thank you!!!

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Permalink Reply by Momof4sons on March 12, 2012 at 8:09pm

Let me know how your appt went. I'm very interested. I too had went to Good Samaritain Hosp, Balt, Md to see Dr. Jill Ratain. She comes recommened with great credentails. However, I felt like she judged me. I saw her for 6m. She rx, Plaquinil only. She beleieved that I had Lupus. After no relief from the Plaquinil, se gave up on me. She said to try hot water therapy for my pain. OMG. What about another medication? What about all of my other "Lupus like" sypmtoms? They didn't go away. But, I did. I'm currently awaiting appts at Georgetown University, Wash D.C. and University of Penn.

Whatever you decide, never give up. Listen to your gut. Jean

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Permalink Reply by debia1 on March 12, 2012 at 9:53pm

Hi flower picture, Have you seen a rhematolgist.... that dedicates to patients with Lupus?

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Permalink Reply by Rob K on March 15, 2012 at 10:09am

What did dr. PETRI SAY?

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Permalink Reply by Fessissima on March 16, 2012 at 3:53pm

Sorry everyone, I did forget to tell you about my appointment!

Dr. Petri at Johns Hopkins is a great doctor. She is extremely thorough and patient. After reviewing my medical history and meeting with me a few minutes, she was able to diagnosis me with Fibromyalgia, Osteoarthritis, get advise on different medicines I should and shouldn't be taking, and give me tips on what triggers cause flare ups, etc...

I have been treated by the same rheumatologist in Houston for 4 years, and he never mentioned any of this important information to me. So I think the trip was well worth it.

I will be returning in July for a follow up, and a consult with the Nephrologist on staff. He also specializes in patients with Lupus/Lupus Nephritis.

I would definitely recommend her to anyone!