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Thread: New Member : Husband Diagnosed in January

  1. #1
    Join Date
    Feb 2022
    The Natural State
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    Smile New Member : Husband Diagnosed in January

    Hello to everyone. I hope to connect with people here who can share their experiences with both the disease GPA, experiences with medications they've been given and their life stories fighting (Wegener's) this wretched illness.

    My husband is 76, his symptoms started with sniffles and congestion last September and finally led to a definite diagnosis of GPA in January all based on sinus issues. I am his wife and advocate, I've had MS since my 20s along with several other diseases caused by immune system over-activity so I'm very familiar dealing with lots of specialists, medications and constant testing.

    My husband was a very healthy individual with his only problem being high blood pressure until GPA came along. One thing I'm incredibly grateful for is the fact that all of our doctors and specialists have jumped right in to help my 76-year-old husband just as if he were in his 20s. There are many patients who can end up being not treated properly or at all if they have physicians who feel they're too old to bother with so I'm very glad that we have plenty of excellent specialists and research hospitals here in Little Rock.

    My husband's received a 1 gram infusion of Rituxin. He's due for his second infusion at the end of the month. He's done very well with the first infusion, other than saying that he feels a bit odd there haven't been any outstanding side effects.

    Since I've dealt with my own immune system diseases for almost 30 years it's natural for me to start checking which foods, vitamins, minerals and herbs should be avoided by GPA patients, especially if they are on Rituxan.

    I'd like to connect with anyone who has links to pages that provide dietary and supplement lists of vitamins/herbs/foods to be avoided by anyone with GPA or you may have your own experiences to share.
    I look forward to hearing from you and making some friends as I could definitely use someone to talk to as I work to provide the best support I can for my husband.

    (A wee bit about me, I've been a pro singer, songwriter and guitarist since I was 14, I've still got a great sense of humor and I love to meet new people).


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  3. #2
    Join Date
    Mar 2012
    Suburban Columbus, Ohio, USA
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    Default Re: New Member : Husband Diagnosed in January


    I hope your hubby is improving quickly. Iím 75 and 11 years in with GPA. Iím pretty healthy now and lead a pretty normal life for a guy my age. (Golf season is almost here.)

    A couple thoughts. I get 500 mg of rituximab twice a year. Itís kept me in remission since 2014. Your husband feeling funny may be side effects from the drug cocktail that is given with rtx. I am usually pretty wakeful (and very tired) about 6-24 hours after the treatment. I attribute the wakefulness to the steroid and the fatigue to the benadryl. Once these side effects wear off, Iím good to go.

    Is your hubby vaccinated against Covid? If so, rtx will probably erase his immunity. You may want to ask his doctor to order an anti-spike protein antibody test. If the test does not detect enough antibodies, he may be a candidate for Evusheld, monoclonal antibodies that provide prophylaxis against Covid. Itís a bit difficult to obtain, so you may want to get this ball rolling.

    Let us know how things are going for both of you. Best of luck to you and your hubby.
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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