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Life With Lupus

Dr. Michelle Petri, Lupus Clinic, Johns Hopkins University


#1

I had the pleasure of being seen by Dr. Petri and her fellow Dr. Albeyda. They are two very conscientious, dedicated, thorough and caring female physicians. In my opinion, they are equivalent to the real life "Dr. House."

This was my third trip to Hopkins, but I hadn't been to the Lupus Clinic before & had not yet been diagnosed with anything specific. My husband and I made a (long) day trip, and I can't be happier that I went and finally got some answers! Dr. Albeyda called me for several phone interviews prior to my actual appointment & both doctors had round table discussions about my case prior to my arrival. I was so impressed!!

From the moment that I walked through the door, I was ushered to the correct elevator & waiting area. I checked in and waited only a short time. I had my vitals taken & was dressed in a gown. All of this took maybe 15 minutes tops -- in such a large hospital!!! I then had a records review/recap of the interview & physical exam with the doctors. I was informed of my diagnoses & my husband and I were allowed to ask as many questions as we desired. The doctor gave me her e-mail address, which she answers daily - most often same day (even on weekends)!! I was also given a list of foods and medications to avoid, and counseled on medications I should take and important research/data. These two amazing women spent about an hour and a half with me. I then went down and had extensive bloodwork done in the lab. Total time arrival to departure was under two hours, with well over 1:30 of that being spent with the doctors. I've waited longer than that in a GP's waiting room without being seen yet! These people are among the foremost experts & the upper eschalon in the area of Lupus diagnosis & treatment. The fact that they were female was also VERY important to me, as I have been blown off by many male doctors in the past. I highly recommend them!!


#2

This sounds awesome. A lot of times I feel like I don’t get any answers from my rheumatologist. I hate to change doctors just because he does know me


#3

Carey, thank you so much for sharing this inspiring doctor's visit. Can you elaborate on the foods and medications that these two doctors recommend you avoid? Thanks! pax & no pain, pj


#4

*** Their list says to avoid: Sun, Bactrim (trimethoprim/sulfa), Echinacea, alfalfa sprouts, melatonin, garlic, G-CSF (chemotherapy agent)

This info was interesting to me because I've always had TERRIBLE allergic reactions to bactrim/sulfas. Maybe now I know why! I had chronic UTIs as a kid & docs always tried to use it. This Dr. recommended adding these meds to my wallet allergy list in case of an emergency.

I was really disappointed by the garlic ban too, as I love Italian food. She explained it that if you pick up a food item and garlic is the 20th ingredient with listed & the content is very little, then it might be okay to consume. However, "garlic" breadsticks etc. should be avoided. My mom frequently used garlic in her cooking when I was younger. Interesting food for thought.

http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/ (This list looks a little different from mine, but not too much)


#5

Does anyone else carry a wallet card for emergencies (with diagnoses, meds, allergies, blood type, etc)? All of this stuff is almost too much for me to remember on a good day, let alone in an emergency situation. And, I'm pretty sure my husband wouldn't remember as well as I do.

My local rheumatologist came up with an interesting suggestion: bury the Lupus diagnosis in the middle of the card, don't list it first. His rationale is that he's had several patients go to the E.R. with chest pain. When the E.R. doctors saw the word "Lupus," they thought it must be Lupus-related chest pain & changed their course of thinking / delayed proper treatment...when the patients were actually having heart attacks. I'm young, but I think I'll still edit my card =)


#6

Thanks, Carey. Don't want to live without garlic either, especially since I always feel better after eating a lot of it. pax, pj

Carey said:

*** Their list says to avoid: Sun, Bactrim (trimethoprim/sulfa), Echinacea, alfalfa sprouts, melatonin, garlic, G-CSF (chemotherapy agent)

This info was interesting to me because I've always had TERRIBLE allergic reactions to bactrim/sulfas. Maybe now I know why! I had chronic UTIs as a kid & docs always tried to use it. This Dr. recommended adding these meds to my wallet allergy list in case of an emergency.

I was really disappointed by the garlic ban too, as I love Italian food. She explained it that if you pick up a food item and garlic is the 20th ingredient with listed & the content is very little, then it might be okay to consume. However, "garlic" breadsticks etc. should be avoided. My mom frequently used garlic in her cooking when I was younger. Interesting food for thought.

http://www.hopkinslupus.org/lupus-info/lifestyle-additional-informa... (This list looks a little different from mine, but not too much)


#7

I don't, but it's not a bad idea. Thanks. pax, pj

Carey said:

Does anyone else carry a wallet card for emergencies (with diagnoses, meds, allergies, blood type, etc)? All of this stuff is almost too much for me to remember on a good day, let alone in an emergency situation. And, I'm pretty sure my husband wouldn't remember as well as I do.

My local rheumatologist came up with an interesting suggestion: bury the Lupus diagnosis in the middle of the card, don't list it first. His rationale is that he's had several patients go to the E.R. with chest pain. When the E.R. doctors saw the word "Lupus," they thought it must be Lupus-related chest pain & changed their course of thinking / delayed proper treatment...when the patients were actually having heart attacks. I'm young, but I think I'll still edit my card =)


#8

I called and made an appointment to see the specialists at Hopkins. I feel great that you endorsed them. How long did it take for you to receive an appointment?


#9

Unshore,

I seem to recall it took awhile to get the initial appointment…perhaps two months. My doctors here had to write referral letters, fax all pertinent medical records, etc. In my opinion, it was worth the wait and a lot less time in comparison to the 11 years of undiagnosed suffering previously. Your circumstances are a bit different in a few ways. You’ve already been diagnosed and you’re more local to JHU. I hope she is every bit as helpful to you and can give you the answers you need. For me, she arranged all of my meds, recommended that I manage my care locally and return to the clinic with any new symptoms/concerns etc. If you like her, it would be ideal if she’d become your primary Lupus physician. Please report back so we & the others can compare notes. Good Luck! I’m hopeful for a positive outcome.


#10

Ok. Thanks. After visiting the site, I also learned there is a sjoren's clinic as well, which I also have. My doctor faxed the paper work for the Sjorgen's already so maybe I'll wait to be seen at the first clinic, then become referred to the sister lupus clinic..

However, I will update you.

Unshore


#11

Your story is inspiring. I found the site on my own, and I too highly recommend Johns Hopkins Lupus Clinic. I asked my PCP to fax them my records. I'm currently awaiting an answer of acceptance. I hope to have the same experience. Yours sounded amazing.

I also have NO positive diagnosis. Only a (+) ANA, all of my other blood work comes back normal. It's hard for me to beleive, because I have chronic pain, fatigue like no other, hair loss, memory difficulties, etc.

I would love to chat with you. Maybe you can give me another update.

Thanks so much for sharing,

MOMOF4SONS, Jean


#12

I also see Dr. Petri at Hopkins. I have been going to see her since 2008, when I first got diagnosed. I truely believe she is a life saver. I travel from Fredericksburg, VA to see her but I would not go anywere else.


#13

After many doctors with no diagnosis I fly to John Hopkins and saw Dr. Petri as well. She was indeed a wonderful doctor. I had a diagnosis when I walked out the door. I also highly recommend her!


#14

I’d love to join this discussion about Johns Hopkins and Dr. Petri. My daughter-in-law lives in Mississippi and has a severe case of Lupus with several other complicating conditions going on. About eleven months ago she was diagnosed with thyroid cancer, has since had the thyroid removed and has had radiation treatment as a follow up. Her endocrinologist still hasn’t been able to get her thyroid levels right with medication. This April cancer was found in her bladder and it was surgically removed. Chemo packs to the bladder are being given as a follow up. At around the same time she was diagnosed with the severe case of Lupus. Right now the flare is terrible and keeping the therapies for the thyroid and cancer from working. Recently she has had colitis and her kidneys are becoming affected by the Lupus. In the last month she has been given twice weekly IV therapy with steroids and vitamins, but they have had little effect. Her paperwork was sent a month ago to Johns Hopkins. We pray that they can help her there, as this situation is extremely critical at this point. My questions are how long have you stayed in Baltimore when visiting the clinic for treatment from out of town? Where do you stay? When you leave do the doctors help coordinate continued care locally? Has anyone ever had multiple conditions, like my daughter-in-law, and are the doctors able to work with specialists in oncology and endocrinology to coordinate care? Thank you for any help. We are desperate to get this 28 year old mother of 4 young children better.