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Thread: Help-- finding a doctor, diagnosis, eyes

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    Default Help-- finding a doctor, diagnosis, eyes

    My sister is in the process of being diagnosed and we are totally overwhelmed. Her main symptom has been problems with her eyes (red, irritated, inflamed etc.). After some blood tests, her specialist (a fancy eye doctor... his exact title I cannot remember) tentatively diagnosed WG and ordered a chest/sinus CT scan and more blood tests. While waiting for the insurance company to authorize the CT scans, the blood tests have come back with further confirmation of active WG. We are returning to him on Thursday to hear the next steps. I have several questions:

    --He is a an eye specialist... are others treated by eye doctors if that's where their symptoms first present?
    --I think he's a good doctor but he's 2 hours away. (He's in Boston, we're in Western MA). He mentioned infusions... Would it be better to try to find someone closer to home who may not be such an expert or go to someone expert but inconveniently located?
    --Have others gone the infusion route? If so, could you (briefly) describe the process? How many over what period of time...

    We'd appreciate any words of encouragement or wisdom. I can relate in some ways as I have Crohn's, Psoriasis , and now PCOS, but WG is a whole new world. I started reading information online and found it completely scary and overwhelming!

    Thanks,
    Stacey
    Western MA

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    Hi Stacey,
    Welcome to this forum. It is so nice that you are helping your sister. First , I would like to say please don't be too scared by what you read here. Remember , this forum is largely composed of people with active disease and serious problems. Lots of those who get to feeling better and get back to a pretty normal life don't hang out here too much. So, you are seeing a select group who are dealing with ongoing problems.

    I hope others in your neck of the woods will weigh in on where to go but my own idea is that your sister will next need to see a Rheumatologist. A Rheumatologist is usually the one to co-ordinate treatment and communicate with the different specialties like the eye doctor. I have never had a specialist take charge of my WG treatment although your eye doc does sound like he knows what to look for from what you have said.

    I would make the extra drive to seek out the best WG doctor but you might be able to schedule the infusion some place closer to home.

    I'm not sure if you are talking about Cytoxan or Rituxan but either way it sure would be more convenient to get this closer to home. Having said that , if it is Rituxan she would most likely only get two infusions spaced two weeks apart and then no more infusions for six months. So the drive would not be that bad. If it is Cytoxan the infusions would be more frequent and would be done for several months - most likely. I myself drive two hours to get my infusions mostly because I've been going to the same facility since 1980 for treatment and they have all my records and I know my way around. Well, and they are competent too with a nice tea room.

    Early on I would tend to try and find the most knowledgable and experienced doctor you can and then as the disease gets under control and you all get more familiar with it you might find someone closer to home that could give you treatment. Starting treatment as soon as possible is very important. This disease can move slow or very fast- we don't want to find out which by delaying treatment.

    Have you checked out the Vasculitis Foundation web site? One thing they offer is consultation with WG experts. Your doc can call one of the consultants for free. I see there is a doctor listed in Boston that I am not familiar with at the Vasculitis Center there-- VF Medical Consultants

    Check out the whole web site, there is a lot of good info there. And keep coming back here to let us know how things are going and ask any more questions.

    And please do be encouraged. WG is considered to be chronic but manageable. Many people get treatment and go on to lead very normal lives. Treatments and knowledge have really come a long way since I was first diagnosed in 1980 (back in the dark ages of WG medicine- before the internet)

    What medications is your sister currently taking?

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    Excellent reply Me2 !

    Fran dx 1989 (relative newbie compared to you)

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    Thank you Me2 for the encouraging reply. I am checking out the website right now! She is currently taking a lot o f eye drops and one oral medication... not sure what. I'm thinking that will change tomorrow. It seems from what I read that we should find a rheumotolgist to manage it instead of the fancy eye doctor... he said he had many WG paitents...???

    So you can drive after the infusions or does someone go with you? I can go the first time with her, but after that I'm not sure I can with work etc.

    Thank you again!

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    Sorry you had to find us Stacey, but the information you need is here. Me2 is spot on with regards to Rheumy overseeing your sisters care. However my ophthalmologist is also an MD, I see the Rheumotologist for oversight. No pun intended. I am just South of Boston and would recommend the drive and have your Doc communicate with the specialists. Boston Medical Center has a top Vasculitis Department as does Mass General. I see Dr. Paul Monach at BMC and am very happy with the care. I will tell you I don't see him too often as I am in remission presently but do have an upcoming appt in August. Any way, take the trip to the big city and then receive treatment locally. Best of both worlds. Good luck to you and your sister. Remember, we are all different in this journey, I am one of the lucky ones to get to remission fairly quickly, not common but it does happen.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    I'm so glad someone close like Dale was able to respond. Your eye doc may very well be very competent but it would be ideal if you could see Dales Dr Monach or someone referred by him.
    The oral medication your sister is taking is probably prednisone. This an absolute life saver and curse all rolled into one.

    Prednisone halts the progress of WG but does nothing to treat the actual disease. It buys time for other treatments to have a direct effect - treatments like Cytoxan infusions or Cytoxan taken orally , daily. Or , Rituxan, or some of the less harsh treatments like Immuran, or methotrexate etc. The Rheumy is the one that decides how big of gun is necessary. But what IS necessary is to begin one of the primary treatments as soon as possible so she can begin to reduce prednisone as soon as possible.
    The longer she takes prednisone the more likely she is to have side effects from the prednisone. Your good docs will of course know this.

    It sounds like you are doing very well in getting information and moving forward with getting effective treatment. Oh, as to the infusions. Everyone is different, and I don't really know about other peoples experience but I have done months of Cytoxan and also had many Rituxan infusions in recent times and I drove myself to all of these. I felt the most sick after Cytoxan but a two hour drive was plenty of time to get home before I started feeling bad.
    My guess would be that if your sister feels good enough to drive there she should feel ok to drive home. It is not a procedure where a driver is required by the clinic. If you can go with her the first time that is fantastic. I had someone go with me to my first Rituxan infusion because I was really scared. This was when Rituxan was still a very new treatment. Now, my biggest dread is how to deal with the boredom of the infusion. == books, magazines, computer with wi-fi, food, these are what I take. Rituxan is a slow infusion that takes about 5 hours.
    Whichever type of infusion she gets the first one is by far the scariest.

    Best of luck and keep in touch here if you get the chance.
    Kirk

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    In my case the treatment included Prednisone, Cytoxan, Bactrim, Omaprozole, and supplements. I would get to a rheumatologist as soon as you can. Me2 is correct in saying if she is taking prednisone it will start to mask symptoms but does nothing to halt the true problem. It also would be optimal for someone to be able to go with your sister to her appts. Four ears are much better than two. As time goes by and the WG gets controlled, the time between appointments will get longer. I have not seen Dr. Monach in a year and a half. Saying that, still have to stay incredibly aware of what our bodies are doing, ever vigilant looking out for a flare. By the way I did not have infusions, simply a pill of CTX.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Welcome, Stacey. I'm glad you have found us and are there for your sister. I, too, took CTX by oral pill rather than infusion, and it worked very well, and fast. I'm now on methotrexate and continuing with prednisone and Bactrim. It will be up to her doc, of course, and I'm glad Dale chimed in with his recommendation of Dr. Monach; I'm on the west coast but have heard good things about this doc from more than one person, I think. Or any other rheumy at the vasculitis center there would be likely to be good, as well.
    Anne, dx'ed April 2011

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    I'm pretty sure that Boston will easier to get to from western Mass than NYC but if you think that would be fine then I recommend Dr. Lebovics (ENT). Dr. Shapiro is a rheumatologist in NYC with lots of wegener's experience. He recommended an ophthalmologist in the city as well but I can't remember the name.

    I'm in central CT so Boston is easier to get to but I wasn't aware of a good ENT in Boston at the time so I went to NYC instead. I see my local rheumatologist (diagnosed me) but I make the drive to NYC to see the ENT every 3-6 months. My rheumatologist essentially directs and coordinates my care as I see her at least every 3 months. Depending on your sister's involvement, she may have a different doctor coordinate her care (nephrologist if primary problem is with kidneys, ENT if major issue is sinuses, etc.).

    She's lucky to have such a good sister to look after her.

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    don't be too scared by what you read here
    me2 had an excellent response, but just wanted to add that you shouldn't totally scared of what you read on the net in general. Much of the info/studies is "worst case".
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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