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Thread: Infections

  1. #1
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    Unhappy Infections

    Hi,
    I am feeling exhausted the past days, "heavy", aching all over, empty of energy (physical one, I am still having enough mental energy, as you can tell ). I am passing the day like Baron Munchausen pulls himself out of a swamp by his hair….


    First I was thinking that the RTX IV that I got this month is the cause for that, but after getting wise advice I did blood & urine tests. CBC shows infection. urine shows that it is there. My GP said we will wait for the urine culture to come back, to decide which antibiotic is the right one. I hope it will come tomorow.
    B4 that infection I had ear infection (mild one),& b4 it I had throat infection, & b4 it I had another bladder infection, & b4 another ear infection (not mild), not counting colon infections… and each needs another antibiotic…

    It seems that the RTX is doing it's job well since my WG symptoms are diminishing (I hardly have impressive boogers to take a pic lately ) but I guess that it also means greater susceptibility to infections ?
    is there something that can be done to prevent them ?
    In my first years of wg I was taking sulfa until it elevated my ALT (liver enzyme) and my doc told me to stop it.
    In addition, I guess I am going again to get macro dantin like in the 2 last infections I had b4, BUT I remember vaguely someone here writing against it ? Rose ? someone else ?
    Thank you for being here.
    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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    Oh Alysia, you poor love.
    I'm so sorry to hear that you are getting these continued infections........but I'm glad your doctor is onto it.

    I guess the RTX is doing it's job too well, and has reduced your immune system to a level where you are going to pick these bugs up.

    I am not certain as to what antibiotics or what precautions you can take to prevent these happening - I'm just sorry that they are

    I hope someone comes along with some words of advice - soon
    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

  3. #3
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    thank you so much, Michelle you are always so kind, not only "keep smiling" but keeps the other one smiling as well, no matter what I love you

    what you wrote about the rtx working TOO well, raises more questions:
    can there be "too much" ? how can we know ?
    maybe I shouldn't take MTX in addition ?
    thanks anyway.
    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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    Alysia,I'm sorry you are ill I didn't know you were getting all those infections after your rtx. When is your culture supposed to be back ? What has your dr. said about the mtx. Are you still working ? Maybe you should wear a mask or scarf over your face for awhile until your system is not so suppressed and wash your hands alot.Go grap a blanket and your cats and take a "cat nap" and hopefully you'll feel a little better. Also drink lots of fluids to flush yourself out. I love that pic you posted,today I feel like the horse after that morphine yesterday!! Hope you feel better soon and they get you on antibiatics. Be sure you can take them with your mtx. I know the ones my mother was on came with a print out and 1 of them said not to take if on mtx...so ask the pharmacist,they know best.Sending you prayers that you feel well soon.
    Life isn't about how you survive the storm, but how to dance in the rain !

  5. #5
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    Alysia,
    Sorry to hear you had a lot of infections. I was not on rituximab, but on cyclophosphamide iv. I do not remember exactly the dose, but I think I had 1,400 mg cyclophosphamide intravenous every month. With God's help I ended by something like 19,800 mg total after this IV therapy. Now on aza, and my doc says it is enough for now. During IV therapy I had only one serious infection - my right arm from inner shoulder to forearm and even palm got stricken by herpes. I still do not understand how this could happen, I always thought it was sexually transmitted infection and I never been into serious relations before. My guess is that it is actually not a bad sign - it means rtx is doing its job well. But you having so many infections makes me think rtx should be stopped or lowered. Do you take azathioprine and how long have you been doing rtx? I really would like to know. About infections prevention - I can't say nothing, it is obvious you are having them because of weakened immune system but then again you need to keep this level to forget about WG symptoms and the only way of preventing any infection is immune boosting therapy.
    I wish you to stay healthy.

  6. #6
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    Quote Originally Posted by Alysia View Post
    Hi,
    I am feeling exhausted the past days, "heavy", aching all over, empty of energy (physical one, I am still having enough mental energy, as you can tell ). I am passing the day like Baron Munchausen pulls himself out of a swamp by his hair….


    First I was thinking that the RTX IV that I got this month is the cause for that, but after getting wise advice I did blood & urine tests. CBC shows infection. urine shows that it is there. My GP said we will wait for the urine culture to come back, to decide which antibiotic is the right one. I hope it will come tomorow.
    B4 that infection I had ear infection (mild one),& b4 it I had throat infection, & b4 it I had another bladder infection, & b4 another ear infection (not mild), not counting colon infections… and each needs another antibiotic…

    It seems that the RTX is doing it's job well since my WG symptoms are diminishing (I hardly have impressive boogers to take a pic lately ) but I guess that it also means greater susceptibility to infections ?
    is there something that can be done to prevent them ?
    In my first years of wg I was taking sulfa until it elevated my ALT (liver enzyme) and my doc told me to stop it.
    In addition, I guess I am going again to get macro dantin like in the 2 last infections I had b4, BUT I remember vaguely someone here writing against it ? Rose ? someone else ?
    Thank you for being here.
    I had frequent bladder infections that started when taking CTX and continued afterward till a doctor put me on trimethoprim antibiotic to prevent them. It is Bactrim without the sulfa part and I haven't had one since. It is often used to treat or prevent bladder infections. I also had an operation a year later to reduce urine constriction and that also helped a great deal since I could then empty my bladder much easier and completely. No bladder infections now for almost the past couple years.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I'm glad to hear your WG symptoms are improving, but I'm sorry to hear about the current infection. Rituxan does weaken your immune as it depletes the B cells (a type of white blood cell). B cells help the body fight infection, so Rituxan can increase your risk of infection. I take Bactrim to help prevent infections. I'm not sure if you are taking that or something similar, but I would recommend it. I hope your labs come back soon so you can start the antibiotics and feel better soon.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    So sorry you are having all these infections. I hope you have the results of the culture & can get the right drug today!!!!!!!!!!!!!!!! Feel Better!

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    What is macro dantin Alysia? I didn't know you have had 2 other UTIs in the past year..... I hope the culture results come back soon. I'm not sure anything can be done to prevent the UTIs.
    Phil Berggren, dx 2003

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    I'm so sorry to hear you're not feeling well, Alysia. My hubby, Steve has been battling aches, stiffness, & fevers lately. I appreciated your kind words of encouragement, and well wishes for my hubby. I wish you the same that you will get answers soon, and they can figure all this out for you. Sounds like you have a great team in treating your Wegener symptoms.

    Waiting is the hard part! I had no idea you can get elevated liver enzymes while taking a sulfa antibiotic (Bactrim). Makes me sad that my hubby is severely allergic to Bactrim, and can't take it. Hopefully, you can get back on a good antibiotic to prevent these infections from coming back.

    Sending you BIG hugs and tons of ENERGY from Washington State!
    XoXo LeAnn

    Steve, dx September 2013

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