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Thread: Hello from new member

  1. #1
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    Default Hello from new member

    Hi all,

    I've recently been diagnosed with GPA. I'm still in an active state, recently completed 2 rounds of infusion therapy with Truxima. Still trying to learn about GPA and how to deal with it the best I can. Like many others have posted, my energy level gets used up much more quickly than I'd like. I am also dealing with ongoing headaches, head congestion and ear pain. Prior to the diagnosis I had severe ear infections and pain in both ears and sudden bilateral severe/profound hearing loss. While some of my hearing has returned, it's still in flux so I need to wait for it to stabilize before getting hearing aids. I'm in southeast New England in the US.

    Thanks in advance foray information and feedback!
    Razie

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  3. #2
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    Default Re: Hello from new member

    Hi @Razie

    Welcome to the club no one wants to join. You may be one of the first here to be treated with truxima. Many of us are treated with Rituximab for which truxima is a biosimilar. Weíll be curious about your experience with the new drug.

    I hope your hearing comes back. Hearing aids are a mixed blessing.
    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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    Default Re: Hello from new member

    Thanks Pete, it's nice to know there's company in a place no one wants to be.

    I've had 2 infusion treatments with the Truxima first one lasted about 6 hours, the second lasted about 5 hours (which should have been less time but I kept using my arm and slowing the drip). Had oral Tylenol and Benadryl right before the infusion. The day after each treatment I felt GREAT! The day after that about half as good and two days after back to the current crappy normal. My crappy normal (at that time) included debilitating headaches, head congestion and ear pain (I would wake up and it could take 1-2 hours before I could even get out of bed), balance issues, and low energy levels. Not sure if all this was due to the GPA or prednisone or other meds. I also have a dry, non-productive cough that was at a 30-45 second frequency - so not much sleep for weeks. The thinking is that the GPA is responsible for nodules in my lung that are pressing on nerve bundles that result in the cough. That, with additional meds, seems to be getting better. At least I can usually sleep through the night now.

    So, in addition to the Trumixa, I'm also taking prednisone, lorazepam, benzonatate, amitriptyline , omeprazole, a couple of nasal sprays, hydrocodone solution, and either Tylenol or ibuprofen as needed. It's been about 4 weeks since my last Truxima infusion, and many of the symptoms seem to be lessoning in intensity or frequency.

    Not sure if this is helpful information for folks but I'm happy to share what I can.

    I was approved for Evushield, but couldn't find enough information from folks that have received it to get it myself. I've also been approved for avacopan/Tavneos, but also can't find much information from folks who have received it.

    Razie

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    Default Re: Hello from new member

    @Razie

    Evusheld should be a nonevent. I had it March with no side effects. Iím scheduled for another dose next week, assuming Iím past Covid by then. I probably got the variant that Evusheld doesnít cover. At any rate, I had a mild case (including a rebound thanks to paxlovid), but itís been the mother of all head colds. Probably would have been worse without Evusheld and vaccine.

    You should be able to take Evusheld and truxima together. My doc gives rituximab and Evusheld in the same visit.

    Good luck!!
    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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  8. #5
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    Default Re: Hello from new member

    I have been treated mainly with Truxima, for whatever reason Rituximab seemed to trigger allergic reactions from me quicker than the Truxima. It did the job, hitting the 2 year mark of being in remission.

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    Default Re: Hello from new member

    Hi Razie,

    I'm really sorry you've been sick. Your experience sounds very familiar to me. I especially sympathize with the pain you describe. However, I feel very sure you will get better and reach your prior normal state of wellness, what you were accustomed to before you began to get sick. I say that because that has been my own experience and seems to be the general experience of all the people whose stories I've read on this website. So I hope you will take heart.

    Having said that, it can take a long time to get there. Many of us on this website have had this diagnosis for many years. I've had it for 16 years, so that is to say it has become a fact of life for me, and I think that's generally the case with this condition, as with most chronic diseases. But my life is great and I think yours will be too. I hope this doesn't worry you; I'm trying to convey that with patience, you will be your old self again, I believe. In particular, I think that pain you describe will resolve. Mine did. I still get it, primarily for a couple of days after a rituximab infusion, but less and less often and it is less and less intense when it occurs. Most of the time, I am completely pain free.

    I could go on, and I usually do, but I'll try to cut this short. But a couple of final points. You're taking a lot of medications right now, as we all do when we start out, and all of them have the potential to cause side effects, so many of the symptoms you are experiencing might be at least partially the side effects of medications. Those will gradually subside as your medication list gets shorter. It took me a long time to figure out what was an effect of the disease and what was a drug side effect.

    I'm still learning and I wish you the very best of success in your disease management and feel sure you will reach a point where WG is something you manage, not something that manages you. Good luck and welcome to this weird club! Sorry you had to go looking, but glad you found it. It has been a huge help to me!

    Ruby

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  12. #7
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    Default Re: Hello from new member

    @Ruby, thank you for this information. It is really helpful and helps de-stress a bit

    Razie

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