tag:blogger.com,1999:blog-2464163302553827777.post2096854740075883693..comments2023-11-02T13:52:32.145+02:00Comments on Chronicles of an NF survivor: Another PVNS patient on ImatinibSarah Kleinhttp://www.blogger.com/profile/17381531433867772947noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-2464163302553827777.post-73435859177170740062011-01-14T01:51:58.532+02:002011-01-14T01:51:58.532+02:00Hi its now January 2011 and ther seems to be a gap...Hi its now January 2011 and ther seems to be a gap in communiction with PVNS sufferers. I have recently been diagnosed PVNS in my right knee- had arthroscopy de-bulking of my knee and biospies taken in October 2010 and am only just back to work. I have been told my condition is rare and that I must be closely followed up in six months from Jan 2011 and if my knee shows re-occurance then further surgery,de-bridement and maybe radiotherapy. Decided to take "Litozin-100% rosehip extract with homeopathic anti-inflammatory and pain relieving actions- too early to say if effective. Also taking cod liver oil nt able to take glycosimine for joint mobility as the calcium content interacts with other prescribed medication that I have to take. Going to be reviewed by the physiotherapy department (who have never heard of my condition!!) Want to do all I can to stay as mobile and in my job which is on my feet for most of the time- I just can't afford to loose my job and this condition is starting to really worry me. My knee specialist has quite frankly brushed over the whole thing. Does anyone out ther with PVNS know about the use of a drug "Imatnib". I am going to have to be pro-active about this disease from now on.<br /><br />Would be great to here new comments<br /><br />thanks MMTHOMAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-35247327946601980402009-11-18T00:19:14.978+02:002009-11-18T00:19:14.978+02:00hi
Really pleased to find you guys!
I have pvns ...hi<br /><br />Really pleased to find you guys!<br /><br />I have pvns and am hoping for imatinib. I have been told for the funding I need evidence of people who have tried it and that it works! Do you know more about the 5 people mentioned?<br /><br />my email is kevin@glastonburys.co.uk<br /><br />many thanks<br />Anneannehttps://www.blogger.com/profile/09136586571060712033noreply@blogger.comtag:blogger.com,1999:blog-2464163302553827777.post-69264741702084599862009-07-10T17:34:28.378+03:002009-07-10T17:34:28.378+03:00Hi, Sarah. I guess you can't consider this as...Hi, Sarah. I guess you can't consider this as treatment instead of the surgery? Or am I misunderstanding, and that is what you're thinking? I love the idea of the least invasive treatment, if there's even a chance it will help. Sending many hugs and good thoughts over the miles.Jackie Pellegrino, Oct98noreply@blogger.com