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Type: Posts; User: drz

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    Re: hearing and vision loss

    Inflammation of eyes and eyelids is one of my main symptoms of Wegs. When i took higher dosage of pred meds to try preserve my hearing my eyes were much better along with other symptoms like nasal...
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    Re: hearing and vision loss

    My hearing will be tested again next month. So far it is still adequate for most things.
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    hearing and vision loss

    Has any one here lost all their vision or hearing from
    Wegs. Or know any one who has anyone got a Cochlear implant for hearing.

    I lost most of my hearing at time my diagnosis. It wiped out...
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    Re: New member diagnosed 8 months ago

    Inflammation of the eyelids is my main residual symptom of GPA. It does affect my vision as it compounds my dry eye problem and the side effects of Rocklatan eye drops I need to take for glaucoma.
    ...
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    Re: Rituximab and the new Covid vaccine

    If your immune system is very suppressed you might not have any reaction to the vaccination except a prick in the arm. So then you derive no benefit from the vaccination. The risk is though on the...
  6. Thread: Been a minute

    by drz
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    Re: Been a minute

    Andrew

    Those are good tips. I use them too. Another one I would add is to call some one to chat or go visit some one in person if you can. Focusing on some one else gets your mind off your own...
  7. Re: immune deficiency treatments and causes (probably caused by GPA treatments)

    i just started getting monthly IVIG infusions. The hope is that this might help me avoid the frequent infections I get from having a suppressed immune system. At present we have to suppress our...
  8. Thread: RTX Efficiency

    by drz
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    Re: RTX Efficiency

    There are many people who have been on RTX for years. some doctors think it may become less effective over the years but may continue to use it since they feel it is best treatment option. There is...
  9. Re: Mum recently diagnosed with GPA This is my first post and I would love some advic

    You are lucky she got an early diagnosis before there is a lot of body damage. Today there are a lot more treatments available. The doctor will use whatever treatments they think are most...
  10. Rituximab-induced lung disease: a systematic literature review

    Rituximab-induced lung disease: a systematic literature reviewInteresting article about some side effects of RTX.

    https://erj.ersjournals.com/content/35/3/681
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    Re: RTX and heart damage

    My rheumatologist ordered the RTX after the cardiac evaluation was done. He did an electrocardiogram which did not suggest any heart disease. I will get the RTX probably next week. I also get IVIG...
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    RTX and heart damage

    Has anyone heard of heart damage being caused RTX treatment. I have heard of one person getting RTX for cancer who had heart damage from it. My rheumatologist ordered a heart evaluation for me...
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    Re: Azathioprine Side Effects

    I have seldom been off all prednisone except for very brief period. I need it to control some of the GPA residual effects even when I am considered in a drug induced remission.Tavenos gave me a lot...
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    Re: Losing patience / covid

    My situation is about the same. I wonder how much the IVGA infusions will help us. I had injections of it 60 years ago when we were injected in the butt with a big square needle and it made sitting...
  15. Thread: Ivig

    by drz
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    Re: Ivig

    i expect to start them soon. I think they will be like any other infusion or injection but somewhere in between them.
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    Re: Azathioprine Side Effects

    i took both for 10 years. Main side effect is higher risk of infection from suppressed immune system. Read the pamphlet for more info and asked your pharmacist since meds often interact with each...
  17. Thread: GPA - New Symtoms

    by drz
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    Re: GPA - New Symtoms

    Glad to hear you getting some more appropriate care for your GPA. GPA can simmer for years before it suddenly flares into a serious condition where more aggressive care is necessary. That is why we...
  18. Thread: GPA - New Symtoms

    by drz
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    Re: GPA - New Symtoms

    You are probably having a major flare of Wegs and need some aggressive treatment to avoid serious body damage. You can have other health issues too besides the Wegs that cause symptoms. A good...
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    Re: Evusheld is no longer effective

    Do is there any recommendations for us if Evusheld won't help us anymore?
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    Re: Kidneys Improved Big Time!

    I found my kidney biopsy to be a rather non event and actually slept through most of it. If the doctor has a lot of experience doing them it should be a minor discomfort and easier than many other...
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    Re: Kidneys Improved Big Time!

    Kidney test results are influenced by things like of level hydration. Often changes in their function are gradual so trends are important but there can be sudden changes that impair or damage them so...
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    Nasal crusting and nosebleeds

    Nose bleeds are one of my most common residual side effects of GPA even when i am considered in a drug induced remission. Often they happen with nasal crusting that is dislodged by blowing my nose....
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    Re: In remission, but increasing PR3

    Ask your doctor who has your history.
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    Re: New medication approved for ANCA vasculitis.

    I was on for a few months but developed a couple infections and had to stop it to treat the infections. After wards my treating doctors didn't think it was was worth the risk to try restarting it. I...
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    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    My experience was having several specialists that all made recommendations to the one doctor who weighed and balanced the recommendations and made the final orders for treatment. They often...
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