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Thread: I am a new member & fairly newly diagnosed

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    Default I am a new member & fairly newly diagnosed

    I fairly newly diagnosed and have so much to ask. Not sure how or where to start, here goes & thanks.

    Fall 2020, unresolved sinus situation after surgery, inflamed cornea, then hearing loss. The Eye doctor pushed for Wegenerís labs. Diagnosed on 12/11/20, started on cyclophosphamide with Bactrim daily 3 month course, on 12/3/12 they started me on 60mg of pred. My Rheumy said he had not seen a case in 5 years, suggested I go to Mayo Clinic Ė 4.5 hours away, I did December 30. January, February I was feeling so good hearing returned. Due to advice sought an experience GPA doc at University. He pushed to get CovID vaccine, reduced my pred from 40 to 20 to get the shots. 1st shot 2/26, end cycl. 3/12, 2nd shot 3/19 Ė GPA back 3/25 worse than before lost hearing in both ears, severe headaches, could not start Rituxan until 4/9 due to covid vaccine. --- today is 5/1/21 still having symptoms, small improvements. New GPA doc says it would take 2 months for my health to improve, and I need to take antibiotics for sinus (ENT disagrees)

    My questions
    1) how soon does Rituxan work?
    2) If there is a sinus flareup do I take antibiotics to prevent full GPA from reeking havoc?
    3) Guess I am trying to get as healthy as possible and do I can to prevent recurring .

    Thanks Kathy in Tampa

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    Default Re: I am a new member & fairly newly diagnosed

    Hi Kathy
    Sorry this post got moderated by the robot that lives in this site! Nothing personal. I've approved this and moved it to it's own thread as it's more obvious that way.

    I don't have any personal experience with Rituxan but can contribute the following:

    2) If there is a sinus flareup do I take antibiotics to prevent full GPA from reeking havoc?
    If it's a GPA flareup then your physician will probably boost one or more of the GPA meds you're taking until it's taken care of. If there's a related infection then antibiotics would also be the go.

    3) Guess I am trying to get as healthy as possible and do I can to prevent recurring .
    A flareup is mostly out of our control. If you're able to get some regular exercise and eat healthy that definitely won't hurt. Ongoing it's a matter of keeping an eye on symptoms and seeing your doc if you're worried. Your doc will also be monitoring you via regular appointment and managing your medications. Over time you'll get to be an expert at monitoring yourself

    Once you're on the prescribed regimen of Rituxan with the other meds you'll probably start feeling less crap over time similar to the improvements you're noticing at the moment. I'll let others comment further on Rituxan though but I understand it works well.

    Hope that helps in some way!

    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: I am a new member & fairly newly diagnosed

    My current treatment situation is somewhat similar to yours. I'm having my first flare that will require rituximab treatments For the first time in over 11 years. I lost my hearing during the initial diagnosis and it never did return but I found the BAHA to compensate for my hearing loss.

    Assessing a flare and how you get treated it is a complete judgment call that depends upon the doctors analysis of your situation. The more experience they have in treating Wegener's granulomatosis or by its new name of GPA helps them make the best choices. It also helps as they gain experience with how your body reacts to the treatment and the attack by the GPA.

    At the beginning of my flare this month I was put on two antibiotics since it was uncertain if an infection was causing the symptoms of the flare or if the flare would increase my chances of developing a serious infection. My flare also started shortly after my second Covid 19 vaccination which could have been a contributing factor or just a unlucky coincidence since it had been smoldering for some weeks.

    Rituximab can take some time to work and during my initial diagnosis they had to switch to cytotoxin since I was unlikely to survive long enough for the rituximab to help me.As you are aware the rituximab treatment will wipe out your immune system and make you especially prone to risk of infection so you will need to be very careful after the treatment until you recover some ability to fight off an infection.Unfortunately during this time you may have difficulty even recognizing an infection if one develops so it is important to monitor your health carefully and take whatever safeguards are necessary for your treatment.

    Best wishes for a successful and quick improvement.
    Last edited by drz; 05-03-2021 at 09:55 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: I am a new member & fairly newly diagnosed

    Thanks for sharing your experience. Today 5/9/21 slowly feeling better, took a 25 minute walk twice this week. My sinuses are still clearing out daily, but pain is more manageable. Still fatigue, but improving each day. Some hearing returned in right ear, so that is more manageable too. My regular labs drawn on 4/30 showed improvement, this doctor only wants to draw PR3/ANCA every 3 months, I want it every month. He uses a portal and said I should be fine now, I wrote back that I am far from fine. This new doc is lacking is real understanding of the life altering issues with the symptoms. I see him next on May 19. The ENT said no to antibiotics and suggested using polysporin in nose to help discharge and pain. My prednisone was reduce to 30mg last week, scheduled to go to 20 on 5/11/21.

    Guess this all about ONE day at a TIME. Listening closely to my body. I have been in the house alone since being sick end of August 2020, I miss family and friends ALOT.

    Question everyone - pre-covid --- how particular do you need to be around people. No crowds, if someone is sick close to you - RUN; I guess a mask, polysporin and to keenly aware of how people are feeling around you.

    I am putting in paperwork to be a 100% remote worker before they open the office in July. I need to work for health insurance.

    Trying my best to take it one day a time as much as possible, while learning all I can on what it will really be like. I am hoping to be able to spot a flare-up as soon as possible and try to minimize the devastating effects as best as possible. This last time really frightened me on how intense and quick it was.
    THANKS everyone! Glad to be alive and looking forward to a walk in the sunshine today! Slow and steady!

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    Default Re: I am a new member & fairly newly diagnosed

    Hi Kathy,

    I had similar issues with hearing loss and sinus pain when I was diagnosed. My sinus pain was not a sinus infection it was pain associated with GPA. So if your ENT says you don't have a infection then that could most likely be the case. I have been on Rituxan from the beginning and then added Imuran to take daily. I as well started off with 60 mg of prednisone. I am actually surprised since you are still dealing with pain and issues that they have started reducing your prednisone. My rhumy has made baby steps with reducing my prednisone and four years later I am on 4mg. As far as when did I start feeling better after started Rituxan, it wasn't until after my second session of Rituxan (every six months). As far as your issues with your rhumy, if you are not happy with him I would search for another one. Your rhumy is your life line to deal with GPA and you need to feel comfortable and trust the doctor.

    Hope things get better for you.

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    Default Re: I am a new member & fairly newly diagnosed

    Kathy, I agree with what Smileyurbs said about changing rheumatologists. Check the Vasculitis site. I learned after wasting time, that I had the right to ask how much experience and how many patients they have treated with GPA.
    My blood work has always been done on a three month basis. I did not feel better for a couple of years, only because my first year was wasted with methotrexate. Once I changed doctors, was put on Rituxin, Bactrim 3X weekly, my strength started to come back. I am still up and down on prednisone, when I reduce under 10 I start to simmer.
    As far as the sinus problems- and I learned these tricks on this site. I got a machine called SinuPulse from Amazon. Use it with SinuAir powder and Alakalol, a very easy, thorough way to irrigate, nothing like those little teapots. Also, I use Flonase, takes a few days to start taking effect. Another thing I take daily is Mucinex, generic is fine.
    You asked about masks and going out before COVID. My GPA would start with sinus, cold then pneumonia. I also had severe leg pain. I realized if I started by eliminating colds that would help eliminate attacks (Bactrim plays a big role in this). I avoid groups in small spaces. You never know who has the flu, cold, etc. If I wanted to be with friends, neighbors I never hesitated in explaining my situation and asking if they felt sick. I am much older than you, 71, but I did have to eliminate book club and art groups. I continued to shop, eat out and be with four or five safe people. Covid put an end to everything.
    Please keep in mind our Rituxin puts us at high risk for infection. Our B cells donít work like they do in healthy people, in us they are the enemy, so Rituxin knocks them out. In order to fight COVID we need B cells. I know some people donít need Rituxin, I do, have tried everything else. I am going to ask for an antibody test. One of the guys on this site did, and he has no antibodies. Your doctor should have explained all of this to you.
    I have heard wonderful things about Cleveland Clinic. I went to Duke to get straightened out. Now I have a local doctor who has had many GPA patients.
    It has got to be hard, living alone. I am fortunate enough to have a wonderful patient husband and two adorable non shedding dogs. Good you can take walks. Instacart was a lifesaver. We are continuing it even after COVID-19.
    Donít hesitate to reach out to us for help. This is a wonderful site. No nonsense and sometimes humor.
    It took me a year after diagnosis to find this site, but once I did I feel like I had friends who understood me.
    Please donít think this disease is the end. It is not. We have taken vacations, tours, stayed in hotels and had fun. The worst thing is stress. I avoid the crazy news and will not discuss politics. You will see the light at the end of the tunnel.
    Masha

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    Default Re: I am a new member & fairly newly diagnosed

    i have got good care from doctors who who not regarded as experts in treating Wegener's Granulomatosis or autoimmune disorders but they consulted with the world experts about my my care and how to best treat me. The main thing is are you getting the appropriate care and how much trust you have in treatment team. Learning to live with a lot of uncertainty is probably the most difficult part of learning how to manage your Wegener's Granulomatosis since many things are unknown and unpredictable, but then so is life in general. Learn to consult often with your care team, be vigilant but keep an optimistic outlook and focus on enjoying the best life you can at any moment. Life will go on but it might be very different for you.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Cool Re: I am a new member & fairly newly diagnosed -- THANKS

    Hello All,
    Thanks so much for all the wonderful guidance, knowledge and experience. I am starting to feel a little bit better. I had my 2nd infusion of Rituxan on 5/28/21. The week before I gained a little more hearing in my left ear. Clearing my sinuses 3 x a day with the nettie pot is still happening, the pain is less severe and there is less discharge. Also, the doc reduced my prednisone to 15 on 5/29/21. I would love to find a more experienced ENT with GPA, but for now, I am doing research, bringing your recommendations and from what I gather, as I learn how my GPA presents itself along with trial and error, I will gain some vitality and manageability. I hope the fatigue will stop. It appears to be every other day lately. I have off of work this week, will not have to go back until 6/7/21. I have 5 medical appointments, and hope that all go well.
    Sleep is a little bit better. Adapting to my new normal is challenging at times. In April & most of May, I was afraid to do more when I had energy. I felt so sick. Now I am trying to find a rhythm to my energy and listening to my body without the fear. Does that make sense?
    I do not know if this appropriate in this forum, but I would love to talk to someone. My cell phone is 813-288-2688.
    I really appreciate the feedback and support. My attitude and outlook is brighter because of it.
    All the best to all of you
    Kathy in Tampa

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    Default Re: I am a new member & fairly newly diagnosed -- THANKS

    Quote Originally Posted by KathyTPA View Post
    Hello All,
    Thanks so much for all the wonderful guidance, knowledge and experience. I am starting to feel a little bit better. I had my 2nd infusion of Rituxan on 5/28/21. The week before I gained a little more hearing in my left ear. Clearing my sinuses 3 x a day with the nettie pot is still happening, the pain is less severe and there is less discharge. Also, the doc reduced my prednisone to 15 on 5/29/21. I would love to find a more experienced ENT with GPA, but for now, I am doing research, bringing your recommendations and from what I gather, as I learn how my GPA presents itself along with trial and error, I will gain some vitality and manageability. I hope the fatigue will stop. It appears to be every other day lately. I have off of work this week, will not have to go back until 6/7/21. I have 5 medical appointments, and hope that all go well.
    Sleep is a little bit better. Adapting to my new normal is challenging at times. In April & most of May, I was afraid to do more when I had energy. I felt so sick. Now I am trying to find a rhythm to my energy and listening to my body without the fear. Does that make sense?
    I do not know if this appropriate in this forum, but I would love to talk to someone. My cell phone is 813-288-2688.
    I really appreciate the feedback and support. My attitude and outlook is brighter because of it.
    All the best to all of you
    Kathy in Tampa
    Hello Kathy. I have not been diagnosed with GPA; but Iím worried that I have it. I live really close to Tampa. Iíd love to call you tomorrow and learn more about GPA, if thatís okay.
    April

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    Default Re: I am a new member & fairly newly diagnosed

    @KathyTPA

    You might want to investigate this a bit: https://www.bizjournals.com/tampabay...c-network.html

    You may be able to have your local doc consult with a Mayo GPA specialist.
    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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