tag:blogger.com,1999:blog-22576999.post8717790070366977577..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: Valcyte UpdateSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-22576999.post-86113934449944740312008-09-10T11:49:00.000-04:002008-09-10T11:49:00.000-04:00Hi, Evie - This was an older blog entry that you r...Hi, Evie - <BR/><BR/>This was an older blog entry that you read from March 2007. I only took Valcyte for 2 months, then switched to Valtrex. For the full story, plus lots of information and links on CFS and Valcyte, please take a look at more recent blog entries at www.livewithcfs.blogspot.com. here are two entries in particular that might be helpful to you:<BR/><BR/>http://livewithcfs.blogspot.com/2008/01/treatment-update.html<BR/><BR/>http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html<BR/><BR/>For more on fibromyalgia and Valcyte, try the message boards at www.immunesupport.com.<BR/><BR/>Good luck - I hope that Valcyte helps you.<BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8559578015904942122008-09-09T19:56:00.000-04:002008-09-09T19:56:00.000-04:00My doctor has prescribed Valcyte 450 mg/1x daily f...My doctor has prescribed Valcyte 450 mg/1x daily for me. I have fibromyalgia and 2 infections in my system that have affected my immune system. I get sick very easily (asthmatic) and knocks me out. In addition, I have sleep apnea (diagnosed in june 08) and also a slipped disk (L5-S1) which is triggering my sciatic. I work on my feet (make up artist) and all in all, I feel terrible. So I will get this new med and start taking it in about 2 weeks time as I am on antibiotics now and need to finish those. Can anyone share any experiences they have had with fibro and this med? I am open to hearing everything as I think I need to touch base with people who are experiencing this pain, discomfort and sometimes depression that hits with these situations. I look forward to hearing from you!<BR/>Have a blessed day,<BR/>EvieEviehttps://www.blogger.com/profile/10043254274463139012noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-92135365994208227232008-06-07T17:14:00.000-04:002008-06-07T17:14:00.000-04:00Hi, Elizabeth - It's been awhile since I took Valc...Hi, Elizabeth - <BR/><BR/>It's been awhile since I took Valcyte, but I think it costs roughly $1500 without insurance and $200 with my insurance, per month (I may be a little off on those estimates).<BR/><BR/>This was an older blog entry that you read from March 2007. I only took Valcyte for 2 months, then switched to Valtrex. For the full story, plus lots of information and links on CFS and Valcyte, please take a look at more recent blog entries at www.livewithcfs.blogspot.com. here are two entires in particular that might be helpful to you:<BR/><BR/>http://livewithcfs.blogspot.com/2008/01/treatment-update.html<BR/><BR/>http://livewithcfs.blogspot.com/2008/04/low-dose-naltrexone-treatment-for-cfs.html<BR/><BR/>Good luck - I hope that Valcyte helps you.<BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78498739281339299642008-06-06T15:40:00.000-04:002008-06-06T15:40:00.000-04:00Hi Sue,I am a CFS sufferer for over 20 years. My ...Hi Sue,<BR/><BR/>I am a CFS sufferer for over 20 years. My doctor is considering putting me on the Montoya protocol.<BR/><BR/>I was just wondering.... You mention that the Valcyte prescription is expensive. Exactly how expensive is it? This would help me understand how this protocol will affect my pocketbook.<BR/><BR/>Thanks!Unknownhttps://www.blogger.com/profile/14546526941943602595noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-88414594287503104712007-08-01T15:58:00.000-04:002007-08-01T15:58:00.000-04:00Sue - This was an older blog entry that you read f...Sue - <BR/><BR/>This was an older blog entry that you read from March 2007. I only took Valcyte for 2 months, then switched to Valtrex. For the full story, plus lots of information and links on CFS and Valcyte, please take a look at more recent blog entries at www.livewithcfs.blogspot.com<BR/><BR/>Best of luck to you!<BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15864739863512327322007-08-01T10:16:00.000-04:002007-08-01T10:16:00.000-04:00hi sue!hope you are doing well...i am on week 6 of...hi sue!<BR/>hope you are doing well...<BR/><BR/>i am on week 6 of valcyte and also have mild symptoms. because my fog is so bad i also am not sure if i am worse than before a started (but i think a little).<BR/><BR/>i would be very interested to know how you are doing now....<BR/><BR/>thank you<BR/>all the best<BR/>sueAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-24286639715877249762007-04-21T15:18:00.000-04:002007-04-21T15:18:00.000-04:00Thanks Sue and anonymous, I'm going to post a lin...Thanks Sue and anonymous, I'm going to post a link to your blog on the Phoenix Rising CFS newsletter. <BR/><BR/>CortAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-2494839717296800982007-03-15T08:58:00.000-04:002007-03-15T08:58:00.000-04:00Congratulations, fogggygyrl! I'm glad to hear you...Congratulations, fogggygyrl! I'm glad to hear you're able to try anti-viral treatment. Since your CFIDS is severe and you're using the full dose, you should be prepared for a severe worsening for the first month or two, but hopefully, you'll start to improve after that. If you haven't already, check out the message boards at immunesupport.com. Look for the message threads on Valcyte. Hearing about others' experiences is invaluable. Good luck! Let me know how it goes.<BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78380402550429056712007-03-13T15:24:00.000-04:002007-03-13T15:24:00.000-04:00Thanks for keeping us posted on the Valcyte, Sue. ...Thanks for keeping us posted on the Valcyte, Sue. I just started last week but I am following the Montoya protocol. I have been bedridden with severe, progressive CFS/FMS for many years. I'll let you know how I fare too. So far, there's no change.<BR/><BR/>fogggygyrlAnonymousnoreply@blogger.com