Results 1 to 4 of 4

Thread: Update on Lisa Marie

  1. 04-20-2011, 05:33 AM #1
    LisaMarie's Avatar
    LisaMarie
    LisaMarie is offline Registered User
    Join Date
    Jun 2010
    Location
    Richmond, MO
    Posts
    594

    Default Update on Lisa Marie

    Ok saw the pulmonary doc friday here...she read my sleep study and even though i have mild apnea...it is mainly in REM sleep ...so since my pft from mayo does not show asthma and the bronchoscopy shows signs of WG....she feels i may benefit from CPAP..as it may keep the tissue from rubbing. cpap fitting sleep test on the 27th of April...and the WG specialist wants me to start an arthritis med now ...Arava 20 mg...but i will call Mayo and see what they say...don t want to mess up my appointments up there in May ...Has anyone ever been put on Arava?......I have failed all the first choice drugs like imuran and cellcept.....on 10 mg of pred and holding...my jaw is killing me be I can handle it for a few more weeks...knee joints seem to be affected the worse right now...wish me luck....gotta get back to work
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

    My mojo for today.....gonna be johnny apple seed and just keep planting
    Lisa Marie
    The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!
    Reply With Quote Reply With Quote
  2. 04-20-2011, 05:37 AM #2
    Sangye's Avatar
    Sangye
    Sangye is offline Registered User
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,128

    Default

    I had a lot of apnea episodes during REM sleep (about 50) but they said that's normal. I hope the CPAP helps you!
    My blog http://sweetnotalways.blogspot.com/

    Reply With Quote Reply With Quote
  3. 04-20-2011, 06:18 AM #3
    Chris G's Avatar
    Chris G
    Chris G is offline Registered User
    Join Date
    Feb 2011
    Location
    Michigan
    Posts
    641

    Default

    Quote Originally Posted by LisaMarie View Post
    Ok saw the pulmonary doc friday here...she read my sleep study and even though i have mild apnea...it is mainly in REM sleep ...so since my pft from mayo does not show asthma and the bronchoscopy shows signs of WG....she feels i may benefit from CPAP..as it may keep the tissue from rubbing. cpap fitting sleep test on the 27th of April...and the WG specialist wants me to start an arthritis med now ...Arava 20 mg...but i will call Mayo and see what they say...don t want to mess up my appointments up there in May ...Has anyone ever been put on Arava?......I have failed all the first choice drugs like imuran and cellcept.....on 10 mg of pred and holding...my jaw is killing me be I can handle it for a few more weeks...knee joints seem to be affected the worse right now...wish me luck....gotta get back to work
    I'm sorry, I have no experience with Avara, but I'm wondering a few things........what's causing your jaw pain? And why did you fail Imuran and Cellcept? Too many side effects? Or did they just not work for you?
    Reply With Quote Reply With Quote
  4. 04-20-2011, 09:35 PM #4
    LisaMarie's Avatar
    LisaMarie
    LisaMarie is offline Registered User
    Join Date
    Jun 2010
    Location
    Richmond, MO
    Posts
    594

    Default

    Imuran and Cellcept both tripled my liver enzymes.
    I have a mandible mass on my right side and have jaw pain associzted with it. I have sinus, trach, bronch,ears and questionable heart invovlement. When i first got dx the right side of my face swelled up....i guess i rreact differently to WG.....lucky me...not
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

    My mojo for today.....gonna be johnny apple seed and just keep planting
    Lisa Marie
    The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!
    Reply With Quote Reply With Quote
« Previous Thread | Next Thread »

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  

Forum Rules