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Type: Posts; User: shankxonline

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  1. Replies
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    Re: Wegners in ears

    For me, MTX worked to get my iritis controlled for an year before things flared up again and this time kidney was involved. That made my rheumy switch from MTX -> Ruxience
  2. Re: How was my Health before coming down with GPA Vascular

    My GPA diagnosis was also accidental in Aug 2019. I was all healthy, extremely active and keeping away from meds as much as possible until one day on vacation felt a strong pain in my back which I...
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    Re: Flare up and Rituximab route questions

    Hi smileyurbs

    Yes - completed all 4 first infusions and went well. The numbers will show improvement over time I am told - but I am feeling good so far. Tapering on Prednisone every 2 weeks.
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    Re: Covid vaccins and WG

    gunnyl - curious what that B-cell level test is. My doc hasn't mentioned it (so far)
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    Re: Covid vaccins and WG

    Hi Masha - I am in a boat with my Ruxience (Rituximab biosimilar) infusions but couldn't get vaccinated before that. My Rheumy has also asked to keep isolated and keep positive mindset with no Covid...
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    Re: Biosimilar for rituximab

    Dosage #2 today. 3 hr repeat of Ruxience 800mg. Feeling tired but can't sleep. Palpitations are up - but other vitals good.
  7. Re: New Here - Possible GPA with Nasal involvement

    A Google spreadsheet was my documentation of every symptom and doc visit. It has become my journal I can update from any place and share with any doctor when needed.
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    Re: Biosimilar for rituximab

    5 days in after Ruxience infusion and so far, so good. Sugars are through the roof (expected) and need control but no side effects seen. Fingers crossed.
    Medical bills - unknown at this time. Will...
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    Re: Biosimilar for rituximab

    Took frist Ruxience infusion (800mg) today and went un-eventul during the process. Now waiting and watching... but so far, so good.

    Pre-med given: Solumedrol, Benadryl, Tylenol.
    Infusion rate: 25...
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    Re: Flare up and Rituximab route questions

    Just completed 800 mg first infusion of Ruxience. Turned out to be non-eventful (so far) and am able to walk back home. Palpitations were higher - but no reaction during the infusion process....
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    Re: Biosimilar for rituximab

    Ah - didn't know thats an option. For now - going with Ruxience for tomorrow.
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    Re: Flare up and Rituximab route questions

    Starting Ruxience from Tuesday March 2. 800mg x 4 weeks as induction treatment and TBD thereafter.

    Fingers crossed and hoping for a better result on the other side of this :)
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    Re: Biosimilar for rituximab

    Hey All - I have been recommended to take this - Ruxience - instead of Rituxan. Anyone has had experience with it to share? Any indication of dosage that you have heard/experienced?
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    Re: Flare up and Rituximab route questions

    Thank you, all for sharing your first Rituxan experience. It always very scary to go in for an "infusion" treatment...

    Finally I got my kidney biopsy done and confirmed with GPA. A result...
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    Re: Ear, Nose and Eye involvement.

    dalatingod

    My GPA journey also started with eye involvement - scleritis. Opth started with prednisolone drops to observe effect for 2 weeks - didn't change the redness and tiredness in the eyes....
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    Re: Kidney Involvement

    Super helpful gilders. Thank you!
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    Flare up and Rituximab route questions

    Hey All

    Last week I got flare up of my GPA which was quiet for 6 months. This time kidney function was down (80-> 50) in a month, all inflammatory GPA markers were up and dr are very certain that...
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    Re: Kidney Involvement

    Hi linda1226

    Thanks for sharing your experience. Last week I got flare up of my GPA which was quiet for 6 months. This time kidney function was down (80-> 50) in a month, all inflammatory GPA...
  19. Re: shankxonline - My path to identify GPA and overcome it

    8/15/2020: I switched to sub-cutaneous Methotrexate and it has done a lot of wonders in getting my sceleritis pain down to zero. also the lab numbers are looking good - no inflammatory markers seen....
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    Re: New Here - Dx question

    wegLee: From my experience so far (as a patient) there are no fixed "markers" in the tests which will help the doctor determine that its Wegeners. From the symptoms you mentioned and responses to the...
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    GPA -> Scleritis and Rituxan anyone?

    Hello All

    I did get a second opinion from UCSF vasculitis specialists here in SF and the doc confirmed from the symptoms and tests that I do have GPA. While the joint pains have gone, my right eye...
  22. Re: shankxonline - My path to identify GPA and overcome it

    Update Mar 9, 2020:

    Sorry folks - didn't get a chance to post an update for some time. Gone through many more steps and tests and docs to be now here...

    I did get a second opinion from UCSF...
  23. Re: shankxonline - My path to identify GPA and overcome it

    Thank you. Alysia. Yes, I have reached out to my Rheu and will have to switch up the treatment to Rituxan. Prednisone dosage increase helps - but I am not happy with the amount of Prednisone I am...
  24. Re: shankxonline - My path to identify GPA and overcome it

    Its at 20 right now. Was 100+ on first diagnosis.
  25. Re: shankxonline - My path to identify GPA and overcome it

    Update 12/20/19: Follow ups on blood tests were OK. Reports are getting back to normalcy - ESR and CPR numbers included. Still on Prednisone (30mg) and Methotrexate (20mg/week). Most symptoms are...
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