Update on Lisa Marie

[LisaMarie]

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:biggrin1:

[Sangye]

I had a lot of apnea episodes during REM sleep (about 50) but they said that's normal. I hope the CPAP helps you!

[Chris G]

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:biggrin1:

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?

[LisaMarie]

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 r:flapper:react differently to WG.....lucky me...not