The Hammer - Vistide and Dr. Peterson

[jane52]

Thanks for the follow up information. Any news on the oral form of Vistide?

The oral form of Vistide is in stage 3 now. It's at a place where it will get pushed through or trashed, we don't know which. It's ready for patient trial if it makes it through.

 

[Rooney]

The oral form of Vistide is in stage 3 now. It's at a place where it will get pushed through or trashed, we don't know which. It's ready for patient trial if it makes it through.

Hi Jane,
Please be more specific about its status. It's doing great for transplant patients. Pushed through for what?

 

[Sushi]

The oral form of Vistide is in stage 3 now. It's at a place where it will get pushed through or trashed, we don't know which. It's ready for patient trial if it makes it through.

Is this related to CMX001?

Sushi

 

[jane52]

Is this related to CMX001?

Sushi

Yes, CMX001. I asked Dr. Dan Peterson about it and he told me it's ready for patient trials, If it makes it past the stage it's at now. I don't understand Exactly, but apparently it will get the go ahead or get trashed. I am so hoping for a go ahead!

 

[jane52]

Hi Jane,
Please be more specific about its status. It's doing great for transplant patients. Pushed through for what?

I'm assuming he means for CFS patients with specific viruses?

 

[Sushi]

Yes, CMX001. I asked Dr. Dan Peterson about it and he told me it's ready for patient trials, If it makes it past the stage it's at now. I don't understand Exactly, but apparently it will get the go ahead or get trashed. I am so hoping for a go ahead!

There are several patient trials going on now--but we are not eligible for them.

Sushi

 

[vli]

My next infusion appt. is Monday, Oct. 15th. It seems I keep missing you Anne! Then Tuesday, Oct. 30th.

Hi Jane,

was wondering if u had any updates on how u're feeling on vistide? do u know how many patients aside from you (u don't have to name them!!) are also on vistide? thanks so much.

vli

 

[vli]

Vistide Experiences

Is Dr. Peterson the only Doctor prescribing Vistide?

Sorry for the non sequitor way I am asking this, but does anyone know?

 

[Tristen]

Greetings all. been a while. I was on Vistide all of 2009 with Dr P. It was being CMV+ that justified the Tx for me. I made an 80% improvement on that Tx and have not relapsed since. The IV Vistide is a very dangerous drug, especially to be on it for a year like that. But I was so very sick, I trusted Dr P saying it would help me.....it did. I do not know if it's being used or is even effective for the other herpes viruses, but I suspect it is. It's indicated for HIV related CMV+ retinitis in the drug books and is not typicallly used over 3 months for that. Dr P sees the drug as the best yet for some of us me/cfs folks. I believe he will particpating in the oral form (CMX001) trials.....not sure. The oral form (if it makes it to phase 4) is sure to be one of the best drugs for us yet.

best

 

[heapsreal]

Greetings all. been a while. I was on Vistide all of 2009 with Dr P. It was being CMV+ that justified the Tx for me. I made an 80% improvement on that Tx and have not relapsed since. The IV Vistide is a very dangerous drug, especially to be on it for a year like that. But I was so very sick, I trusted Dr P saying it would help me.....it did. I do not know if it's being used or is even effective for the other herpes viruses, but I suspect it is. Dr P sees the drug as the best yet for some of us. I believe he will particpating in the oral form (CMX001) trials.....not sure.

best

thanks for that update. Im a fellow cmv'er as well. good to see other good treatments for this virus and encouraging that u have maintained your improvement since stopping visi. Im hoping the same with valcyte.

cheers!!!

 

[Tristen]

thanks for that update. Im a fellow cmv'er as well. good to see other good treatments for this virus and encouraging that u have maintained your improvement since stopping visi. Im hoping the same with valcyte.

cheers!!!

cheers heaps!!!!!

 

[snowathlete]

Greetings all. been a while. I was on Vistide all of 2009 with Dr P. It was being CMV+ that justified the Tx for me. I made an 80% improvement on that Tx and have not relapsed since. The IV Vistide is a very dangerous drug, especially to be on it for a year like that. But I was so very sick, I trusted Dr P saying it would help me.....it did. I do not know if it's being used or is even effective for the other herpes viruses, but I suspect it is. It's indicated for HIV related CMV+ retinitis in the drug books and is not typicallly used over 3 months for that. Dr P sees the drug as the best yet for some of us me/cfs folks. I believe he will particpating in the oral form (CMX001) trials.....not sure. The oral form (if it makes it to phase 4) is sure to be one of the best drugs for us yet.

best

Hi Tristen, nice to see you and hear you are doing well! Thats fantastic and the trail certainly sounds promissing too.

 

[Tristen]

Hi Tristen, nice to see you and hear you are doing well! Thats fantastic and the trail certainly sounds promissing too.

Greetings Snow. Hope you been doing well as possible.

 

[Tristen]

thanks for that update. Im a fellow cmv'er as well. good to see other good treatments for this virus and encouraging that u have maintained your improvement since stopping visi. Im hoping the same with valcyte.

cheers!!!

Whatever became of the NK study you all there down under had happening? I believe it to be key. Do you know what became of the vaccine study too?

best

 

[heapsreal]

Whatever became of the NK study you all there down under had happening? I believe it to be key. Do you know what became of the vaccine study too?

best

I dont know what happen to the vaccine study. But the nk study confirmed thatus cfs/me have poor nk function and specifically poor nk bright cell function. cd8 t cells were also said to function poorly.
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf
They are organising another study to be started soon on immunological and genomic issues in cfs/me

 

[Tristen]

I dont know what happen to the vaccine study. But the nk study confirmed thatus cfs/me have poor nk function and specifically poor nk bright cell function. cd8 t cells were also said to function poorly.
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf
They are organising another study to be started soon on immunological and genomic issues in cfs/me

Thanks Heaps! My NK lytic activity remains bismal (always under 4) even when doing better. For me it's not connected to level of function, but I do believe it's a core issue. Thanks for the link.

 

[alexk201]

My next infusion appt. is Monday, Oct. 15th. It seems I keep missing you Anne! Then Tuesday, Oct. 30th.

Hi Jane, I was just wondering how you did with the Vistide treatment after all this time? I am thinking about going for it as well.

 

[vli]

hi Alex, seeing your location, i was wondering if u might tell us where u would get it infused?

i am in hong kong and am doing badly on cidofovir (generic vistide) even though my labs are 'normal'. i wonder if you have checked with Gilead to make sure they ARE selling Vis again since they had ceased manufacture before the summer.
http://www.ashp.org/DrugShortages/Current/bulletin.aspx?id=994

 

[alexk201]

Hi Vli.......I had no idea that Gilead ceased Vis production. I spoke with Dr. Enlander about a year ago and he told me that he would do it if I decided to pursue that route.

 

[vli]

wow really alexk201? he wrote this on his facebook wall in April: "we have tried cidofovir on one patient three years ago with mixed result. It is quite toxic and is very expensive approx $800 per vial plus the infusion cost given twice monthly"