Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 Thanks Diane. It's stories like yours that make me reluctant to use Cytoxan. We'll see what the doctors say when I see them next month. Thanks again! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Monday, December 15, 2008 2:44:36 PMSubject: re:MB Dermatomyositis Hi I was on Cytoxan for my Polymyositis and PF both for 13 months. It definately helped my lungs stablize but the last 6 months made my muscle disease worse. Felt like it was affecting even my nerves and all my bones as well. I felt like my body was a big giant throbbing toothache for a while until they finally took me off. I was almost bedridden because they thought I was toxic from taking it so long. My pulmodude and rheummy have a difference of opinion! Well can't take it anymore so I have not been on anything since June now. Thank God for Loratab because I need it to get me thru the days. Now that I have built up a level I'm not so bad at walking and showering (with continous o2) like I was. Worries me there is nothing my body accepts to help it though! Anyway-I hope it works for you if this is what you need to survive. We all have different ways our body tells us.Diane PF,Raynauds, Sjorgrens, PM 2006 PH2008 Quote Link to comment Share on other sites More sharing options...
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