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Thread: Hi I'm Arlene and I'm new here!

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    Smile Hi I'm Arlene and I'm new here!

    Hello all! I'm Arlene and I just joined up so I wanted to say hi and thank you for letting me part of this community!

    My story starts in April 2021. It seems the 2nd Moderna vaccine triggered not only the itchy, painful 7-day arm rash that the 1st dose provided but a few other problems including frozen shoulder and a 3.8cm mass in my left lung. I've never smoked but have allergies so the only way my pulmonologist found the mass was by chance. I had a CT of my lung in June 2020 because of a cough and all was clear but my follow-up July 2021 CT showed the mass. I should note that my main issues were pain, insomnia, sinus problems/nosebleeds, extreme fatigue and unexplained weight loss (about 8% of my body weight).

    My neurologist who I was sent to in July for the frozen shoulder problem put me on gabapentin and after no less than 45 tubes of blood for a host of labwork, more CTs/MRIs, and a horrible test called an EMG test she suspected I had GPA and referred me to a rheumatologist (2 month wait). I finally got an appointment with him in September and he went over all my symptoms and redid some labs. I developed secondary Sjogren's syndrome and secondary inflammatory arthritis (I already had Raynaud's, thyroid issues, etc.) so those were new developments. And though I never tested positive for ANCA he said "tissue is the issue", meaning I had to get a lung biopsy of the mass for the most accurate diagnosis to see if I in fact had what he too suspected was GPA.

    In October I had the mass removed (OUCH!) and it was confirmed I had limited/non-life-threatening GPA. So my first plan he had me on was the methotrexate 10mg + prednisone 5mg. That 2 month trial didn't work out well for me as I still had all the pain/symptoms plus the new horrible ones that the prednisone gave me! He increased my methotrexate to 15 mg and changed prednisone to methylprednisolone 4mg. He also increased my lorazepam to 1-2mg each night because my sleep was awful and increased my gabapentin 300mg to 6 times per day. Again that did not work out.

    So finally here I am on 5/31/22 and in a few hours I am having my 2nd Rituxan infusion! Long story short, I'm still not in remission after 8+ months and am hoping the Rituxan finally does it! I was told by the nurses 2 weeks ago at my 1st infusion that it takes up to 12 weeks to start having any positive effects from it so while I'm doing my best to be positive that is a long time! I've been miserable for over one year now and all I can say is how grateful I am to have found this forum/group! It's hard sometimes keeping a positive, strong appearance (mostly for my family's sake) so it is nice that there is a place here where others understand all the stuff we go through!
    Anyway thanks for listening and, again, thanks for having me!

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  3. #2
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    Default Re: Hi I'm Arlene and I'm new here!

    Hi Arlene!

    Welcome to the forum. Iím sad that youíve had such a time getting diagnosed, but GPA is often difficult to diagnose because so few doctors think to look for it. I hope the rituximab gets you to remission quickly.

    Where are you located? Once we know that, we can offer suggestions about knowledgeable GPA doctors who can treat you more effectively.

    Keep us informed about your progress!
    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: Hi I'm Arlene and I'm new here!

    Thanks Pete!

    I'm located in the greater Seattle area (Washington) and, as a matter of fact, my pulmonologist is having me go to another rheumatologist to see if she is a better fit to help me!

    I'll try to post updates if anything changes. Thanks again for the warm welcome and kind thoughts!

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    Default Re: Hi I'm Arlene and I'm new here!

    Hi Arlene,

    Welcome. I'm pretty new here too, but I've had Wegener's for several years and I've been through a lot of ups and downs. I'm sorry you have been through so much, but I believe you will find the Rituxan makes a world of difference. In fact, I think you will start to feel better sooner than 12 weeks, at least that has been my experience. But I think we all know it can be a tough adjustment early on, so take heart. I was really frightened (and a little angry, I think) at first, and it seems to me from reading other posts on this forum that this is fairly common. So if you're feeling some anxiety about this new experience, I think that will improve as well, along with improvement in your physical symptoms.

    I have been taking Rituxan every six months recently and doing very well on it. Now that I've been on this maintenance regimen, I only have to take one infusion every six months, which is easier than having two or four infusions at a time. Every case is different, so your doctor may recommend a different protocol. I wish you the very best and feel confident you will soon start to see that you can feel good again and have a good life.

    Very best regards,
    Ruby

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    Smile Re: Hi I'm Arlene and I'm new here!

    Thanks, Ruby!

    My infusion really knocked me out yesterday so I didn't do much but rest or I'd have thanked you earlier for your kind post! I'm hoping these infusions finally put me in remission. Actually, if they don't, I have no idea what happens! Well one day at a time!

    Have a great day!

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    Default Re: Hi I'm Arlene and I'm new here!

    Hi Arlene.
    Welcome here.
    One day at a time is always a good idea

    I hope you 'll soon feel better!
    Living with WG/GPA since june 2010...

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    Default Re: Hi I'm Arlene and I'm new here!

    Thanks so much, I appreciate it!!! My face turned bright red yesterday and I feel like I'm on fire but today is slightly better--I'll take even 1% better! LOL

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    Default Re: Hi I'm Arlene and I'm new here!

    Quote Originally Posted by dolfinette View Post
    Hello all! I'm Arlene and I just joined up so I wanted to say hi and thank you for letting me part of this community!

    My story starts in April 2021. It seems the 2nd Moderna vaccine triggered not only the itchy, painful 7-day arm rash that the 1st dose provided but a few other problems including frozen shoulder and a 3.8cm mass in my left lung. I've never smoked but have allergies so the only way my pulmonologist found the mass was by chance. I had a CT of my lung in June 2020 because of a cough and all was clear but my follow-up July 2021 CT showed the mass. I should note that my main issues were pain, insomnia, sinus problems/nosebleeds, extreme fatigue and unexplained weight loss (about 8% of my body weight).

    My neurologist who I was sent to in July for the frozen shoulder problem put me on gabapentin and after no less than 45 tubes of blood for a host of labwork, more CTs/MRIs, and a horrible test called an EMG test she suspected I had GPA and referred me to a rheumatologist (2 month wait). I finally got an appointment with him in September and he went over all my symptoms and redid some labs. I developed secondary Sjogren's syndrome and secondary inflammatory arthritis (I already had Raynaud's, thyroid issues, etc.) so those were new developments. And though I never tested positive for ANCA he said "tissue is the issue", meaning I had to get a lung biopsy of the mass for the most accurate diagnosis to see if I in fact had what he too suspected was GPA.

    In October I had the mass removed (OUCH!) and it was confirmed I had limited/non-life-threatening GPA. So my first plan he had me on was the methotrexate 10mg + prednisone 5mg. That 2 month trial didn't work out well for me as I still had all the pain/symptoms plus the new horrible ones that the prednisone gave me! He increased my methotrexate to 15 mg and changed prednisone to methylprednisolone 4mg. He also increased my lorazepam to 1-2mg each night because my sleep was awful and increased my gabapentin 300mg to 6 times per day. Again that did not work out.

    So finally here I am on 5/31/22 and in a few hours I am having my 2nd Rituxan infusion! Long story short, I'm still not in remission after 8+ months and am hoping the Rituxan finally does it! I was told by the nurses 2 weeks ago at my 1st infusion that it takes up to 12 weeks to start having any positive effects from it so while I'm doing my best to be positive that is a long time! I've been miserable for over one year now and all I can say is how grateful I am to have found this forum/group! It's hard sometimes keeping a positive, strong appearance (mostly for my family's sake) so it is nice that there is a place here where others understand all the stuff we go through!
    Anyway thanks for listening and, again, thanks for having me!
    I know many of us with autoimmune disorders had flares of our autoimmune disorders after getting the vaccinations for Covid virus but in your case it seems like it might have been the cause of a new one which is probably pretty unusual. Having a flare though of other auto immune issues or developing a new one is not too unusual though since many of us have more than one autoimmune disorder. RTX usually helps with most auto immune disorders although it can some times take a while. High dosage of pred meds are often needed till then even though we al hate the side effects from lots of prednisone meds.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Hi I'm Arlene and I'm new here!

    Yes it is odd but all signs point to the vaccine triggering GPA in me. I had no lung mass prior nor did I have any of the symptoms. I had many autoimmune disorders prior to it. Well, that's how life rolls sometimes! So far the infusions have given me headaches, nausea, flushing, and feeling like I'm on fire...fun stuff. I know it takes time so what's another few months of pain--it has already been over one year with minimal relief! Thanks for your post drz!

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    Default Re: Hi I'm Arlene and I'm new here!

    Hi Arlene and Ruby,
    This is just the craziest disease. It seems we all have different symptoms and react to medication differently. My doctors think I walked around with GPA for years, too many close calls with pneumonia. I wasnít diagnosed until I was 67, by an ENT. First rheumatologist didnít have a clue. Thanks to this site I knew to ask how many patients he treated with this- none! For me Rituxin 2x a year has been my friend. I also take Bactrim and the evil prednisone. I am reducing prednisone because it has caused me to have T2 diabetes, causing me to create a very low carb lifestyle. In addition to sinus problems I have had many dental issues, spent yesterday in the dentistís chair.
    I am 72, my wonderful supportive husband is 79. We live in our own home in a 55+ community. We have 2 dogs, one 8, the other a crazy puppy. The 8 year oldís brother died this past January. I was forlorn. He was a great little friend when I was initially so sick. Best dog ever.
    Since my problems originate in my sinuses, and Rituxin knocks out your B cells which you need to fight Covid, the last few years have caused extreme isolation. My doctors gave me my odds if I got Covid and we saw a few neighbors, 60ís and 70ís pass from it. The vaccines gave me no antibodies, but fortunately I was able to get Evusheld.
    This journey we are all on, requires us to avoid stress and stay as positive as possible.

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