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Type: Posts; User: Middlesista

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    Re: It’s always something…

    My CAnca is neg and all my labs point to no active disease. I am on Rituxin, low dose prednisone and I have been dealing with this disease since 2015 with many ups and downs - sinus, eye, nose, lung,...
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    Re: It’s always something…

    Well ANCA came back negative - points to GPA not being active. The biopsy is Nov 30th. Took care of a patient today (I’m a nurse and still working) and he has nodules that come and go and he does...
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    Re: It’s always somethingmore

    Thanks drz - waiting for repeat Anca to come back. If that is positive it points more towards another GPA nodule, if it is negative points more towards malignancy but need the biopsy to be sure. This...
  4. Re: Y’all settle in and I’ll make this quick… hopefully

    Pete and DRZ - so nice to “see you” both - still sharing your wisdom and kindness. Ashley - thank you for sharing your story and so glad that you are in good hands. This fool disease is shifty and...
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    It’s always something…

    Hello again - I first started this journey in November 2015 when I was diagnosed with GPA. I found this site and learned so much and was comforted by the stories and the
    wonderful people I came...
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    Re: Coronavirus and GPA

    Hi folks- From the reading I have been doing have not come across anyone who has received the Covid vaccine and on Rituxin even with proper timing to have a positive result in the testing for the...
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    Re: Covid vaccins and WG

    Asked about having antibodies drawn to determine if vaccine offered some immunity and was told per an ID doc that at this point “we can not check vaccine ab titers to see if you have protection. If...
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    Re: Covid vaccins and WG

    I received the Pfizer vaccine last week - just about 6 months after my Rituxin and will get the second shot in February. I need to reschedule my Rituxin for 3 weeks after the second vaccine so late...
  9. Thread: Prolia

    by Middlesista
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    Re: Prolia

    Well - from my reading it is not a good drug for folks that r immune compromised. So the plan is to have another bone density test and take it from there.
  10. Thread: Prolia

    by Middlesista
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    Re: Prolia

    Thanks for your reply!
  11. Thread: Prolia

    by Middlesista
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    Prolia

    As many of us with GPA I have had multiple doses of steroids and recently developed a compression fracture of a vertebra. I agreed to Fosomax although I had avoided this drug. I ended up with...
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    Re: Coronavirus and GPA

    Nurses with GPA who are immune suppressed - are any of you working in acute care?
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    Re: Bubble Echo

    Thanks for the info Pete. 😊
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    Re: Bubble Echo

    Well now I can answer my own question. Had this procedure done - for my situation due to low oxygen sats the pulmonologist was looking for a shunting of blood. They insert IV and the nurse...
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    Bubble Echo

    Has anyone had a echo bubble test?
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    Re: Diagnosed December 2018

    Hello Ken - Sounds like you are on the right road - being correctly diagnosed and starting treatment is vital. A lot of good advice here. I also keep a journal of my symptoms and find it helpful to...
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    Re: Newly dx 11/28/18 and scared!

    Hi Matt - the folks here and on the various disease related face book pages have been wonderfully helpful and supportive as you have learned. Was there a reason your medical team went with cytoxan...
  18. Re: Rituxin - C19 and C20 and length of B cell suppresion

    I have read where folks say the manufacturer has some sort of program to help folks with payment of the Rituxin

    Well I certainly hope you don’t flare! At one point my insurance wanted me to...
  19. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Thanks Woz. I thought it was odd that when my PR 3 went up the second time the ANCA was negative - did that happen to you or was your ANCA positive also? Have you ever had to use Rituxin?
  20. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Thanks Pete- hope all is well with you and yours.
  21. Re: Rituxin - C19 and C20 and length of B cell suppresion

    As I mentioned earlier in this thread I was of the “less is best” mind set and did not want the every 6 month infusion so we tried MTX however last year ended up with new lung lesion and had to go...
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    Re: Rituxin Question

    Thank you Alysia - your insight is very helpful. You have also dealt with so much - both physically and emotionally. You are truly a very kind and giving person with all the help and support you send...
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    Rituxin Question

    Just a bit of background - Completed my 4th infusion on July 9th, this was my second round of Rituxnin the first being in 2015 which “quieted” things down for over 2 years. About month and a half...
  24. Re: Rituxin - C19 and C20 and length of B cell suppresion

    thanks Loisann - will be having C19/20 done next month.
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    Re: Rituxin and lung toxicity

    Thanks Alysia - after week and half in hospital going home today!
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