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Author Topic: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!  (Read 2069 times)

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Offline blondbeauty

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  • Posts: 1,784
RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« on: December 04, 2007, 10:59:26 AM »
I am going now to Felix's house. He is very depressed. The resistance tests showed he is resistant to every single med. They added Norvir to his treatment of Sustiva and Truvada.
He will start taking a new antiretroviral in 3 weeks. One that is not approved yet in Europe. The hospital is going to bring it from the USA for him. I don't know yet which medication it is...we just spoke through the phone and is very nervous and upset. Ill take a look at the paperwork from the hospital and post it here.
 :-\
Thank you all for your help.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline newt

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  • Posts: 3,877
  • the one and original newt
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #1 on: December 04, 2007, 11:30:21 AM »
They did what?  ??? ??? ???

The mutation data please.

Hug too  :)

- matt
"The object is to be a well patient, not a good patient"

Offline Robert

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Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #2 on: December 04, 2007, 12:13:03 PM »
You've got a lot of people reading this, wondering what's going on and hoping for the best.....

robert
..........

Offline blondbeauty

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  • Posts: 1,784
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #3 on: December 04, 2007, 12:57:49 PM »
We donīt have the mutation data. I got it wrong, they did not put him on Norvir. They added Videx. In three weeks he will be on Maraviroc, Isentress (these 2 in an expanded access program) and Prezista. I donīt understand very well the decision of adding Videx at this point. But they took this decision in a "crisis meeting" at the hospital.  His VL is still above 100.000 copies (having started the 1st of august). They didnīt give him the mutation data list.
Thanks for your help. We are now going out to buy a pair of earphones for his computer and have somethig to eat.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline newt

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  • the one and original newt
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #4 on: December 04, 2007, 01:09:22 PM »
It would be better just to stop everything. There's no point taking drugs that are doing nowt. This is essentially ddI monotherapy and therefore will lead to further nuke resistance. Though perhaps not in 3 weeks.

All 3 new drugs? Prezista + Insentress + 1 or 2 or 3 nukes is prob enough/workable.

Maraviroc: requires a tropism (CCR5) test first ie Trofile. Do not use without. It's pointless using it against non-CCR5 type virus.

I really would like to see the mutation data esp on PIs and nukes.

- matt
"The object is to be a well patient, not a good patient"

Offline Dragonette

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    • NotPerfectAtAll
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #5 on: December 04, 2007, 01:34:56 PM »
I hope and pray things will work out asap. So sorry to hear this.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline blondbeauty

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  • Posts: 1,784
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #6 on: December 04, 2007, 04:03:36 PM »
Thank you Matt. Today he had 8 tubes of blood drawn to see if maraviroc is going to work. He is going to ask for the mutation profile on the next visit.  ;)
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #7 on: December 04, 2007, 06:09:43 PM »
Presista, Isentress and Truvad have thus far performed very well together for multiple resistance patients.
"I’ve slept with enough men to know that I’m not gay"

Offline blondbeauty

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  • Posts: 1,784
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #8 on: December 04, 2007, 07:20:13 PM »
Thank you Philly. We went out, ate pancakes with plenty of strawberry syrup, strawberry milkshakes... and went shopping: earphones, a new keyboard, sweaters, etc. He is feeling better now.  :)
Thank you all for your great help. I wish I could post the mutations here. maybe in 3 weeks time. He is not very sure if Prezista is going to be one of the meds (he can't remember clearly but it is the only name it sounds familiar to him because he was too nervous during the appointment with the Dr). The only thing I know for sure is the paperwork he was carrying: he had the copies of the authorisations he had to sign for Maraviroc and Isentress...and maraviroc depends on the results of the next tests.
What he knows for sure is that he was told that he got the HIV strain from someone who had been treated with everything.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline gerry

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  • Posts: 522
  • Joined AM Feb 2003
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #9 on: December 05, 2007, 10:21:52 PM »
Matt makes very good points, RE:

1. Throwing videx to an already failing regimen (with the virus resistant to all 3 meds) does not make sense.  It will induce more nuke resistance.  An option while waiting is to stay on lamivudine alone or stop the meds if his CD4 count is reasonably high.  Something to discuss with the doc.

2. Being resistant to all 3 drugs (Sustiva + Truvada) does not mean he is resistant to all nukes (unless he had acquired other nuke resistance from the initial infection).  For instance, a K103N, M184V and K65R would produce resistance to Sustiva + Truvada but this pattern makes AZT + lamivudine useful if it can be combined with other active drugs (such as boosted PI & Isentress).

Did he have baseline resistance testing before the meds were started?

Offline jack

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  • fomerly the loser known as Jake
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #10 on: December 06, 2007, 05:57:30 AM »
I was resistant to all drugs and spent several years in trials and three years off drugs. My VL was between 5000 and 100000(and finally a Million), most of time till last year when I started on Prezista. Prezista is a miracle. No sides. Let me repeat that,NO SIDES! This is the longest I have ever been on a drug without resistance issues.

I had Drs. tell me I might as well stop because of resistance but recently in my last regimen they had some new studies that indicated taking drugs you were resistant too was better than nothing at all.  I guess they had a point , if you are already resistant to everything,how bad can it fuck you up?


Offline blondbeauty

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  • Posts: 1,784
Re: RESISTANT TO EVERYTHING (FELIX) NEWT NEED YOUR HELP!
« Reply #11 on: December 07, 2007, 12:13:10 PM »
Gerry and Jack i agree with both of. What is the pint of putting him on Videx? But on the other hand his CD4 count has increased on 150 in 4 months on treatment. Anyway I was unable to go with him to the Dr. I will try to be there next time and post all the information here.
Thank you!
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

 


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