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Thread: Help Needed

  1. #1
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    Default Help Needed

    I had my RTX infusions in June and it is now mid-December and so far, my blood work shows that my B-Cells still haven't come back yet. I've started feeling a bit rummy and have a very swollen and painful lymph node on the left side of my neck. It hasn't progressed past just feeling off and the node being painful. It's been three days.

    My question is ... is my lymphatic system responding to the B-cells returning? Am I going to be sick? Those of you on RTX ... how slow is the progression of getting sick? Does it smolder and then hit you? Or is it right away? Because I feel like whatever this is ... it's brewing into something big.

    I hope everyone is well. I'm doing good on this program. I have lost 44 lbs and have been exercising over an hour a day. Except the last two days, and I am certain today I won't be exercising. I was up to 10k steps a day ... and now I have no energy to walk a little bit. It's rather frustratining. Everyone is telling me I need to just rest and let my body do it's thing but ... I also feel like I will fall into bad habits!!
    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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    It was explained to me that explaining b-cell rebound for people who are on Rituxan is counter intuitive.

    People whose b-cells rebound quickly are less likely to have more symptoms.

    People whose b-cells rebound slowly are more likely to have more symptoms.

    I have had very few symptoms the last three years. I've had other issues (broken foot, bad knee, etc.), but wegs has been quiet. I've had 14 RTX infusions now, and my doc will keep ordering them until there is reason to stop (FDA protocol changes, Insurance, etc.)

    RTX protocol is to have a treatment (2 infusions two weeks apart) every six months. Maybe you are due for another RTX round?

    I'd definitely go in to have the lump checked out!!

    Take care!!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    I'm at six months right now. Dr. B says she will reorder two more infusions when I start to feel crummy and my blood work shows that the Bcells have returned. So far, they are staying away. I get blood work again at the beginning of January so we'll see what the panel says then. I think it's just a swollen lymph node, judging by how I am feeling I think it's a slow brewing illness of some sort. Little worried about what i's going to brew into.
    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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    For me symptoms returned quickly. Within three days I was having a flare. I don't know if it is that way for everyone or if it would even happen that way again for me. I was on a six month protocol and kept falling apart at 5 months. So, my doc says he has other people who get Rituxan at 5 month intervals. I was feeling pretty good at 5 months so I decided to see if I could go longer. I got to 6 months and one week before I flared.
    In the future I am not going to wait and see how I feel. I've been getting beat up by this disease for too long. I'm going to get an infusion at 5 months no matter how I feel.

    My doc says he has a patient who received infusions for three years and then was able to get off of all meds. He wants me off prednisone before even thinking about getting off Rituxan.

    I feel for you. It is really hard to sort out symptoms sometimes and to know what to respond to - and how.

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    I get rtx every 6 months. I was late 6 weeks to get it and was out of remission. My wg dr. Says that it is better to get it every 6 months, no matter what. It is better, according to him, NOT to wait for the wg to raise its head. If we keep it sleeping long enough, there is a chance that the immune system will "reset" and will stop attacking itself. I know there is a controversy about this issue.
    As for the node lymph, it doesnt sound wg related, why do you think it is ?
    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.

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    I was really late in getting my rtx, a little over 4 months late. I went into a flare and had to go back up from 7.5mg preds to 20mg until I could get it scheduled again. I had all kinds of signs of a flare, but could not get in for the infusion. I now have to start tapering once again, which is very hard on a person. Please go with the six month plan, even if your numbers don't look bad, it still could be brewing up something. Take care of yourself and congrats on the weight loss and exercise program!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    I think we tend to blame everything on WG first and then are relieved when it isn't.

    My daughter has been very sick for the last three weeks, and she doesn't have WG.
    What she has, is a virus, that is apparently doint the rounds at the moment.
    Little to no energy, glands in her neck very large (I thought she had Glandular Fever, which she has had before), and a throat sometimes sore, sometimes not.

    Nikki, it could just be a bug that you have picked up somewhere.
    I hope it doesn't hang around you too long
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Could it be mumps??
    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

  9. #9
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    Quote Originally Posted by mishb View Post
    I think we tend to blame everything on WG first and then are relieved when it isn't.

    My daughter has been very sick for the last three weeks, and she doesn't have WG.
    What she has, is a virus, that is apparently doint the rounds at the moment.
    Little to no energy, glands in her neck very large (I thought she had Glandular Fever, which she has had before), and a throat sometimes sore, sometimes not.

    Nikki, it could just be a bug that you have picked up somewhere.
    I hope it doesn't hang around you too long
    Oh, I am sorry for your daughter, Michelle, and for you. You do seems less cheerful on facebook and here. I wondered. My daughter had similar symptoms few years ago and it was Infectious mononucleosis. They can find it in blood tests.
    I still pray for your daughters since the US trip of one of them. Hugs and love ♡♡♡
    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.

  10. #10
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    Thanks gorgeous. Not less cheerful, just very busy these past few months - working and renovating.

    We have pulled all of the carpets up throughout the house, we have repainted every room, and then re-floored with floating floorboards.

    It has taken a few months, in between working and moving furniture out of each room, sleeping on the floor etc, but it is now finished, just in time to get the Christmas tree up.
    I have been so sore, and so tired, but it has definitely been worth it. I can feel myself breathing easier already, now that the carpets are all gone.
    We also have the satisfaction of saying "we have done that".
    I would definitely do it again, but my husband is so glad it's over.

    Alysia, Infectious mononucleosis, is what we call, Glandular Fever. My daughter has had this before, so they knew it wasn't that this time.
    She is much better this weekend, still using throat lozenges, but managed to get her Christmas shopping done.

    Thank you for the prayers, the hugs and the love
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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