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Type: Posts; User: dolfinette

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    Re: Bad Smell and taste During GPA

    I think GPA is different for everyone from what I can tell. There is SO much that is unknown and so many variables! I was diagnosed one year ago based on a biopsy of a 3.8cm mass that appeared in my...
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    Re: Hi I'm Arlene and I'm new here!

    Hi MikeG!

    Yes it "should" be a good thing if the rheumatologist you go to for a 2nd opinion isn't atrocious (you can find details of how THAT visit went in my 7-13-22 post in this...
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    Re: Hi I'm Arlene and I'm new here!

    Thanks so much for your advice, Ruby! It helps knowing that others are out who have gone through this issue! I actually do light exercise every morning for about 45 minutes for as long as I can...
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    Re: Hi I'm Arlene and I'm new here!

    Thanks so much, Pete!

    I actually have looked at the VF website and there is no one in my state registered! But I have a wonderful team of doctors who I trust completely to give me the best care....
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    Re: Hi I'm Arlene and I'm new here!

    Hi everyone! I hope you are all doing well. :biggrin1: I thought I'd update my current status since I haven't posted in a while!

    So on 5/17/22 & 5/31/22 I had my Rituxan infusions and scheduled...
  6. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Hi [email protected]$ON!

    Sorry I can't answer your question since I'm still not in remission after almost a year so I'm not even sure what a flare up is LOL! It has been about 3 weeks since my 2nd Rituxan...
  7. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    I've already faxed 30 pages of tests, notes, etc. to my new doctor and have hard copies ready to bring LOL! Now it's just a matter of being patient and hoping things work out. In the meantime I get...
  8. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Wow, you have such fabulous positive energy, Marta! I'm SO happy that you've been in remission since 2019 too! I'll definitely take note of everything you mentioned and discuss it with my new...
  9. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Wow thank you Marta for all of this wonderful information!!! You've told me WAY more than my doctor!!! I do my best to stay away from germs and rarely leave my apartment except to go to doctors. ...
  10. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Thank you Christin! Your input definitely helps! :) I sure hope I get into remission soon so that I can get back to a semi-normal sleep pattern (hopefully without meds) and regain the weight I...
  11. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Thank you, John!!! I'll definitely look into that sinus rinse you and Pete mentioned! :) I'm so glad neither of you experienced the unexplained weight loss...it really throws a wrench into...
  12. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Thanks SO much for all of your input, Pete! It really helps a lot to hear someone else's experience and I'm incredibly happy that you're doing so well 11 years in! :)

    I've had some bouts of...
  13. Some questions my doctor hasn't answered (well a lot of questions LOL)

    Hi everyone! I hope you're having a wonderful weekend. :smile1:

    I'm in the process of getting another rheumatologist because my current one who I've gone to since September 2021 doesn't...
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    Re: Hair Loss.....

    That is awesome news, Ruby! I've never taken cytoxan but I suppose if the Rituxan doesn't work we'll see LOL. But it is nice to know there is hope for my hair if I can finally get into remission....
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    Re: Hi I'm Arlene and I'm new here!

    Hi Masha!

    I was just telling my husband how crazy this disease is too! I know we all have a host of symptoms and it just seems so random! I never lie down during the day but that is exactly what...
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    Re: Hair Loss.....

    Hi! Well I'm very late to this thread (newbie here!) but I can say I've lost about 1/3 of my hair and I'm on methotrexate 15mg/week and now the Rituxan infusions. When I first started taking the...
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    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...
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    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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    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. ...
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    Re: Hi I'm Arlene and I'm new here!

    Thanks Pete! :smile:

    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...
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    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...
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