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Type: Posts; User: Peter Marsham

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  1. Re: Rituxan side effects two weeks later

    There’s a few different possibilities going here. I heard another forum member mention they felt queasy once after Rituxan. Personally I’m on maintenance doses as well, also 1x6 months, and haven’t...
  2. Re: Managing symptoms and treatment for a flare

    I have no idea if this may be related, but I was wondering if the itching occurs in the same spot each time? I’ve been experiencing recurring itchy spots on my neck for several months, sometimes I’ll...
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    Re: Gave Up on Facebook Groups

    Nice to hear you’re getting off the drugs! Your nephrologist is right, there’s no point giving an immunosuppressant if there’s no need. The Rituxan infusions pretty much come down to individual cases...
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    Re: Coronavirus and GPA

    I may ask my rheumatologist if he can check that after my next infusion (end of May/start June at this stage) . Second COVID shot is July 1. Remind me before then, otherwise I’ll forget.
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    Re: Gave Up on Facebook Groups

    Yeah, Facebook is not really a great resource for in-depth analyses of rare diseases. More likely than not, you’ll get roped into a group trying to sell you Activated Water or something (there are...
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    Re: Cryotherapy

    From what I’ve heard of cryotherapy, it seems a bit like the kinetic tape craze from a few years ago, but with more danger of injury. It probably will decrease inflammation temporarily, but it won’t...
  7. Re: How was my Health before coming down with GPA Vascular

    I was hit with a sudden pervasive rash and joint pain. No real trigger that I can pinpoint. Fortunately I live not five minutes from an excellent rheumy who got the diagnosis back within a few weeks,...
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    Re: Coronavirus and GPA

    I got my first AstraZenica jab ten days ago (phase 1B in Australia), then was told I should wait four weeks before getting the flu shot. I didnít know what to expect, felt like I had a headache (but...
  9. Re: New Here - Possible GPA with Nasal involvement

    Thanks me2, I thought it might have been you, but couldn’t find the thread. Hopefully it never comes to surgery.
  10. Re: New Here - Possible GPA with Nasal involvement

    Hereís the thing. Your specialist, no matter how good, is not living your life and experiences. If your sleep is being interrupted, and you have a collapsed nostril, there may be sinus issues...
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    Re: Suspected Sneaky Kidney Involvement

    yes, isn’t it strange and wonderful how this disease can appear in soooooo many different ways? Just makes me weep with joy at the variety of life.

    Generally, I wouldn’t trust anything I read on...
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    Re: Suspected Sneaky Kidney Involvement

    Skin irritation (along with joint pain) was one of my first symptoms. I had angry red rashes come up over my torso and upper arms, itchy as hell and no indication of their cause. A dermatologist did...
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    Re: Suspected Sneaky Kidney Involvement

    Dude, sorry to hear about the flare, itís something we all have to monitor for. Taking notes was a good idea as soon as you felt strange. In answer to your query; Wegs loves kidneys so much because...
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    Re: Coronavirus and GPA

    Just be aware the second dose can induce a stronger reaction, very flu like for a day or two. If so, that’s a good sign, means your immune system is working against the vaccine as it should. Just...
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    Re: Possible GPA flareup in the ear

    It sounds like it might be a syndrome called Long COVID, some recovered patients are reporting odd symptoms for months after the infection. Best thing to do is rule out Wegs first if thatís your main...
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    Re: Flare up and Rituximab route questions

    The worst part of Rituximab for me was manhandling the bag hanger into the toilet. Apart from that, it’s just a log boring day. I’ve never heard of anyone having any adverse reaction, though it’s...
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    For when youíre needing a pick-me-up

    Just click the link. I promise, itís not a Russian hack or anything....

    :rolleyes1:

    https://youtu.be/fn3KWM1kuAw
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    Re: Covid vaccins and WG

    Donít know about elsewhere, but in Australia we start rolling out mid February. Weíre vaccinating essential/health workers first, then over 70s and people with comorbidities, then decreasing risk/age...
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    Re: research so far indicates vaccine is safe

    Thanks for the info and link, makes good bedtime reading. Am I being presumptuous in thinking 2021 may just be a tad better than that other year?
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    Re: Coronavirus and GPA

    Hi Alyssa, nice to see you back, and good to see your family is getting good care. Just make sure you let us know if you grow elbow horns or get laser vision.

    weíre still waiting for the rollout...
  21. Re: UTI and antibiotics after RTX infusion

    I’m on prophylactic Bactrim twice a week for over a year now, with mycophenolate and bi-annual Ritux infusions. My rheumatologist insists on it. I don’t think off-the-shelf antibiotics will hurt you,...
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    Re: Question via email: Falls and tremors

    Good point, sinus issues can cause inner ear disruption, like when you get dizzy with a head cold. We all know Wegs likes the respiratory tract, so maybe there's a link that way with balance issues.
  23. Re: New User with no diagnosis. Looking for advice.

    Sorry to hear youíre being put through the wringer, mate. I have to agree with gilders, nasal biopsy is a good indicator but certainly not definitive. I had very little upper respiratory involvement,...
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    Re: New Member diagnosed in 2017

    My initial cANCA count was about 600 when first diagnosed, it’s now down to 4.7. Good enough that my blood tests are monthly now instead of weekly. Your numbers can and will vary as the treatment...
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    Re: Question via email: Falls and tremors

    I don’t have coronary issues, but have had some ataxia in my left leg which may or may not be associated with restricted blood flow to my hip joints. And occasionally I do get marked weakness and...
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