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Life With Lupus

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.

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!

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!

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!

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

Thank you!!!

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

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

What did dr. PETRI SAY?

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!

I went and spoke with Dr. Petri, whom you will only see for 20 minutes at best. The doctor you will see is Dr. Law is very inquisitive, will perform the first physical ask about family history and genuinely look into your case. Dr. Law is the one that transcribes notes of the visit and will send the report to all your doctors listed.

Dr. Petri is very knowledgeable, efficient and will do the same exam Dr. Law completes just paying attention to other areas closely for multiple diagnoses, if you have questions then write them down before you go and ask or present them to her. I did not like Dr. Petri's bedside manner she appeared to be condescending and did not like all the questions I was asking, despite saying "Of course you can ask questions". She spoke very slow and deliberate, almost like she thought I could not understand English. This was very insulting to me. I just agreed and left.

I expected more from Hopkins specialty care center, lesson learned. Hope your experience is better.

Hope all goes well.