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Efficacy and Tolerance of the Switch From Enfuvirtine to Raltegravi   Message List  
Reply | Forward Message #1110 of 1195 |
Re: [FuzeonSupport] Re: I need your knowledge #2

Nelson, thank you so much for such a fast response. It seems a shame to me that when they went into production and research on the CCr5 med, that they didn't make sure to include both receptor blockers 4 and 5 in the drug. This seems like it was foolish since the virus can convert to the other receptor.  I have not taken an NRTI like Viramune or that catagory for over 13 years, does that matter with resistance to the class? I have had wild virus three times after that.
 
You didn't mention my going on TMC114 at the same time as TMC125 and Raltegravir. I am resistant to all other prot.inhibitors, except I have never taken Tipranivir, would that be better than the TMC prot.Inhibitor?
 
Also, you didn't mention the new nukes I mentioned....some are in phase 1/to phase 2 trials now, and I would assume there will be studies soon, but I am scared to wait any longer. (see the list in the 3rd paragraph of my letter below).
 
Robert
 
 
Dear Nelson:
 
I am writing hoping I am not bothering you, this is my 2nd letter to you.I am writing because I know you and I are basically in the same position as far as our HIV. Drugs I have taken before are everything except Abacivir (got a skin rash so after 2 weeks they took me off of it) and never took
Tipranavir. My t cells have been under 25 for 8 years now. I tried Fuzeon unfortunately there were no other new drugs at the time and within a month, I became resistant and my t cells fell from 75 back to the current level.
 
I signed up to start a trial of the new TMC prot.Inhibitor, The new CCR5 blocker and the new Integrase inhibitor. My results came back yesterday that I cannot get on the CCR5 trial because I have dual-virus (which I kind of figured after 18 years), so the doctor is recommending both TMC drugs and MK0518. I read several months ago a post that you placed in the group about taking I think 2 of these and turning resistant. Since I have been without a good combo for 8 years now, I am very concerned about the same thing.
 
Are there any things you might recommend? Anything would be helpful before I make the decision. I see there are 2 new drugs entering Phase 2 trials, TNX 355 and .new NRTI's...Elvucitabine (ACH-126), Achillion, Apricitabine (AVX754), Racivir (PSI 5004). There is also Bevirimat (PA-457), Budding inhibitor and
Valproic acid, [Depakoteā„¢, Abbott].
 
How do you feel about all of this, the combo of the 2 new TMC drugs with
MK-0518, or waiting for one of the other I listed. Unfortunately I have had an illness for the first time in years, starting in November, where I lost 45 pounds so far asnd have diahrrea almost every day so that's been horrible, so a time element is important as well. I would really be interested in your opinions on all of this.
 
Most sincerelyu
 
Robert Siegel
Dear Robert
 
 
I am so sorry that you are going through all of this and that you turned out to be dual tropic in the tropism test for Maraviroc
 
I would suggest that you make sure that you have sensitivity to TMC 125 (that is the NNRT that I am assuming you are about to get on). Combining it with Raltegravir (Isentress or MK 518)  would probably do wonders with you with a background of nukes like Truvada (provided that your kidneys are OK)
 
Just make extra sure that you have full sensitivity to TMC 125.
 
I am getting emails from all over from people who have turned undetectable for the first time in years with raltegravir plus Prezista or TMC 125.  Make sure you talk to your doctor about how you guys would manage immune reconstitution syndrome when you start the new drugs and your immune system starts getting better. Most people feel like crap during the first weeks and it is key that you do not stop your meds. You can read more about IRIS here
 
TNX 355 may be dead since Genetech bought TANOX and they may not have any interest in HIV.  Few activists seem to be trying to convince Genentech to not drop the drug.
 
I am giving a lecture on all this in Houston on July 11th and will video tape it to post it on the internet for all to see.
 
let me know if you need anything else. It is very stressful to try to make the right choice now and not screw up your future options.
 

Regards,

Nelson Vergel
powerusa dot org


PoWeRTX@... wrote:
In a message dated 7/3/2007 3:08:35 P.M. Central Daylight Time, mntwister@... writes:
Dear Nelson:
 
I am writing hoping I am not bothering you, this is my 2nd letter to you.I am writing because I know you and I are basically in the same position as far as our HIV. Drugs I have taken before are everything except Abacivir (got a skin rash so after 2 weeks they took me off of it) and never took
Tipranavir. My t cells have been under 25 for 8 years now. I tried Fuzeon unfortunately there were no other new drugs at the time and within a month, I became resistant and my t cells fell from 75 back to the current level.
 
I signed up to start a trial of the new TMC prot.Inhibitor, The new CCR5 blocker and the new Integrase inhibitor. My results came back yesterday that I cannot get on the CCR5 trial because I have dual-virus (which I kind of figured after 18 years), so the doctor is recommending both TMC drugs and MK0518. I read several months ago a post that you placed in the group about taking I think 2 of these and turning resistant. Since I have been without a good combo for 8 years now, I am very concerned about the same thing.
 
Are there any things you might recommend? Anything would be helpful before I make the decision. I see there are 2 new drugs entering Phase 2 trials, TNX 355 and .new NrTI's...Elvucitabine (ACH-126), Achillion, Apricitabine (AVX754), Racivir (PSI 5004). There is also Bevirimat (PA-457), Budding inhibitor and
Valproic acid, [Depakoteā„¢, Abbott].
 
How do you feel about all of this, the combo of the 2 new TMC drugs with
MK-0518, or waiting for one of the other I listed. Unfortunately I have had an illness for the first time in years, starting in November, where I lost 45 pounds so far asnd have diahrrea almost every day so that's been horrible, so a time element is important as well. I would really be interested in your opinions on all of this.
 
Most sincerelyu
 
Robert Siegel
Dear Robert
 
 
I am so sorry that you are going through all of this and that you turned out to be dual tropic in the tropism test for Maraviroc
 
I would suggest that you make sure that you have sensitivity to TMC 125 (that is the NNRT that I am assuming you are about to get on). Combining it with Raltegravir (Isentress or MK 518)  would probably do wonders with you with a background of nukes like Truvada (provided that your kidneys are OK)
 
Just make extra sure that you have full sensitivity to TMC 125.
 
I am getting emails from all over from people who have turned undetectable for the first time in years with raltegravir plus Prezista or TMC 125.  Make sure you talk to your doctor about how you guys would manage immune reconstitution syndrome when you start the new drugs and your immune system starts getting better. Most people feel like crap during the first weeks and it is key that you do not stop your meds. You can read more about IRIS here
 
TNX 355 may be dead since Genetech bought TANOX and they may not have any interest in HIV.  Few activists seem to be trying to convince Genentech to not drop the drug.
 
I am giving a lecture on all this in Houston on July 11th and will video tape it to post it on the internet for all to see.
 
let me know if you need anything else. It is very stressful to try to make the right choice now and not screw up your future options.
 

Regards,

Nelson Vergel
powerusa dot org




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Tue Jul 3, 2007 10:24 pm

mntwister
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Forward
Message #1110 of 1195 |
Expand Messages Author Sort by Date

Efficacy and Tolerance of the Switch From Enfuvirtine to Raltegravir in Antiretroviral Therapy Regimen in HIV Patients With Undetectable Viral Load (EASIER) ...
PoWeRTX@...
nelsonvergel
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Jun 28, 2007
5:19 am

Dear Nelson: I am writing hoping I am not bothering you, this is my 2nd letter to you.I am writing because I know you and I are basically in the same position...
mntwister
Offline Send Email
Jul 3, 2007
8:06 pm

In a message dated 7/3/2007 3:08:35 P.M. Central Daylight Time, mntwister@... writes: Dear Nelson: I am writing hoping I am not bothering you, this is my...
PoWeRTX@...
nelsonvergel
Offline Send Email
Jul 3, 2007
9:04 pm

Nelson, thank you so much for such a fast response. It seems a shame to me that when they went into production and research on the CCr5 med, that they didn't...
mntwister
Offline Send Email
Jul 3, 2007
11:30 pm

In a message dated 7/3/2007 6:31:29 P.M. Central Daylight Time, mntwister@... writes: Nelson, thank you so much for such a fast response. It seems a...
PoWeRTX@...
nelsonvergel
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Jul 4, 2007
12:10 am

Nelson, I live in northern Minnesota, north of Duluth, and I go to Dr. Keith Henry in Minneapolis, who I have high regard for. I am sure you have heard of...
mntwister
Offline Send Email
Jul 4, 2007
4:25 am

In a message dated 7/3/2007 11:26:01 P.M. Central Daylight Time, mntwister@... writes: Nelson, I live in northern Minnesota, north of Duluth, and I go to...
PoWeRTX@...
nelsonvergel
Offline Send Email
Jul 4, 2007
4:55 am

Hi Nelson / Robert Thanks Nelson for the discussion and Robert for sharing a very similar story. My viral load is off the chart and my CD4 below 20. I take...
CurtisHome
tinnmanni
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Jul 4, 2007
5:55 pm

In a message dated 7/4/2007 12:56:15 P.M. Central Daylight Time, curtishome@... writes: My doctor tells me that Mk 518 and Prezista are available to...
PoWeRTX@...
nelsonvergel
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Jul 4, 2007
11:40 pm

Brent I started taking TMC 114+125 + Truvada + DDI and after 4 weeks went from 60K viral load to "0" And TCells went from 29 to 200+ And it has been like that...
Jorge Lallemand
jlallema
Offline Send Email
Jul 4, 2007
11:43 pm

Brent, sound like we are in the exact same position. It's been hard, as I am sure you know, waiting for these meds. When my t count is under 20 (been that way...
Rob
mntwister
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Jul 5, 2007
2:40 pm
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