Re: Re: hair loss /

[Guest guest]

Royce,

Are you using a prednisone cream on the scars? I know you are taking it in pill form-- I've never been fortunate enough to have it remove scars-- for me, it thins my skin and I end up with more scarring down the road.

I agree, if people can tolerate the side effects and it helps, then taking prednisone is one choice-- most of us at high doses can't tolerate over the periods of years that we would need it to control the sarc--

Actually, control is an illusion-- stop the pred and the symptoms come back-- and the new research is showing that for those of us that had to start taking it in the first place, will have a remission (of sorts) - it more that the inflammation decreases, but after a period of time when we've weaned off it-- then the sarc comes back-- with more systemic involvement.

The same can be true with the other medication choices also-- with chronic sarcoidosis, you'll need constant treatment. Take them away, and the flares knock you on your butt.

Take care,

Tracie

NS Co-owner/moderator> > From: Dancing Angels Farm <dancingangelsfarm@ hotmail.com>> Subject: Re: hair loss / > To: Neurosarcoidosis@ yahoogroups. com> Date: Wednesday, April 29, 2009, 2:25 AM> > > > > I wasn't on any meds and I still lost 50-70% of all my hair last year. It was so bad that I ended up shaving off what was left. Doc said it was alopecia areata (AA) which is an autoimmune disorder in which the body sees hair as an invader. My hair is just starting to come back in but is now mostly gray (mainly velous hair aka peach fuzz / baby hair). I

asked around a bit when this happened. Apparently not a common symptom of NS or sarc but there appears to be a small percentage of folks that experience this. More interesting was the high number of folks with AA that have other autoimmune illnesses such as lupus, arthritis, etc. > > Peace, Tony> > > > > > From: Moish Pomeranc <moishpomeranc@ ...>> > Subject: hair loss> > To: neurosarcoid66@ ..., neurosarcoidosis@ yahoogroups. com> > Date: Tuesday, April 21, 2009, 4:19 AM> > > > > > > > > > Hi,> > First i want to thank all those who answered me

and helped me out. Sorry i didn't answer sooner or personally, but I have been having a hectic month and more.> > > > I am not taking any medicines besides eltroxin for my thyroid . However, I have felt that I was / am going thru some problems with ns. the thing is recently, I lost all of hair on top of my head. It was thinning, but not at a rate that all of once, I have nothing left. Can a flare-up of Ns cause this? Both my parents had hair in their old age, so I don't think that's the cause. > > > > > > > > See all the ways you can stay connected to friends and family > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> > Drag n' dropâ€"Get easy photo sharing with Windows Liveâ„¢ Photos.> > > > http://www.microsof t.com/windows/ windowslive/ products/ photos.aspx> >>

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I've been on the pred for 5 years or so and I've got some Osteoporosis going on in my lower spine and sarc in the upper spine. I get up and fight to walk everyday but when I'm really tired or right after treatment I am more wobbly I give in to the wheelchair. It beats falling and breaking one of these brittle bones. So far I have avoided diabetes which really surprises me since it runs in my family if you are older and an over weight woman you wind up with it.

I was hoping since they want to change the Cytoxin they'd replace the pred too. She has me back down to 15 a day but every 3 weeks when I get my treatment they put a combined 110 ml of Anzemet & Dexamethasone and it's my memory, right or wrong, when I looked them up on WebMD they're both steroid thingees to prevent nausea. I haven't thrown up once since I started this crud. LOL I've gained 60 lbs on chemo? That doesn't sound right.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...> > From: Dancing Angels Farm <dancingangelsfarm@ hotmail.com>> Subject: Re: hair loss / > To: Neurosarcoidosis@ yahoogroups. com> Date: Wednesday, April 29, 2009, 2:25 AM> > > > > I wasn't on any meds and I still lost 50-70% of all my hair last year. It was so bad that I ended up shaving off what was left. Doc said it was alopecia areata (AA) which is an autoimmune disorder in which the body sees hair as an invader. My hair is just starting to come back in but is now mostly gray (mainly velous hair aka peach fuzz / baby hair). I

asked around a bit when this happened. Apparently not a common symptom of NS or sarc but there appears to be a small percentage of folks that experience this. More interesting was the high number of folks with AA that have other autoimmune illnesses such as lupus, arthritis, etc. > > Peace, Tony> > > > > > From: Moish Pomeranc <moishpomeranc@ ...>> > Subject: hair loss> > To: neurosarcoid66@ ..., neurosarcoidosis@ yahoogroups. com> > Date: Tuesday, April 21, 2009, 4:19 AM> > > > > > > > > > Hi,> > First i want to thank all those who answered me

and helped me out. Sorry i didn't answer sooner or personally, but I have been having a hectic month and more.> > > > I am not taking any medicines besides eltroxin for my thyroid . However, I have felt that I was / am going thru some problems with ns. the thing is recently, I lost all of hair on top of my head. It was thinning, but not at a rate that all of once, I have nothing left. Can a flare-up of Ns cause this? Both my parents had hair in their old age, so I don't think that's the cause. > > > > > > > > See all the ways you can stay connected to friends and family > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _> > Drag n' dropâ€"Get easy photo sharing with Windows Liveâ„¢ Photos.> > > > http://www.microsof t.com/windows/ windowslive/ products/ photos.aspx> >>