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Thread: Coronavirus and GPA

  1. #131
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    Default Re: Coronavirus and GPA

    I had to go to the ER this past Sunday evening. I had fallen off a low step stool on Friday and glanced off a drain pipe on the way down. I think I bruised the ribs on my left side. Saturday and most of Sunday, I controlled the pain pretty well with tylenol. However, Sunday evening the pain ratcheted up as did my BP and pulse. I was also having difficulty breathing. I called 911 and was transported to OSU Medical Center.

    The EMTs were both wearing masks and gloves. The inside of the ambulance was spotless. Upon arrival at OSU, I was immediately taken to an examining room in the ER. It had been sanitized since its last use. I never saw anyoneís full face.

    I was given Zofran (for nausea) and dilaudid (for pain). I had several blood tests, a chest x-ray, and a CT scan. Fortunately, the imaging showed no injury from the fall, but the scan showed some anomalies in my kidneys (cystic foci). I have stage 3 kidney disease, but this is a new wrinkle. I had a good follow-up with my PCP on Tuesday, and he has referred me to a nephrologist.

    From the time the EMTs arrived at my home until I returned was about four hours. I felt safe and was glad to see all COVID-19 protocols followed.

    I hope all this is in the rear view mirror so we can go to the beach in a couple weeks.
    Pete
    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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  3. #132
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    Default Re: Coronavirus and GPA

    Alysia: I hope from your last post that the RTX is doing its job. It is understandable that the instability of this world is making you anxious, but if I could give you the slightest bit of advice, it would be to focus your attentions on the micro (your children/parents/cats/home/faith), and spend much, much less energy on the macro (geopolitics, sensationalist media headlines). I'm sure you are thinking, "tough talk from someone who isn't in the Middle East", but we have our own madness in America these days, sadly. Anyhow, I'm finding that the less time I spend looking at the news, the better I feel. I approach the headlines these days thinking, "How on earth am I going to stop a nuclear war (or latest crazy headline) if I can't even make my bed or pick my dirty clothes off the bedroom floor and put them in the hamper." It adds perspective.

    Pete: sorry to hear about your fall. If it makes you feel any better, I googled your kidney condition (kidney cysts) and Dr. Google says they are fairly common as we age and are usually harmless (a stark contrast from the usual diagnosis of Dr. Google, which is cancer and death, and more death). I know you're kidney labs have been up & down. Have you tried going off the Bactrim for 60 days and re-test? Dropped my creatinine considerably when I did.

    Masha: I am happy to hear your labs went well. I get worked up over my labs but the thing I've discovered in my 2 years is the way I'm feeling is often the best indicator with this disease. When I "feel good", my inflammation numbers are usually very low. When I "feel like crap", they are often elevated. The big thing I think that's helped me out is 1, the home cooking, and 2, lots of exercise this summer. I feel better than I have in a long time, and these days, I don't take that for granted anymore.

    Everyone: Keep up the good fight: we will get through this!!

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  5. #133
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by richard052018 View Post
    Pete: sorry to hear about your fall. If it makes you feel any better, I googled your kidney condition (kidney cysts) and Dr. Google says they are fairly common as we age and are usually harmless (a stark contrast from the usual diagnosis of Dr. Google, which is cancer and death, and more death). I know you're kidney labs have been up & down. Have you tried going off the Bactrim for 60 days and retest?
    @richard052018

    The ER doc told me to follow up with my PCP. We discussed kidney findings. Scarring and thinning are wegs related and likely causing my elevated creatinine and depressed eGFR. Cysts run in my family (I think my Dad had them) and are likely benign. Also checked with Dr Villa Forte, and she concurs. Weíll continue to monitor via labs. Most of the time I feel good. Ribs are still a little sore, but getting better.
    Pete
    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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  7. #134
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    Default Re: Coronavirus and GPA

    They have survey on what is important to us in their research trials for a vaccine.

    https://delphimanager.liv.ac.uk/aavresponse/Delphi

    New Research Project Open:
    AAV Response Criteria Delphi


    We need patients with granulomatosis with polyangiitis (GPA, formerly called Wegener’s) or microscopic polyangiitis (MPA) to complete this survey.
    Help us develop a tool for determining the efficacy of treatments for patients with vasculitis!
    
    We are developing a research questionnaire to create better response criteria for ANCA-associated vasculitis for use in clinical studies/trials.
    What is response criteria and why does it matter?

    Response Criteria
    A system for determining whether a patient has improved or not improved after starting a new treatment.


    Response Criteria to Improve Treatment Testing
    Since vasculitis is a complicated disease, such criteria may need to involve several different measurements of various features of the disease to decide if a patient is better, worse, or the same after treatment. Developing good criteria will improve the testing of treatments for vasculitis in the future. Learn More

    Goal of the Study

    The overarching goal of this study is to develop response criteria for AAV for use in clinical trials.

    What is Involved

    • This is an online research questionnaire.
    • There will be 4 rounds of this questionnaire.
    • Your name may be linked to your response for the purpose of determining who has completed the survey but your name will not be linked to any specific responses.


    Participate in the project today!
    Your participation will help develop better criteria to improve testing of treatments for vasculitis in the future.
    Questions?
    If you have any questions or concerns,
    please contact our study team:
    Dr. Kaitlin Quinn, ACR Research Fellow and lead investigator
    [email protected].
    Kalen Young, Director of Research Affairs VPPRN
    [email protected]

    Last edited by drz; 07-10-2020 at 04:44 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  9. #135
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    Default Re: Coronavirus and GPA

    I spoke with Dr Alexandria VillaForte yesterday morning. She told me that all of the vaccines that are being considered in the US are OK for Rituximab users. She did say that if I’m to be vaccinated it should be at least a couple of weeks before an infusion.
    My next infusion is scheduled for late February. I’ll be watching the roll out of vaccines and possibly delaying my next infusion.

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  11. #136
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    Default Re: Coronavirus and GPA

    Thanks for the info! I just responded to the vaccine thread hoping for information like this. My workplace will begin vaccinating next week and I really want to get the vaccine if possible.

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  13. #137
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    Default Re: Coronavirus and GPA

    I saw a new report yesterday.
    “...However, these vaccines won’t be approved initially for use in people who are immunocompromised. This group, though, could still benefit from widespread coronavirus vaccination.“We will eventually be able to offer protection to [immunosuppressed people], either through direct vaccination or by indirectly protecting them through herd immunity,”

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  15. #138
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    Default Re: Coronavirus and GPA

    I'm in an odd situation where I live in one state (WA) and my primary doctor is in another state (ID). So, no one is really sure who's rules or who's vaccine I will use. Supposedly, I'm on the top of the list with my primary to get the vaccine, but that was before I saw on the news that the phizer vaccine wouldn't be administered to immune compromised people. Wegner's is just the beginning of my problems. I have several other diseases on top of Weg's. It will be interesting to see if/when I get a vaccine at all. I'm hoping, tho.
    Wegener's (​GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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  17. #139
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    Default Re: Coronavirus and GPA

    A little more info regarding @JohnS conversation with Dr Villa Forte. She called me at about 7:00 last night. So far, the vaccines are OK for us weggies. The trick is getting the shots timed around rtx treatments.

    I have been getting an annual dose of 1000 mg of rtx usually in September-October. I have a new wrinkle in that my insurance is not approving this treatment any longer. They will approve two 500 mg doses spaced six months apart. Iím scheduled for my next treatment in March. If I can get both COVID shots before March 1 (unlikely), Iíll be OK for rtx as scheduled. If not, Iíll have to wait six months after rtx before getting the COVID shots.

    Fortunately, my last 1000 mg dose should see me through until autumn 2021. Our plan for now is for me to get a B-cell test in February. If that looks good, Iíll postpone the March rtx and get the COVID shots at my earliest opportunity, then wait six months for the next rtx.

    BTW, Dr Villa Forte says she has 139 weggies on rtx, and sheís going to call each of us. This is but one of the reasons why I think sheís a great doctor!
    Pete
    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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  19. #140
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    Default Re: Coronavirus and GPA

    Pete,
    I have Plan F, a supplement for United Healthcare. I get 1000 mg twice a year. Are they cutting back across the board. The supplement is to pay for what plan B does not pay.

    This should make you feel good. I handed my husband my IPad to read what you wrote. When he handed it back he said, ďthat guy doesnít look old enough to be on Medicare.Ē

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