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Type: Posts; User: LisaT

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  1. Re: Starting treatment today and having a bit of anxiety about it

    Sorry I haven't been around... I will write a proper answer later as I have to get my kids off to school. Susan, you sound super organized and on top of things. I still don't have a proper file with...
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    Telecommuting/part-time ideas

    Hi, I just received this article from The Mighty listing companies who hire telecommuters part-time or by project. We talk a lot about disability applications, having to give up jobs due to symptoms...
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    Thanks and hbd!

    Thank you for all the bday wishes! Wishing a very happy birthday to my fellow Libra Weggie, @ruthiebeez. I hope your birthday finds you well....
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    Thank you, Alysia! That is so sweet of you. It's...

    Thank you, Alysia! That is so sweet of you. It's tomorrow in my time zone but must already be the 7th where you are. So you were the first person to wish me a happy birthday! I love you too. :wub:...
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    Maybe you could use a vaporizer? It turns it to...

    Maybe you could use a vaporizer? It turns it to steam with no combustion. Much easier on the lungs. I have a small vape 'pen' for this purpose. I usually smoke straight cbd flower but you can also...
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    New trial for non-severe relapsing GPA

    I hope this is the correct place to post this. It was in the VF newsletter and sounds promising. They're enrolling people who have non-life-threatening relapses for a trial of abatacept. In the first...
  7. Thread: Anemia

    by LisaT
    Replies
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    That's great. Amazing clinic. Let us know what he...

    That's great. Amazing clinic. Let us know what he thinks. Good luck!
  8. Susan, I'm glad you've found a good doctor and...

    Susan, I'm glad you've found a good doctor and are in good hands. Accepting and coming to terms with your illness will take some time. It will be easier to accept when your symptoms are under control...
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    I take, C, D, oregano oil.. I also use thieves'...

    I take, C, D, oregano oil.. I also use thieves' oil on my feet, clothes, skin, and essential oils (a breathe easy mixture) sometimes. Make bone broth (or buy from a good butcher), drink lots of it...
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    I've never felt that way from prednisone and...

    I've never felt that way from prednisone and usually drive while on it. But it sounds safer if you don't drive for the time being. I haven't felt well after my rituximab infusion and have avoided...
  11. Thread: Anemia

    by LisaT
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    1,705

    I often have low hemoglobin and my rheumatologist...

    I often have low hemoglobin and my rheumatologist doesn't seem that concerned. He has referred to it as the anemia of chronic disease. But i don't think it's gone as low as yours. I don't have...
  12. Thread: Pred Uglies

    by LisaT
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    This thread is really helpful. Thanks Marta, for...

    This thread is really helpful. Thanks Marta, for starting it and for all the detailed info on weaning off of prednisone. I want to try. I'm on 10 mg now and just had my second RTX five days ago. i'll...
  13. Thread: Newbie :)

    by LisaT
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    I was diagnosed in 2013 but my nose and throat...

    I was diagnosed in 2013 but my nose and throat problems started many years before. In 2010 I was diagnosed with rheumatoid arthritis and it's only been since I got subglottic stenosis in 2013 that...
  14. Thread: Newbie :)

    by LisaT
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    Hi Jacqueline, I'm afraid I don't know the answer...

    Hi Jacqueline, I'm afraid I don't know the answer to your question, but just wanted to ask if you live in Toronto and whether your ENT is at Mount Sinai... I'm in BC but I visit Toronto quite a bit...
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    I think those who have wegeners and are still...

    I think those who have wegeners and are still able to work are in remission, or the lucky ones whose fatigue and other symptoms are not debilitating. We're all different, but one thing that seems...
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    I think it will take a long time to really...

    I think it will take a long time to really accept. I think we go through a grieving process after receiving the news. I'm still sometimes in denial. I'll have a good day and think, nah, I'm okay,...
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    We worked it out by my mom having a chat with...

    We worked it out by my mom having a chat with him. She is staying in town a few days longer to help, and will care for my son (he's 10 years old but still very attached) during the day and his dad...
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    Exposure to illness after infusion

    Now I'm in a real pickle. My son is sick and supposed to come back to my house tomorrow. His evil soulless father is refusing to keep him (knowing the risk to me and that I can't be exposed). I don't...
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    Susan, I'm sorry you're joining the Wegeners...

    Susan, I'm sorry you're joining the Wegeners 'club', as Pete called it, but am vey happy that you at least have some answers and certainty and will be getting treatment now. One question: if she...
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    Thank you, Dear Alysia. I was getting concerned...

    Thank you, Dear Alysia. I was getting concerned because from all the posts I've read, it sounds like most people feel better after a couple of days. I dont have rash or fever but I do have hot...
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    Good luck, Susan! Let us know how it goes. I'm...

    Good luck, Susan! Let us know how it goes. I'm glad youre finally seeing simeine and have a support person with you. You sound prepared and strong. Go get your answers!
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    Felt crummy all day again today. It's been six...

    Felt crummy all day again today. It's been six days since the infusion. I wonder whether I'm fighting a cold or flu; or perhaps it's from the withdrawal after two big doses of prednisone and benadryl...
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    Elephant, why has it taken so long for the...

    Elephant, why has it taken so long for the doctors to give you Rituxan when you've had the disease since childhood? It seems like there is a lot of suffering, and potential damage, while Weggies have...
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    Thanks for all your responses. It helps. I felt...

    Thanks for all your responses. It helps. I felt quite a bit better yesterday and did what I always do; too much, and not enough rest. I'm kind of nauseous today, so I'm sipping tea and chicken soup...
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    That makes sense because I've also had weird...

    That makes sense because I've also had weird soreness and pins different from my usual. They had to give me second doses of both pred and benadryl when my ears and throats started itching and feeling...
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