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Type: Posts; User: me2

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    Re: Abatacept/Abrogate clinical trial

    Does anyone know when this will be available to the general public?
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    Re: Coronavirus and GPA

    I have a decontamination tool that I use on things brought in from the 'outside' and also on my vehicle. I use an ozone generator that I ordered online. It takes a little education to learn the...
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    Re: Coronavirus and GPA

    Hi Anne,

    Thanks for the mask offer. I may later take you up on that but for now I think I'm doing ok. I DO go once a week (or longer) for food and just take extra careful care with mask and loads...
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    Re: Coronavirus and GPA

    I just got off the phone with my infectious disease doctor and wanted to share a little of what I learned. I am a candidate for IVIG therapy based on my low antibodies (because of Rituxan) but she...
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    Re: Coronavirus and GPA

    Hi John,
    I'm not familiar with your whole story so what I say may be of no use. I do an inhaled antibiotic (Tobramycin) at home with a nebulizer. I had pneumonia and this is to help keep my lungs...
  6. Thread: Here I go

    by me2
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    Re: Here I go

    That's great news. You are making progress.
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    Re: Specialist in or near KY

    If Cleveland is an option it would be a great choice. Once you have everything figured out (relatively) and are stable you can always look for someone closer to home for more regular care. Then, your...
  8. Thread: Here I go

    by me2
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    Re: Here I go

    How have your sinuses been?
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    Re: Not a diagnosis I expected

    Welcome Jim,
    Your story is remarkably similar to mine. I was working on a line crew when I first became ill- 40 some years ago. Lineco was my insurance then- might be yours? You are certainly in a...
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    Re: EustachianTube Dysfunction: Balloon Dilation

    Larrysb- I have had stenosis procedure three separate times and it really worked wonders for me. This was many years ago. I guess my airway decided I'd been through enough for a while.
    You will be...
  11. Thread: Cataract Surgery

    by me2
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    Re: Cataract Surgery

    Wow, terrific news.
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    Re: Possible Wagner's but still in limbo

    I also have tinnitus in both ears but I know mine is not as bad as it is for some people. Mine is pretty tolerable but I can well imagine how it could really get to you. I miss the silence too....
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    Re: Possible Wegner's but still in limbo

    I wanted to just quickly chime in with Anne on Cytoxan. It is sometimes viewed as archaic and super dangerous. It's not- exactly. I myself took oral Cytoxan (forty years ago) for two years and with...
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    Re: Possible Wagner's but still in limbo

    I don't know a lot about the hearing loss issues. I myself had hearing loss that has gotten better but I don't think it's the same type as you have. I have had neurological cerebellum problems that...
  15. Thread: Donations

    by me2
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    Re: Donations

    I'm hoping a bit of extra love and attention helps to balance some of the extra 'challenges' of recent times.
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    Re: Possible Wegner's but still in limbo

    DRZ, I really like what you've said here. I had to tear up just reading it as some of my experience is quite like yours. So much suffering can be prevented with prompt appointments and treatment.
    ...
  17. Re: Outlook on recent diagnosis with lung complications

    I don't have a lot of experience with this but I do know of cases of people only have tracheotomy for a short period of time. My suspition is that it was more common in the past when treatments were...
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    Re: Possible Wagner's but still in limbo

    My biopsy was ordered by the ENT. I think this is the usual route. I like your idea of polite demand. One of my great lessons of this illness is becoming my own strong advocate. I have had this...
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    Re: Possible Wagner's but still in limbo

    Welcome. Your collection of problems certainly SOUND like they could be wegener's. If Wegener's is high on the suspect list then I would be very concerned about having to wait months to see a...
  20. Re: prescription process- the path from the Dr to the Pharmacy

    Update - 33 days after being prescribed Rituxan I now have an appointment to get the infusion- and a notebook of notes almost an inch thick. I need to just de-stress and get ready for the 5 hour...
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    Re: Happy birthday to me

    You have anything special planned? I think you need to get yourself a gift of some sort.
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    Re: Feeling frustrated.....

    I soooo understand your position. I've been told my current delays are 'because of the holidays' also. It doesn't help to hear that- it just doesn't. Our illness doesn't observe the holidays.
    It...
  23. Re: prescription process- the path from the Dr to the Pharmacy

    I DO appreciate your responses and your concern.
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    Re: A new year, new possibilities! (MikeG's back)

    It's good to hear that you are doing well. I have been through many ups and downs with prednisone weight myself. One of my 'secret weapons' is called "Miracle Noodles". Prednisone causes weight...
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    Re: How's all our Aussie friends?

    I had a visit with Anne today and we were wondering about y'all down there too. Hope everyone is out of harms way.
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