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  1. #1
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    Default New Memeber

    Hi everyone my name is Sandy. This is the first time I am posting my personal story and journey with GPA. Last year in May I started having face pain that I kept attributing to a Sinus Infection, and had gone to three different doctors and each of them told me they see no sign of an infection but went ahead and gave me an antibiotic, the last two also gave me the steroid pack. By end of June I was in awful pain and was not getting any sleep, I was finally told by my ENT that this was neurological and needed to go see a Neurologist. Finally was able to get into one late June and they put me on Gabapentin. I also got in with my PCP and he sent me in for blood work. Before I could get back with my PCP on my blood work I started having pain while breathing, I could tell it was with my lungs. Ran to my PCP and he told me he thought I had GPA and needed to go the emergency room and have a CT done on my lungs. I spent 25 days in the hospital with getting a confirmed diagnose after a lung biopsy was done on the infection in my lung. I also had several other infections in my body and was put on Vancomycin for several weeks. This in turn this caused damage to my Kidneys. They started me on Rituxan right away in the hospital. While I was in the hospital I started getting numbness in my fingers, toes, and left foot. I also lost 30% of my hearing in both ears, and now wear hearing aids. And of course I was put on 60 mg of Prednisone, along with many other drugs for blood pressure, and supplements. Before this I was not on any maintenance drugs and was pretty healthy. I live in the Orlando, Florida area and was very fortunate to get in with one of the best Rheumatologist in the area, and she has had patients with GPA.
    In the fall they started lowering my Prednisone and eventually put me in Imuran 150 mg. I did another course of Rituxan in March this year. My Neuropathy has gotten worse in my left foot/lower leg, and now on 150 mg of Lyrica 2xd. I have also started joint pain which my Rheumatologist says in not arthritis so it has to be neurological. All my other organs that were bothering me last year are doing ok, my Kidneys are maintaining, my lungs have improved, and my heart is strong. My Rheumatologist is trying to decide to do Cytoxan for my next infusion instead of Rituxan, she is afraid the Rituxan is not getting to my nerves. So right now they are setting me up for a nerve biopsy to see if GPA disease is still in my nerves. If it is then she will do the Cytoxan infusion instead of Rituxan.
    The Cytoxan scares me because of the side effects. Has anyone here had a nerve biopsy? As well as going through Cytoxan and what effects did you have?

    Sandy

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    Default Re: New Memeber

    Welcome Sandy...many many experienced peeps on here with info we can all use. I have neuropathy in left foot, and right hand tips of fingers...neither bother me much cept I trip sometimes cuz of foot. It's permanent. Drugs won't help with neuropathy. I'm not sure what a nerve biopsy consists of, but general thought is if the nerves aren't self repairing within 6 mos. or so, they won't ever. I have it, I've witnessed it in many sports injuries, and know many peeps with it. Just doesn't go away...massage helped some repair over time, some physical therapy helped me be more aware of the numbness, but didn't do much for it. Nerves have to repair themselves, or not. Also, if your doc is not sure which drug to use, then I suggest the doc review the drug effects charts!!! Nice to take the lesser drug, but WG should be attacked asap. Rituxan does that, IF needed. And, R seems to have less outside effects than C. Just an observation of peeps talking on here and docs' advice/threats!!!! LOL Anyway, best to you and keep on keeping' on!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Default Re: New Memeber

    Hi Don,
    Thank you for your response. I think my Rheumatologist is worried since I continue to get more symptoms with my nerves, not so much that I still have symptoms. My Neurologist says the same as you that I just need to be patient to see if my existing nerve issues will repair itself. The neuropathy in my left foot is severe, and before the increase of the Lyrica I could barely walk very far before my foot was hurting. He said he had one patient who's toes where black from GPA, and after a year they were back to normal. I am curious what the nerve biopsy will say and as well being patient.
    Thanks, Sandy

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    Default Re: New Memeber

    Hi smiley Sandy and welcome

    Sorry that you have to be here, but you have found the right place to get some amazing advice from people who are not doctors, but who live with the disease 24/7

    I totally agree with Don, plenty of massage, and an even bigger abundance of patience.

    Best of wishes with your treatment
    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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    Default Re: New Memeber

    Sandy,
    I'm sorry you are going through the nerve pain. It sounds like you have been through a lot already. I hope you get some resolution to your nerve pain. That's the worst kind of pain.
    I have Small Fiber Neuropathy, and it is caused by Wegs. They told me to keep my Wegs under control and that would control the nerve damage. I wasn't put on CTX, until I was out of all other options. My thoughts are that they, meaning my Rheumy, should have hit it hard in the beginning and I might not have had to still be on steroids 8years later. My point is, please be diligent in getting the proper treatment to knock the block off of GPA.
    Welcome to the best place ever for helping us all get, knowledge, and comfort from fellow warriors.I'm wishing you all the best!
    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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    Default Re: New Memeber

    Welcome to the forum, Sandy, and thank you for sharing your story.

    Sounds like your wg is still active. Sometimes it takes 2 rounds of rtx (6 months or 4 months between) to calm down the wg activity.

    As for nerves biopsy, not sure, but maybe this thread can give some related info, although its more about brain biopsy : https://www.wegeners-granulomatosis....-Brain-Attacks

    I was not on ctx but those who take it, get a medicine to protect the blader. Ask about it. @Aneinu can say which med is it.

    Good luck and please update us.
    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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    Default Re: New Memeber

    I think it's zuritac.

    Wishing you the best.

    Sent from my SM-G920V using Tapatalk

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