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    Default just starting meds

    Well I finally got in to see a Rheumatologist after a 2 month wait. I asked the " how many Wegs have you treated " question and he said a few - so I'm a bit underwhelmed. Started the Prednisone and Methex last week and all the joint pain is gone and the energy level has skyrocketed. Back to him in six weeks for some labs. I have the Duke dept of Rheumatology referral line on my speed dial if after 6 weeks I'm still not impressed with the MD. I'm surprised that with 2 university settings within a stone's throw ( UVA and VCU) of Richmond no one stands out as a champ. If anyone has gone to Duke and has a MD contact please send it on . I did learn the main Wegs MD at Duke is retiring soon and not taking new patients. May have to do the hike to Hopkins.
    BHunter

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    Default Re: just starting meds

    @Bradhunter

    You may want to make the trek to Johns Hopkins anyway just to be sure you're getting care according to the latest protocols.

    I live in Columbus, Ohio, and you'd think Ohio State would have significant expertise in treating vasculitis. Not the case. I drive the 140 miles to Cleveland Clinic to get treatment for GPA. My other docs are at Ohio State and they can communicate with my doc at Cleveland Clinic without too much trouble.

    I'm down to one trip to Cleveland a year now for my annual GPA checkup and rituximab infusion. My GPA doc in Cleveland is very responsive. If I send her a message via MyChart, I get a response in a couple of days, which is fine. If I call, I get a response that day - even if it's significantly after her office hours. I'm pretty judicious about calling her.

    I get my labs (monthly) at Ohio State and my GPA doc in Cleveland can see them. I check in with her if my labs show a significant abnormality. My creatinine runs a little high and my eGFR runs a bit low, but they're pretty stable.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: just starting meds

    Dr. Seo at Johns Hopkins is highly recommended as a GPA doc, and I can think of 3 Weggies I know who are extremely happy with him. I think there are more. And someone on here recently mentioned being happy with the docs at Duke..

    My current rheumy says he's treated about 20 cases of GPA, which doesn't impress me much, either. But I stick with him because he is convenient, and because my WG/GPA is well under control and has been for years. If things suddenly got much worse, I might have to go to Seattle, only about an hour from here, but not a trip I feel comfortable making by myself. But my local rheumy does have an infusion center in his basement in case I ever need Rituxin. If you and I can continue doing well on methotrexate and prednisone, we are in pretty good shape.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: just starting meds

    Thank you Pete and Ann. I will keep you posted on progress and the Duke experience. Hope both are doing well and enjoy the holidays.
    BB

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    Default Re: just starting meds

    Hi Brad,
    Even though we are only a few hours away from Duke, my husband, dogs and I drive up the night before, not knowing what kind of traffic we may run into. My appointment is for the next morning. We stay at the Hilton on Hillsborough. There are two Hiltons. The other is closer but doesnít allow dogs. This one is only a few minutes away. They have a van that will take you to Duke, but we drive. The valet parking is much easier than going to a garage and hiking. I think the place is huge, but CC is really massive.
    The Cracker Barrel restaurant is next to the hotel, but the food was horrible. Another patient said to drive to Ninth Street for a good variety of restaurants. You will have a fridge in your room and the hotel provides room service.
    All in all the whole operation at Duke is run very smoothly. They will do your blood work there. Follow up blood work and infusion can be done in your home town. Just provide your doctor with the names of where you want to go so he/she can send orders in. The doctor will then give the orders to the pharmacist who will implement them. The results of my blood tests are then sent back to my Duke doctor who portals them to me with a full explanation. With this system I only have to go to Duke twice a year.
    Let us know who you are seeing.
    Best,
    Masha

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    Default Re: just starting meds

    Thank you Marsha for all of that. Whom do you see at Duke? I will probably do the same to avoid the stress of travel. This whole thing has me spooked as it has so many different areas it can affect. Mine was eye redness with corneal ulcers that cleared up quickly with eye drops. I did have odd joint pain that instantly when away with oral prednisone. The fatigue is gone and i feel pretty darn good. Sleep is sometimes an issue. I have only taken Metrex twice with no ill effect.

    I am in healthcare and the autoimmune diseases I am not well versed with. I'm always curious- what was it that sent you to the Doc in the first place - symptoms ?

    Again thank you and all the other Wegs out there listening and responding to questions.

    Brad

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    Default Re: just starting meds

    Brad, my first symptom was a severe antibiotic resistant ear infection in both ears. That is a pretty common one among those with sinus involvement, though some don't get that. WG/GPA has a way of mimicking ear and sinus infections, which leads to greatly delayed diagnoses. There may be some infection present, but WG/GPA creates the conditions for it to linger and not clear up. In my case a very strong antibiotic, Levaquin, was the only thing that made a dent, given along with a short taper of prednisone. And then the ENT couldn't get a culture of the "infection" to grow. Then it was 2.5 years of recurrent "sinus infections" before it went into my lungs and I was diagnosed.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 12-03-2019 at 02:29 PM.
    Anne, dx'ed April 2011

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    Default Re: just starting meds

    Hi Brad,
    Your fear of this disease is normal. If you had a devil may care attitude then something would really be wrong. The most frightening cases that I have read about were diagnosed and treated many years ago. It seems to be the old medicine that caused most of the problems. Even three years ago, when you read about this on the internet, you wanted to hide under the blankets.
    I see Dr. Nancy Allen, she is really on top of it. She will soon be retiring, but she has trained many people, so I have a positive attitude about who will take over my case.

    Before you can get an appointment you must have all of your records sent to who you will be seeing. I did some research on the rheumatologists there, called the office, got all the info regarding sending the records. I picked up the records from the ENT and the rheumatologist, made two copies, one for myself and sent the other to Duke. I wanted to be sure they got into the right hands as quickly as possible. After they received them, my appointment was made.

    In my case, I was diagnosed fairly quickly. But this was after having years of sinus and respiratory problems and now I know many unnecessary sinus surgeries. Three years ago I was having terrible bloody nasal crusting. I was also exhausted. Saw my ENT, who also happens to be a Harvard trained surgeon. This guy is great. He suspected autoimmune, ran the tests, did the biopsy and called me at home with the news.

    My first year the rheumatologist had me on methotrexate, folic acid and prednisone. The folic acid and I did not get along, and the Wegs moved into my mouth causing loss of teeth. After a year of this I went on rituxan infusions. For me, this did the trick. But I had some bad experiences with the office where I was going and I lacked confidence about moving forward with this disease. I wanted and needed to feel I was going to see the best, closest in proximity to where I live. Duke is a world renowned medical facility. What on earth was I waiting for!

    I now get my infusions twice a year and I am on prednisone. We all try to either get off of it or get to the lowest dosage possible. Dr. Allen also has me on Bactrim three times a week.
    I understand there is no cure for this, but we must be our own advocates and try to live our best life possible. There used to be a commercial that said catch a tiger by the tail. Well, that is the bottom line.

    This site is a plethora of information. Now when I have an ache or pain there is someone out there who can relate. It is a support club of immeasurable degree.

    I am here to help. Donít hesitate to ask. But I will not tell anyone, not even my husband my weight!
    Masha

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    Default Re: just starting meds

    I see Dr Ryan Jessee at Duke South clinic. Get infusions there as well. It is much nicer than the hospital, easier to access and free parking. Iím pretty sure Dr Jessee studied under Dr Allen. He was in residency(?) when I first was hospitalized there in May 2017. Dr Allen and another would always come in last and review his findings.

    He has been great. Patient, answering all my questions, and giving me a voice in my treatment plan.

    We are considering not doing the next infusion if bloodwork and lack of symptoms continue in first of year. May increase dose of azathioprine. Currently on 100 mg.

    Iím considering this as Iím ďonlyĒ 52 and donít want to chance Rituxan becoming ineffective or react to it over a long period of time.

    I feel Duke is best choice in this east coast region. Plus you have this forum of experience to run questions and concerns by.

    Best luck,

    Keith



    Sent from my iPhone using Tapatalk

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