Tuesday, March 12, 2013

The return of (or to) Johns Hopkins Lupus Center

I'm not going to lie...I have had my doubts about Hopkins' Lupus Center. The whole "email me instead of going to the ER" thing had me worried. But I am starting to come around. It was, after all, Dr. Petri (head of the center and my rheumatologist) who figured out that, hey, maybe this patient has  gastroparesis. Every other doctor set my symptoms down to a) drug side-effects or b) anorexia. And apparently gastroparesis isn't all that common in lupus, so fair play to her for getting the diagnosis right on the first try.

I've also been impressed by the fact that Dr. Petri is not a fan of long term use of Prednisone. Most rheumatologists try to force as many corticosteroids down your throat (or through your veins) as possible. I hate that approach. Apparently so does Dr. Petri. She has introduced the "no more than one solumedrol shot/infusion series every three months" rule because the research shows that any more frequent administration can result in serious organ damage. Fair enough. As she said, more frequent doses would make me feel better...but they'd be doing serious organ damage in the process. No bueno.

Unfortunately, I am the odd one out when it comes to medications. Drugs that are supposed to be safe tend to cause problems for me. So...we will have to see if I tolerate the new treatment plan Dr. Petri worked out. If I don't she said she'll find something else. This time I'm slightly less skeptical about her ability to do so. I guess the Lupus Center may be worth it's reputation after all.


  1. It is incredible that you could go to a doctor with the complaint that "I can't eat" and have them say, "Oh, I bet you're just doing this because you want to." I think you deserve a lot of credit for not having even bitten any of these doctors (even though we all know you couldn't eat one anyway.) I really hope this new strategy works for you.

  2. I have been going to John Hopkins Lupus center for almost 3 years I can honestly say it has saved my life! I find her very quick responses to emails very reassuring. By the time I would attempt to go to the ER she would have already responded. Even at night. I truly feel for you and I wish you all the best in finding the treatment that helps you the most without hurting you. I have to have solumedrol infusion for the first time next week and I am quite nervous about the side effects. How was your experience?

  3. I have been seeing Dr. Petri at Hopkins for 22 years. I would not trust any other physician to treat my Lupus! The first time I met her I walked into Hopkins without an appointment and 27 weeks pregnant. She immediately saw me and took down my history. A year earlier I lost a baby at 20 weeks because the placenta clotted and my current OB seemed to think since we made it past 20 weeks all was good, but my intuition was telling me otherwise. long story short, I was given a doppler and immediately admitted, given steroids for the baby's lungs. It was determined that the baby wasn't growing due to placenta problems so he was delivered at 28 weeks, weighing 1 lb. 5 oz. He was on the respirator 1 day and came home at 3 1/2 lbs. My son Matthew is a healthy 22 year old and just finished his junior year at UMD.

  4. I see Dr. Petri too. I also appreciate her quick response to emails and her dislike of prednisone.