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Thread: Me too - New GPA diagnosis. High Anca titer

  1. #31
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    @mike - glad I could help! 😊
    @ Michelle - do you find lahey and MGH generally agree on treatment plans? I found out at my first infusion that MGH nephrology does "2nd round" 4 months after first and that MGH rheum does "2nd round" 6 months after first. Gonna discuss that at appt tomorrow. Find out pros and cons.
    What do most dr's recommend for "2nd Round" of infusions? Then I heard there are the 4 infusions one week apart plans...
    I want to be somewhat aggressive in knocking this disease down....

  2. #32
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    Today's appts:

    I had Excellent appts today. I'm feeling happy, peaceful and like I am in very safe hands.

    Mass Eye & Ear (MEEI) Appt.:
    ~ Otologist: Ear drum, canals, ear inflammation, fluid and hearing are all much improved. There is NO organ damage to my ears. I'm following up with them/plus hearing test in 3 months.

    Mass Genl (MGH) Rheumatology appt.:
    ~ Rheum dr said Rituxan is VERY safe AND effective in knocking down GPA disease's activity. Said I shd live a long relatively normal life with this chronic condition. GPA would not be my demise. I asked if I had another 50 years and he asked how old my grandparents were when they passed 👍 (Nana was 99!)

    But he is ALSO erring on safe side by having me seen by mass eye & ear (MEEI) Eye dr to assess eyes (some degradation in sight noticed when I went back to work this week and couldn't see as well as I could when there last -a month ago. And sending me to pulmonary dr to assess status of my lung granulomas/lung function, And to urology (weird but true) to assess "fatty mass" found on my kidney during CT scan. ~ Just to determine for sure that it's harmless (note: Kidneys are fully functioning - they do not have any GPA disease effects) And Rheum Dr wants to see me back again in 2-3 weeks to plan subsequent Ritux (either 4 mos or 6 mos from next infusion on Aug 25) and see how I'm doing on high meds ~ and follow up on lungs - I was at 94% O2 today and still have cough with some mucous.

    So, I have many more appointments coming up than I anticipated but these appts are more to have baseline readings done and be cautionary than anything else. (I told them I want to be aggressive in my treatment and safety. )

    I need to wash hands, and avoid very sick people if possible (esp these next 6 months while I have both Ritux suppression and high prednisone meds- they anticipate I will taper prednisone to a low dose after that.) I also need to report any illness/ symptoms/ or fever of 100.4 or more. Makes me feel a bit like a prima-donna or diva. 😏 But I really like how they are handling treatment and medical care.

    All in all I feel like I'm being well cared for 😊👍🏼. I saw Dr Keller and Dr Choi at MGH. And Dr. deVenecia at MEEI. And last week at my MGH infusion appt (nephrology ctr) I saw Dr. Cortazar. All excellent dr's.

    Edit: forgot to add they are keeping me at 60 mg pred til my next rheum appt in 2-3 weeks. Their scale said I lost 6 lbs since August 1. Mine is down 3-4 lbs. I'm trying to eat cleaner (less processed food) but am still getting munchies and eating in the middle of most nights even! I have some facial, belly and ankle water retention. I'm about 65-70 lbs over weight but they said they base pred on ideal weight. Not actual weight. Anyone else on 60 mgs of pred longer than a month? it'll be 5-6 weeks of 60 before they reevaluate level. My mood is pretty good despite the pred.
    Also I have not had any joint pain since my hip pain that day. 👍
    Last edited by Gab122; 08-18-2016 at 08:53 PM. Reason: More info

  3. #33
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    Quote Originally Posted by Gab122 View Post
    Today's appts: I had Excellent appts today. I'm feeling happy, peaceful and like I am in very safe hands.
    That's very, very good to hear!! Glad you are on a good path and feel like you have a good team on your side. I believe that is the most important part of your health--comfortable with your health care providers.

    Quote Originally Posted by Gab122 View Post
    Anyone else on 60 mgs of pred longer than a month? it'll be 5-6 weeks of 60 before they reevaluate level. My mood is pretty good despite the pred.
    Also I have not had any joint pain since my hip pain that day. 
    I was on a HUGE dose of pred back in 2013. 80mg for 6 weeks, 70, for 6 weeks...basically a 6-8 month journey to 10mg. That whole thing sucked, but in hindsight, it probably saved my lungs from further damage. During that awful time, I gained about 70 pounds. While on pred, I have ZERO self control over food intake. I feel like a starved wild animal when on any dose of pred, and those high doses were murder. I've managed to take off about 60 again, but that has been super slow going.

    I wish you well. Eating healthy is really cool, and I am glad that you've been able to control the beast we love to hate--Prednisone!

    Have a marvelous day!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  4. #34
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    Thx Mike! Don't credit me with too much self-control tho! 😏 I'm somewhat wondering if the weight loss is due more to GPA disease activity or sometimes my stomach feels "off" (meds?) and honestly if I fill up too much I have less room for breathing. But almost every night lately, I wake up and eat around 2-3 am. ??? I am trying to make some good choices but I'm not overcome with munchies constantly for some reason (thank you God) I almost think the munchies were stronger while on the 10 day pred taper prior to my dx of GPA. We'll see what happens. 😊

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    Gabrielle - Sounds like you are having all your bases covered! I was also on high doses of Prednisone for a while starting at 80mg after the 1000 mg IV doses I had while in hospital

    please be sure to ask your RA to send you to an eye doc at MEEI that is familiar with GPA - as I mentioned I thought I was seeing someone that was well versed in GPA but he was not.

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    Wow you guys have been on super high pred!

    Middlesista, My MEEI otologist dr recommended an MEEI opthamologist (dr. Matthew Gardiner) - in fact my Oto dr goes to dr gardiner for eye exams.

    I asked my RA to refer me to Gardiner or better - someone with GPA experience - looks like she picked Gardiner. Do you have feedback on him? Can you tell me who wasn't a knowledgable GPA opthamologist at MEEI?

    Someone scheduled me with Dr. Gardiner for the end of Jan! That's longer than I want to wait so I'm going to call tomorrow and see who's available earlier.

    If you have a good GPA opthamologist dr in mind please share the name. 😊

    Thx
    Gab
    Last edited by Gab122; 08-19-2016 at 10:56 PM. Reason: Typo

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    Hi middlesista, I found out that most autoimmune patients see MEEI eye dr's that specialize in immunology - there are 4 of these dr's. Dr. Dana, Dr. Papaliodis, Dr. Sobrin and Dr Young - any info you can share is appreciated.
    Thx Gab

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    Hi Gab - check messages. ☺️

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    Hi! I am a newly diagnosed "Weggie" and am still in the early stages of investigation. I had my first appointment with 'my' Rheumatologist a couple of weeks ago and am now anxiously awaiting the results of blood tests which will determine my particular course of therapy. I was happy to stumble upon this forum as I no longer feel alone.


    Sent from my iPad using Tapatalk

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    Quote Originally Posted by Middlesista View Post
    Hi Gab - check messages.
    Hi Middlesista,
    I didn't see any messages on the mobile version of the website so I downloaded the tapatalk app and only see my welcome to the forum message from Andrew. Can you tell me where to look for private messages?
    Thx!
    Gab


    Sent from my iPhone using Tapatalk
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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