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Thread: Feeling Lost

  1. #1
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    Default Feeling Lost

    I don't know what to do. I'm really trying to be healthy and head down the right path ... but now my body is putting it's foot down and resisting my efforts. I feel .... terrible!!!!!! I'm nauseous but I'm only nauseous because I am terribly dizzy. My eyes feel like they are crossing and I struggle to focus.

    But, when I emailed my doctor, asking if we could test to see if my B cells came back so I can do another round of RTX (it's been 7 months), she says I have to come down and see her and we will talk about "if" we do another round. WHAT? For six months I felt amazing. I was feeling better than I had in a long time ... why wouldn't we do another round? I don't care about what the potential long term side effects may be ... I only care about right the fudge now and how I get through day to day. It worked. It is the only thing that has worked!

    I have an appt. w/ her on February 1st. I have my labs done on the 30th. In the mean time, I just feel absolutely terrible. I woke up throwing up the other night and the only thing we can think it is ... is that I have been having bloody noses overnight and I have been swallowing blood and mucous. I know about the bloody noses because every morning when I clear my throat, I spit up a wad of bloody mucous. YUM! I have joint pain again, which makes it hard to maintain this active lifestyle I've created for myself. And, I weigh 63 lbs less than when I did my last infusion so I have less weight on this body so don't blame the joint pain on that!

    I want to go home sick from work right now because I keep spinning. I keep struggling to get my eyes not to feel like they are crossing. I get nauseous from the spinning room. It's just not fair.

    I guess I just feel sort of trapped for the next 12 days. I've run out my sick time being sick with these dizzy spells over the last month. It's not like I can just go home.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Sorry you feel so crappy but your doctor has a point that without a current assessment she cannot recommend the appropriate course of treatment. That is for her protection and yours too, although there is a very good chance that your assessment is correct. In that case additional treatment will be appropriate and she can then provide it in a timely fashion. If your distress is extreme now, ask about getting in to see her sooner.

    My Weg expert at Mayo and my other treating doctors for Wegs have assured me that if I have serious symptoms, they will see me STAT or ASAP or get another colleague to see me if they are not available. I have also had some med changes or additional meds too from phone consults like last weekend. I got an antibiotic prescribed Friday night after talking with the doctor by phone about my symptoms (extreme pain) and I already felt better by the time i saw the doctor on Monday morning.
    Last edited by drz; 01-21-2017 at 07:29 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I'm with drz, call your doc and ask for an immediate appointment. You need to be seen and evaluated. Down 63 is amazing!!
    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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    Nik, drz is right inasmuch you need to follow doc's orders. On the other hand, you need to get in, so keep calling...every day, every morning...that's how I got into Mayo. Do you have any pred lying around? Take some till you get in. Another bump...you'll get it right soon. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    I get rtx every 6 months. If I am late even a bit, the wg beast raises its head. I think you might need to get it already. 7 months are enough.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #6
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    My concern was her thinking we'd "try something else". No thanks. I want to use what's working. The 1st was her first available appointment so I am going to stay with it for now. At the very least, hope would be on the horizon. When we decided to go the RTX route, I was in for my infusion within a couple days. So ... I know that maybe it's just a couple weeks away!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  7. #7
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    My doc says that he has people going six months on Rituxan but also has people who can't make it to six months. I recently (about 4 months ago) was doing pretty well so I thought I would see if I could go 6 months. Big mistake.

    I crashed at 6 months and then it took me a long time to recover because of course the Riuxan takes a while to work. I still feel I lost ground by getting a flare. I spent many weeks laying on the floor sick. I'm looking forward to my next infusion at 5 months. He says he has a patient that was on Rituxan for three years and then went drug free. It is looking to me like it is important to be a little aggressive with treatment and avoid flares. I know that 40 years ago I was on Cytoxan for two years and then after that had a drug free remission for about 20 years.

    My doc definitely sees my prednisone use as worse than Rituxan. He would rather me risk the Rituxan than keep increasing my prednisone for flares.

    I hope you get in soon and get back to where you were quickly.

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