tag:blogger.com,1999:blog-6613048419996588468.post5101114125604335769..comments2021-02-18T20:14:34.653+11:00Comments on portiafaceslife: iTP and me: More Numbers, More Patience!portiafaceslifehttp://www.blogger.com/profile/16631612441579012344noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-6613048419996588468.post-36525827975068294582010-03-08T19:14:14.576+11:002010-03-08T19:14:14.576+11:00WinRho is a good treatment to try. Also other imm...WinRho is a good treatment to try. Also other immunosuppressants like Imuran and CellCept. Then there's Rituxan which if it works lasts at least a year. I'm trying Nplate at the moment, and then there's the other new drug Promacta.<br /><br />You are right that wine won't taste nice if your taste is off with the steroids. I could only taste salt and sweet and nothing else. Very weird. I ate a lot of melon which tasted nicer to me than usual.<br /><br />You could try the forum over at http://pdsa.org/join-the-community/discussion-groups/forums.html<br />Lots of people there with ITP who know what you're going through.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6613048419996588468.post-21249398011882871832010-02-26T09:43:19.326+11:002010-02-26T09:43:19.326+11:00Thanks, Anonymous, for those reassuring remarks. ...Thanks, Anonymous, for those reassuring remarks. It's nice to know I'm not the only person with this condition. No-one in my family & group of friends had ever heard of it before.<br /><br />What other treatments have you tried?<br /><br />Varia - the annoying thing about the coffee is the taste in my mouth, so I don't enjoy coffee as much as before. I wonder what wine would taste like right now?<br /><br />The shoes are fun - they're Kumfs, & I've had them for a couple of years. A very wide fitting for my short wide feet.portiafaceslifehttps://www.blogger.com/profile/16631612441579012344noreply@blogger.comtag:blogger.com,1999:blog-6613048419996588468.post-60817874850558819572010-02-26T03:03:10.894+11:002010-02-26T03:03:10.894+11:00Bleh, not the best news on the platelet count. I a...Bleh, not the best news on the platelet count. I am continuing to be hopeful that your new doc (or should I just say your doc at this point) is going to be able to balance things better than just throwing the steroids at it. It sounds like she's really paying attention to all the details, which is good. I have to say, I would give up wine over coffee any day... although having to cut one and watch the other is no fun! <br /><br />Those shoes are super cute.Unknownhttps://www.blogger.com/profile/06256221197349994370noreply@blogger.comtag:blogger.com,1999:blog-6613048419996588468.post-8811425480156573042010-02-20T21:25:11.715+11:002010-02-20T21:25:11.715+11:00Your blog came up on my google alert for ITP. I&#...Your blog came up on my google alert for ITP. I've had ITP for 4 years now and am trying one of the new drugs with some success. Don't be too worried about being on steroids long term or over and over as there are other treatments to try. As long as your haematologist is experienced with ITP they will know what's out there. Good luck with your steroid taper.Anonymousnoreply@blogger.com