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Thread: Newly Diagnosed

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    Default Newly Diagnosed

    Hi, thanks for accepting me in this support group. Newly diagnosed, frustrated with this whole thing. I am an ER Nurse, I am suppose to take care of others, this is making it difficult. Sherry

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    Default Re: Newly Diagnosed

    Understandable that you'd feel that way. It is overwhelming at first, hard to get the right information on the disease and its treatment. You have come to the right place to find info, support and friendship from all of us who've been through it. Know that things will get better and you'll likely be able to return to something close to the life you had before this reared its ugly head. Ask anything, share anything, I'm looking forward to hearing more.

    Anne

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

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    Default Re: Newly Diagnosed

    Quote Originally Posted by sshiveley View Post
    Hi, thanks for accepting me in this support group. Newly diagnosed, frustrated with this whole thing. I am an ER Nurse, I am suppose to take care of others, this is making it difficult. Sherry
    Welcome to all the new members who have recently come on board. This is not a fun disease but this is a great site.
    I will reiterate what others have already said. You need a doctor highly experienced with Wegeners. For some, because of location and travel, it is not always possible. In the USA, some of us have received great care at Cleveland Clinic, Duke, Mayo and many more.
    I was diagnosed and treated for this disease for a year before I came to this site. In my case the docs suspect I had it for years and was misdiagnosed. Others were healthy right up until it hit. That said, I frequently mutter, this is the weirdest disease.
    All kinds of emotions will hit, fear, anxiety and yes guilt- what did I do to cause this.
    The symptoms and the remission vary widely. Some have it hit are treated and resume normal activities, others have it linger and do not return to work. In my case, I was retired, but busier than ever. I have learned to pace myself and avoid situations where I am exposed to coughs and colds, because I always ended up with bronchitis or pneumonia.
    Rituxin infusions have proven very beneficial for many of us. But here again, the treatment depends on the patient and doctor.
    No matter how great your doctor, the support and understanding you will get from others in this group is irreplaceable. Once someone came on and said he had itchy feet. Sounded weird. About six months later I had a sleepless night because of itchy feet, then I had a flare.
    One of the other things we discuss is the necessary evil of prednisone. Some can get off of it right away, others have to increase their dosage because of infection. In turn, it causes other health problems, such as diabetes, weight gain and pie face. The longer you are on it, the harder it is to get off. I am currently waging that battle and it has taken me 8 weeks to get down one mg. In the past, trying to go faster brought on an infection and an increase in prednisone.
    We also must be aware of our diets. Some find special diets, others just say common sense. Exercise is great, but if you are in pain, then donít beat yourself up.
    Lastly, be kind to yourself. Do what you can, when you can. I know this is easier said than done, but try not to stress. If you feel overwhelmed, seek professional help. Donít be afraid to say you are afraid. Usually objects in window seem bigger than they really are.
    We are here for all of you.
    Masha

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    Default Re: Newly Diagnosed

    Marsha- Thanks for reaching out, yes, I am one of those that question the how/what did I do to get this, I am very discouraged right now, tired of being tired and not feeling like myself, the symptoms are better but still there, frustrates me to no end, I am really blessed to have found this site, but working in the ER subjects me to all kinds of illnesses, ER is all I know. Thus has really thrown me for a loop, as I am sure it has every one here . Thanks again, Sherry

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    Default Re: Newly Diagnosed

    Marsha, I guess one of the many questions I have is how do you know you are in remission? I have had a round of Retuximab (weekly doses for 4 weeks) although I do feel a lot better, I am still having issues, my nose continues , I still have double peripheral vision in right eye, constant fatigue, and shortness of breath with exertion. I have a follow up appointments with the rheumatoidologist and pulmonary ( masses from Wegeners ). I have slowly weaned down the prednisone, now taking 15mg daily down from 40 mg until follow up with the Dr.s. With the decreasing doses of prednisone, my joints are starting to ache. Sherry

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    Default Re: Newly Diagnosed

    Quote Originally Posted by sshiveley View Post
    Marsha, I guess one of the many questions I have is how do you know you are in remission? I have had a round of Retuximab (weekly doses for 4 weeks) although I do feel a lot better, I am still having issues, my nose continues , I still have double peripheral vision in right eye, constant fatigue, and shortness of breath with exertion. I have a follow up appointments with the rheumatoidologist and pulmonary ( masses from Wegeners ). I have slowly weaned down the prednisone, now taking 15mg daily down from 40 mg until follow up with the Dr.s. With the decreasing doses of prednisone, my joints are starting to ache. Sherry
    Sherry, remission is hard to determine, since there are many blood tests involved. My C-anca has always come in higher than normal. I think the best way to tell remission is how you feel, doesnít sound like you are there yet. After my first series of Rituxan, I mistakenly figured I was going back to normal and I really overdid it. What I was really feeling was a jump in energy from prednisone during infusion. I ended up flat on my back.
    Here are a few things that helped me. Prescription Fluocinonide on Qtip for nasal crusts. I was directed from people on this site to get a Sinu Pulse machine. It is wonderful, far better than those ridiculous pots to irrigate. My ENT, who diagnosed me suggested I take Mucinix, you can get generic. I take one a day. For leg pain, I take an Epi Epson Salts bath nightly. Fortunately, I have a big deep tub. I only use half of what the bag suggests. When the pain is really bad there is Deep Blue Rub.
    My Duke doctor who is a specialist in Wegeners started me on three Bactrim a week. The members going to Cleveland Clinic are also on this. My doctor was on the team that determined 2 day larger infusions are as effective as the 4 day. She has seen everything, even Wegeners of the breast!
    I wasnít on this site very long before I realized I had a hole in my septum. Pure panic! Others who have had theirs turn into saddle back quickly responded and told me how they dealt with it.
    Are you currently working or on sick leave? Have you found a Wegeners specialist? I wish I would have done that in the first place instead of wasting time with a non specialist rheumatologist.
    Masha

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    Default Re: Newly Diagnosed

    The rheumatoidologist specializes in GPA, I really don’t think I am in remission either, don’t feel like myself at all, which is frustrating as I was always active. I was on sick leave for 2 months but now back at work in the ER. Co-workers ask how I am feeling and say I look great, I just smile and say thanks but underneath it all I feel terrible. I really hope I don’t blow my septum, can’t afford another surgery or time off if work. It all could he worse though, I see so many tragedies every day which keeps me in check. Sherry

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    Default Re: Newly Diagnosed

    I am also on Bactrim X3 weekly, but only 3 times a week how does this deter bacteria?

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    Default Re: Newly Diagnosed

    Quote Originally Posted by sshiveley View Post
    I am also on Bactrim X3 weekly, but only 3 times a week how does this deter bacteria?
    Itís prophylaxis for PCP pneumonia to which immunosuppressed people are more susceptible.
    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: Newly Diagnosed

    Thanks Pete, for some reason I thought I was taking it for my kidneys, good to know I am somewhat protected, especially with the people I come into contact with at work. Sherry

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