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Thread: What does Cleveland Clinic provide that local doctors do not?

  1. #1
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    Default What does Cleveland Clinic provide that local doctors do not?

    I live fairly close (just a few hours away) from Cleveland and have been considering making an appointment. I am curious, though--what do you get there that you can't get from a local doc who is knowledgeable?

    I am currently nearing remission (diagnosed late april 2015), if not already there. My creatinine and GFR are almost normal. Recent SED rate and CRP tests are normal. ANCA is between 1 and 20 now (was 512 in May). I am working with the nephrologist who saw me while I was in the hospital. I was working with a rheumatologist but we disagreed about treatment and I found him to be difficult to work with.

    My nephrologist is up to date on latest treatments. He has experience with Wegeners and is working with other people who have it. He, and his office, are responsive. He shares articles with me that he thinks I will find helpful. He explains bloodwork. He is allowing me to make choices (within reason) regarding my treatment. I feel that he has a good handle on the disease. He also said that there are others in his office with experience should we encounter something challenging.

    I don't want to jinx anything, but I feel pretty good right now. I feel so much better than I have for many months.

    Is Cleveland still something I should consider? I don't feel like I need to go, but everyone here has such positive things to say about it that I doubt my decision.

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    The biggest thing you get at Cleveland Clinic is research and experience in studying and treating Vasculitis. I see Dr Villa Forte there. She sees a dozen Vasculitis patients every day she works. I was diagnosed at Ohio State - a major teaching hospital - and they only see a few dozen Vasculitis patients in a year.
    Last edited by Pete; 08-14-2015 at 05:39 AM.
    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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    csjknits, it sounds like you have done amazingly well in a short time, compared to many of us. Your nephrologist sounds very good and capable of handling the kidney aspects of Wg, and may have good general knowledge about other types of involvement. There is always the possibility of relapse/flares when you try to reduce meds, or if you come off of them completely. Flares may involve other parts of the body than the original ones. It would be good to have a competent rheumatologist, whom you get along with, to oversee your case. Some people just go to the CC or other specialist center once or twice a year and then manage the rest of the year with their local docs. If it is feasible, it might be a good idea to give the CC a shot, for the reasons Pete listed above. Especially if things should start to take a turn for the worse, even a little bit. The CC docs can look at your treatment history and current issues and give recommendations. Having their input could reassure you that things are on the right track. Best of luck, and I hope the good progress continues and you can avoid future flares.
    Anne, dx'ed April 2011

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    Also as a side comment. CC will be willing to work with your current doctors as well. I come up from Columbus to see them and I wouldn't exchange their knowledge for someone local now in regards to the Rheumy end of things. I have seen a Pulmonologist in Columbus and Cleveland and feel very good with either option.

    If you don't have a Rheumatologist you really feel good about I'd say see CC for a Rheumatologist and keep your current Nephrologist that you like. But that's just my opinion.
    ~ Bob

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    I think the most likely outcome is they would confirm that you are getting good treatment. Such consultation at Cleveland Clinic would also serve to make future consultation easier in the unlikely event you should develop some new problem in the future. You might also be able to join some research projects at Cleveland to assist in learning about how to treat Wegs more effectively. I do this at Mayo.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Hi and welcome to the group ! That is great that you have a dr. that is good and seems to have a handle on things. My kidney dr here is also good (although ...thank god ,I don't have kidney envolvement ) But you will find as time goes on that your list of drs. will grow. It is good to keep a check on things before it attacks,such as an ent, a pulmy, and an opthromalogist. Where at in Ohio do you live ? I am in Youngstown and I also go to the clinic although I see Dr. Carol Langford there. I just think she is wonderful ,as well as knowledgeable. Whenever I have a question she will get back with me that day and always says if I need her to call. And there has been a couple of times where she has called me to see if I am o.k. since my #s may have gone up a little. I personally think you should get established with one of the reumys up there just in case your dr needs a consult they are aware of you. Good luck on reaching remission.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Thanks everyone!
    I do have an ENT that I have been seeing for 5 years. I also now have an ophthalmologist since I had uveitis and iritis prior to hospitalization. I had a great pulmonologist in the hospital but I (thankfully!) did not need follow up. I think a rheum at CC would be the greatest benefit.
    I live in Western NY, not Ohio. About three hours away.
    I know I am lucky at the moment. The plan is to switch to Immuran in a few weeks and I am terrified. As much as I hate cytoxan, it hasn't been all that bad and it worked.

    Corrie

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    Corrie,the one thing about ctx is that long time use can cause cancer. And also before taking Imuran there is a blood test they need to give you to make sure you are able to take it. Again good luck
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Hi Corrie,

    I echo Debra's advice about cytoxan and immuran. One of the long-term side effects of cytoxan is bladder cancer. So stay hydrated and urinate as soon as the urge arises.

    When I was switched from cytoxan to immuran, I was not given the blood test. I had a terrible reaction that caused a major flare coupled with pneumonia. I was pretty much out of it for 3-4 weeks. Found this forum about then and got a specialist at Cleveland Clinic to treat me. On her first examination, she said I was lucky to be alive.
    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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    Believe me, I know about the potential side effects of cytoxan. That is why I am so anxious to get off it. That, and I am really tired of losing so much hair. The plan for now is to try Imuran and keep rituxan if needed in the future. I am at high risk for relapse due to the severity of my disease and some other factors.

    Is the blood test separate from what is in the regular bloodwork I do?

    I really appreciate all of your advice! It's nice to have other people out there going through the same thing I am.

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