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Thread: What the Newly-Diagnosed Need to Know

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    Default What the Newly-Diagnosed Need to Know

    I thought I'd start this thread specifically to help the newly diagnosed. I find myself repeating a lot of things and would prefer to direct people back to this thread at least for some of it.

    I'm requesting that we keep the thread free from other topics. We all remember what it's like to be newly dx'ed--how hard it is to wade through info, especially when sick!

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    According to the Wegs specialists, the most important thing is to get a Wegs specialist right away. That's a rheumatologist who sees hundreds of Weggies and does Wegs research. There are very few in the world.

    Here are the different ways to make this happen:

    1) Best Scenario-- Establish yourself as a patient at a major Vasculitis Center
    The Wegs doc is your own doc and s/he oversees all your care. You have direct contact with them. Many people travel to a center a few times a year for ongoing care and have their local docs and facilities follow instructions accordingly. It works great. Major centers in the US: Johns Hopkins (Baltimore), Cleveland Clinic, Boston University, Mayo (Rochester).

    2) Next Best-- Have your local doc consult with a VF doc on an ongoing basis
    The Vasculitis Foundation docs offer this for free. Your doc has to initiate it. You have no direct contact with the Wegs doc, no way to ask questions. You're subject to your local doc's interpretation of the advice, his/her ego, wilingness to call and ask for help, etc.... Works fine for some people, but under the best circumstances you're still missing out. However, it is much better than not having a Wegs specialist on your case. If you're unable to travel to a center or have other issues (eg insurance), please consider doing this. If you're in the US, there is no reason not to have a VF consultant. If you're outside the US, check with the VF. Some of the docs in the US will consult internationally and there are also VF docs in other countries.

    3) Have only your local doc(s) on your team
    Many newly dx'ed members are so pleased that their local doc finally dx'ed them and maybe even saved their life, that they think it'll be okay. Even if you're at a famous hospital, and even if you're surrounded by a large team of doctors on your case, they don't have the skill to handle Wegs.

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    To get the ball rolling, in no particular order, I offer the following -

    Prepare yourself for a long haul - Wegener's is a life long condition and the journey will be full of ups and downs. With a little luck, this could include some very long periods of remission with few symptoms, but prepare to be disappointed by relapse should this occur. It can be treated and is just a setback, not a disaster.

    You may well find yourself taking a cocktail of drugs, many of which will have their own side effects and it becomes difficult to tell the difference between these and a Wegener's relapse. So if you find that you are having symptoms similar to those you experienced at the onset of your disease, act quickly to get it checked out. Wegener's can cause permanent and serious harm if not treated.

    It is normal to go through periods of feeling down about having this disease - you have every right to because you have been dealt a bad hand! However, it is not good to feel down all the time. If you feel like this, please seek help. You may well be suffering from an imbalance due to the drugs or disease which can be treated, or perhaps you just need someone to help you come to terms with the new situation you find yourself in. If nothing else then post your feelings on the Forum and you will at least get a surge of support.
    Last edited by Jack; 08-01-2010 at 02:05 AM.
    Jack

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    According to the top Wegs Docs at the Vasculitis Centers at least 75% or Wegs Patients relapse.

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    Also while on Cyclophosphamide (Cytoxan - ctx) one has to drink lots of water to flush out the cytoxan out of the bladder to help prevent bladder cancer which ctx can cause. I would recommend at least 2.5 litres a day. It would be best to take the ctx early in the morning and drink lots of water through the day so that you don't have the ctx sitting in your bladder over night.

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    Merkel from Boston says hearing problems are severely unappreciated by clinicians as a devastating effect of wg and other vasculitides. Says more research should be done. It is clear at the conference that hearing impairment is fairly routine - no one can hear anyone very well it seems and there are more hearing aids than canes (and there are several canes).

    JanW posted this on another thread.

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    Posting and running from the conference. New centers are being established as those who trained with one of the major centers spread far afield from their mentors. Univ of Utah is the furthest west. It is clear from this conference that both UNC and Mount Sinai in Toronto are considered on par with the majors. Cedars Sinai in LA is getting established as a center, and I met a ped rheumy fellow from there last night who dx 3 patients under 12 in the last month - one who had been sick for several years. Hospital for Special Surgery in NYC (my hospital) is considered good and the major rituxun study was done there (in addition to other places)

    If you can't get to a center, call one and try to get a recommendation of a doctor in your area. These docs know where their students and colleagues went when they left their institutions.

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    That is awesome Jan. Thanks for the info.

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    The docs all agree that they don't know what makes people flare or what keeps them from flare. Even people on rtx flare. What they all say is that 75 percent if us will flare at least once and 10 percent of us will never achieve a medicated remission and always have some signs of active disease (which can be controlled and is not necessarily destroying your body.

    This was posted by Jan in another thread. I find it interesting that you can have some signs of active disease and it is not necessarily destroying your body.

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    Quote Originally Posted by JanW View Post
    Posting and running from the conference. New centers are being established as those who trained with one of the major centers spread far afield from their mentors. Univ of Utah is the furthest west. It is clear from this conference that both UNC and Mount Sinai in Toronto are considered on par with the majors. Cedars Sinai in LA is getting established as a center, and I met a ped rheumy fellow from there last night who dx 3 patients under 12 in the last month - one who had been sick for several years. Hospital for Special Surgery in NYC (my hospital) is considered good and the major rituxun study was done there (in addition to other places)

    If you can't get to a center, call one and try to get a recommendation of a doctor in your area. These docs know where their students and colleagues went when they left their institutions.
    GREAT news!

    I'm hoping you'll start a new thread with everything you learned at the Symposium, Jan. I know you're taking notes like crazy and we really appreciate it.

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