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Type: Posts; User: John S

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  1. Thread: Back surgery

    by John S
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    3
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    235

    Re: Back surgery

    the surgery was February 21. My legs remain very weak and I still need to use a walker. I’m beginning to believe my leg weakness is more disease related. Are there tests for this?
  2. Thread: Back surgery

    by John S
    Replies
    3
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    235

    Back surgery

    I had major back surgery (a laminectomy) 50 years ago, when I was in my 20’s. I have lived a fully active life since then, riding bikes, bowling, lifting and working. Late this Summer I started to...
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    Re: New member diagnosed 8 months ago

    I’ve been on Rituxin since 2017. I was able to slowly eliminate prednisone from my daily routine.
    Prior to diagnosis, I was treated for headaches, double vision, orbital pseudo tumors and sores...
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    Re: Aging and medications

    I get two infusions a year. In Spring I get it at Cleveland Clinic, in the Fall at Loyola in Chicago. I’m pretty sure they both use all the same meds. After a Cleveland infusion I am typically awake...
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    Re: Rituximab and the new Covid vaccine

    That’s what I was thinking.
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    Rituximab and the new Covid vaccine

    I had my latest Rituxin infusion at the end of September and I’m wondering when I should get a flu shot and the new Covid vaccine. Any suggestions?
  7. Thread: RSV vaccine

    by John S
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    4
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    1,501

    Re: RSV vaccine

    I had an infusion of Rituxin last Thursday. I think I’ll have to wait till December to get a flu shot or the new Covid vaccine.
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    Re: Confirmed Diagnosis

    I’ll be getting an infusion at Loyola in Maywood, IL today. I’m still getting 500 units every six months. Rituxin has done miracles for me. I rarely think about Wegeners.
  9. Thread: Been a minute

    by John S
    Replies
    5
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    1,703

    Re: Been a minute

    I sing, play ukulele and guitar. I also have the rc airplane hobby. These things help an awful lot.
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    Re: Long term Rituximab

    Do you take Bactrim?
  11. Thread: Hi, I'm Matt.

    by John S
    Replies
    4
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    845

    Re: Hi, I'm Matt.

    Hi Matt,
    By the time that GPA was finally diagnosed, I had given up playing guitar, ukulele and singing. My radio control airplanes were gathering dust. I stopped running a company that I had...
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    Re: Long term Rituximab

    Thanks for the update
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    Re: Seasonal Allergy Question

    My allergies kicked in 30 yeats ago, when I quit smoking. I guess the tar and nicotine were protecting my lungs.
    we have a cat so I use generic Flonase twice a day and take generic Claritin twice a...
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    Re: GPA - New Symtoms

    For my first visit to Cleveland Clinic, Dr. Villa Forte, I took copies of all my historic records from previous hospital visits. The good Doctor reviewed everything and had my biopsy tissues...
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    Re: Evusheld is no longer effective

    Masking, hand washing and social distance. They are not recommending drinking bleach…..
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    Evusheld is no longer effective

    CDC urges people with weak immune systems to take extra precautions after Covid subvariants knock out Evusheld
    The CDC urged people with weak immune systems to wear masks and practice social...
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    Re: Nasal crusting and nosebleeds

    I use a nasal rinse every day. My nasal crusting and headaches usually restart around 2 months before my next RTX infusion.
  18. Thread: Happy New Year

    by John S
    Replies
    4
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    738

    Happy New Year

    Wishing health and happiness for each of you in 23
  19. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I've had Evusheld in March and again in September., shortly after RTX infusions. I am getting my booster and flu shots generally three months later. That has kept me relatively protected.
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    Re: Daily life considerations and precautions

    I got the Evusheld shots 6 1/2 months ago and again at the beginning of September. I believe they are an effective defense.
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    Re: Eyes, Prednisone Blood Sugar

    The eye doctor examined me yesterday and said it doesn’t look like a webs flair there. Allergies.
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    Re: Losing patience / covid

    I had Evusheld months ago and am due to get another dose of it next week. I still get my vaccine boosters but I’m sure the Evusheld protected me much better.
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    Re: Eyes, Prednisone Blood Sugar

    I’ve been totally off of Prednisone for a couple years.
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    Re: Eyes, Prednisone Blood Sugar

    Before GPA was diagnosed, one of my earliest symptoms were eye problems. I described it as feeling like something was taking little bites out of the back of my eyeballs. I also started getting double...
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    Re: lumps on back of leg and one on foot

    Best to see a doctor. Dr. VillaForte told me to remain aware that every symptom I experience will NOT be related to GPA.
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