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Author Topic: Just got my drug resistance test back  (Read 2449 times)

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Offline Jayad

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Just got my drug resistance test back
« on: September 08, 2010, 01:44:24 PM »
I am really worried, I was diagnosed in April of this year and just got back my drug resistance labs.  I am resistant to almost every NNRTI.  I wanted to go on Altripla when I was ready to take meds and I cannot take that.  Am I stupid to be worrying about this?  I feel that my treatment will be limited and I am in more danger of developing AIDS.  My doctor didn't seem worried but I still am kinda scared.  Anyone out there have a form of HIV that has lots of drug resistance??  Some comments of reassurance would help alot  :-[
April 21, 2010-Tested Positive
May 26, 2010-CD4-692 (39%) VL 17100. No Meds.
September 8, 2010-CD4-551 (37%) VL 10241 Still no Meds
Found to have resistance to Videx, Rescriptor, Sustiva, Viramune, Viracept.
December 1, 2010-CD4-476 (34%) VL 38000.
December 5, 2010-Started Combivir.
January 13, 2011-No CD4 Count Done. VL 190!!!!!!
January 15, 2011-Started Viread and Intelence
Feb 15, 2011-Undetectable!!!
April 15, 2011-CD4 898 (43.4%) U/D

Offline Inchlingblue

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Re: Just got my drug resistance test back
« Reply #1 on: September 08, 2010, 02:02:22 PM »
Of course it always seems better on the face of it to get back a resistance report that says all treatment options are available to you but having resistance to efavirenz and other NNRTIs is certainly not the end of the world, especially in this day and age.

I started meds in July 2009 with Isentress/Truvada specifically because I wanted to avoid efavirenz and other NNRTIs. You have lots of other options if this was your only resistance issue. Not to mention there's a newer NNRTI, Intelence, that can be taken by people who have efavirenz resistance.

This link is helpful in determining the best combo to start with:


http://www.hopkins-aids.edu/q_a/patient/recent_questions/lost_on_choosing_medication.html?contentInstanceId=513447&siteId=7151

Offline aztecan

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Re: Just got my drug resistance test back
« Reply #2 on: September 08, 2010, 03:56:46 PM »
Hey Jayad,

OK, so the non-nukes are pretty much out of the picture. That is not the end of the world.

You have the nukes, the PIs, integrase inhibitors, entry inhibitors and there are a few more in the pipeline.

I fully understand your trepidation. When I was diagnosed, there were no meds, not even AZT.

But, by the grace of God/dess, I am still here. Don't let this hiccup cause you to panic. You have every reason to believe you will live to be a dottering old fart like myself!  ;)

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline newt

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Re: Just got my drug resistance test back
« Reply #3 on: September 08, 2010, 04:14:18 PM »
Hello

Are you resistant to every NNRTI or just Viriamune (nevirapine) and Sustiva (Efavirenz)?

Newer NNRTIS are able to overcome nevirapine/efavirenz resistance.

our treatment options are still good.

You can take an integrase ihibitor (ie Isentress) or any number of boosted PIs instead.

I have NNRTI resistance and have done well, very well, without them. My dosing is 1 x day. Okay it's 3 tablets but it's still very convenient. And, important, works with practically no side effects.

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

Offline Jayad

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  • Posts: 26
Re: Just got my drug resistance test back
« Reply #4 on: September 08, 2010, 06:23:53 PM »
I am resistant to all NNRTIs except Intelence (etravirine).  I'm also resistant to the PI Viracept (nelfinavir mesylate).  Im just upset because it's something I didnt think about being a problem. 
April 21, 2010-Tested Positive
May 26, 2010-CD4-692 (39%) VL 17100. No Meds.
September 8, 2010-CD4-551 (37%) VL 10241 Still no Meds
Found to have resistance to Videx, Rescriptor, Sustiva, Viramune, Viracept.
December 1, 2010-CD4-476 (34%) VL 38000.
December 5, 2010-Started Combivir.
January 13, 2011-No CD4 Count Done. VL 190!!!!!!
January 15, 2011-Started Viread and Intelence
Feb 15, 2011-Undetectable!!!
April 15, 2011-CD4 898 (43.4%) U/D

Online Miss Philicia

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Re: Just got my drug resistance test back
« Reply #5 on: September 08, 2010, 06:27:24 PM »
I am resistant to all NNRTIs except Intelence (etravirine).  I'm also resistant to the PI Viracept (nelfinavir mesylate).  Im just upset because it's something I didnt think about being a problem. 

It's not particularly unusual though, so relax.  You're acting like your resistant to 15 meds, not 3.
"Iíve slept with enough men to know that Iím not gay"

Offline tednlou2

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Re: Just got my drug resistance test back
« Reply #6 on: September 08, 2010, 11:18:35 PM »
I'm resistant to Sustiva and Neviripine, too.  While it is possible I had this from infection, most I've talked to seem to think it probably happened from being given 4 days of Sustiva and then stopped (not my choice).  Sustiva alone had gotten my vl down to UD, so that would mean it was working against my virus, right?  I have been surprised Sustiva alone got my vl to UD.  Like you, I have worried what that means for the long-term.  What if I can't tolerate other regimens for whatever reason?  Everyone says I have plenty of options, so I'm not as worried. 

Question:  Just because a genotype says your virus shows resistance to certain meds, does that mean they wouldn't work at all?  I guess I'm wondering whether they may still work but just not as well--take longer to get UD??  Or, does it mean the test knows those meds just wouldn't work at all?

 

Offline Inchlingblue

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Re: Just got my drug resistance test back
« Reply #7 on: September 09, 2010, 01:03:41 AM »
I'm resistant to Sustiva and Neviripine, too.  While it is possible I had this from infection, most I've talked to seem to think it probably happened from being given 4 days of Sustiva and then stopped (not my choice).  Sustiva alone had gotten my vl down to UD, so that would mean it was working against my virus, right?  I
 

Ted, I thought you said you were given Atripla for 4 days? When you stop Atripla the Sustiva component lasts longer in your body because it has a longer half life than the other two meds. This means that after stopping Atripla the other two wear off first and then you are left with just Sustiva for a few days until it wears off. It's those few days when only Sustiva remains that resistance can occur because the virus is able to mutate around it.

Offline tednlou2

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Re: Just got my drug resistance test back
« Reply #8 on: September 09, 2010, 01:33:41 AM »
Ted, I thought you said you were given Atripla for 4 days? When you stop Atripla the Sustiva component lasts longer in your body because it has a longer half life than the other two meds. This means that after stopping Atripla the other two wear off first and then you are left with just Sustiva for a few days until it wears off. It's those few days when only Sustiva remains that resistance can occur because the virus is able to mutate around it.

I think you must be referring to my thread about whether I should sue the hospital for putting me on an HIV med for 4 days without my knowledge and then stopping it with no plan to continue.  When I wrote that, I don't think I really knew the difference between just Sustiva and Atripla.  I later learned the difference and looked at the med reports.  It was just Sustiva only.  At that time, I changed the incorrect info in my sig line from Atripla to Sustiva.  It was my error that I said Atripla when it was just Sustiva.  After learning this, it made me realize they really didn't know what they were doing.

Offline Inchlingblue

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Re: Just got my drug resistance test back
« Reply #9 on: September 09, 2010, 11:00:08 AM »
I think you must be referring to my thread about whether I should sue the hospital for putting me on an HIV med for 4 days without my knowledge and then stopping it with no plan to continue.  When I wrote that, I don't think I really knew the difference between just Sustiva and Atripla.  I later learned the difference and looked at the med reports.  It was just Sustiva only.  At that time, I changed the incorrect info in my sig line from Atripla to Sustiva.  It was my error that I said Atripla when it was just Sustiva.  After learning this, it made me realize they really didn't know what they were doing.

Wow that's amazing. It was bad enough if they had put you on Atripla for a few days but at least that's a full combo. If they put you on only Sustiva that's clearly malpractice (I'm not a lawyer but it's obvious here).

It is possible for just Sustiva to get the viral load down initially. It will work for a while (not very long) until the virus mutates around it.
« Last Edit: September 09, 2010, 11:02:19 AM by Inchlingblue »

Offline tednlou2

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Re: Just got my drug resistance test back
« Reply #10 on: September 09, 2010, 11:03:31 PM »
Wow that's amazing. It was bad enough if they had put you on Atripla for a few days but at least that's a full combo. If they put you on only Sustiva that's clearly malpractice (I'm not a lawyer but it's obvious here).

It is possible for just Sustiva to get the viral load down initially. It will work for a while (not very long) until the virus mutates around it.

Yeah, I'm still debating whether to sue.  I tried to contact the hospital director to get them to make changes, but they have ignored me.  I think I have 2 years to sue.  I'm still thinking about it.  It isn't about money but to get them to make changes so this doesn't happen again.

Offline vaboi

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Re: Just got my drug resistance test back
« Reply #11 on: September 10, 2010, 12:09:41 AM »
Wow that's amazing. It was bad enough if they had put you on Atripla for a few days but at least that's a full combo. If they put you on only Sustiva that's clearly malpractice (I'm not a lawyer but it's obvious here).

It is possible for just Sustiva to get the viral load down initially. It will work for a while (not very long) until the virus mutates around it.

The problem with Sustiva alone that would concern me the most is that it isn't able to get into the genital tract.  So the virus would continue to breed there and likely other isolated areas in the body even if it were to become undetectable in blood.  That's probably one reason why it doesn't work very long as a monotherapy.  Same with PI's.

Offline natthai

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Re: Just got my drug resistance test back
« Reply #12 on: September 16, 2010, 07:11:45 AM »
I am really worried, I was diagnosed in April of this year and just got back my drug resistance labs.  I am resistant to almost every NNRTI. 

Do you also have Herpes I/II co-infection and have you even treated it with Acyclovir (even once or twice). There is an excellent paper from John Hopkins that describes Acyclovir as "a direct inhibitor of HIV infection". It is a weak ARV in the same class as the drugs that you are resistant to.

"By comparison in our phenotypic assay, it is 50 times less potent than AZT (zidovudine) (IC50 ∼100 nm) and 500 times less potent than 3TC (lamivudine) (IC50 ∼10 nm) (18, 23)."

They describe this drug as a potential treatment which may be able to defer HAART for 2-3 years. The benefit is that Acyclovir is highly viral enzymatic specific (unlike HAART) which means few if any side effects.

HOWEVER they state one important point. Acyclovir is essentially monotherapy. In the research, although they found:

"This report demonstrates that the antiviral drug acyclovir inhibits HIV replication in primary CD4+ lymphoblasts and suggests that acyclovir is directly responsible for the decline in HIV plasma levels in HSV/HIV-coinfected patients"

sound great! However, during the course of their research they found mutations:

"...M184V confers near complete resistance to 3TC (lamivudine) or FTC (emtricitabine), drugs that form the foundation of most HAART regimens (29Ė31). The T69N mutation broadly reduces sensitivity to currently approved nucleoside analogs either by itself or, more significantly, in the context of other thymidine analog mutations (32, 33)."

ouch not so good. I have been considering taking Acyclovir to defer other treatment. At first this research looks very exciting, on second thought not so much. Would anyone recommend starting a suppression therapy with Acyclovir for its HIV benefits?

I am wondering about your situation, have you ever taken Acyclovir for cold sores/herpes outbreaks? They theorize that the reason why Acyclovir was showing resistant mutations is because of the episodic way in which patients take it (i.e. only when they have an outbreak- start and stop treatment).

Can anyone with a genetics/molecular biology background analyze this paper. It is pretty heavy in the genetics.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2581555/
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Inchlingblue

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Re: Just got my drug resistance test back
« Reply #13 on: September 16, 2010, 12:04:06 PM »
There have been several threads on here about using acyclovir (or Valtrex) for not only herpes but also to delay starting HIV meds. If you do a search they should come up.

Here is an interesting Q&A from Dr. Gallant about the mutation. He basically says it's not a problem. But he thinks its best to just start HIV meds.

LINK:

http://www.hopkins-aids.edu/q_a/patient/opportunistic_infections/viral_infections__including_herpes__shingles_and_cmv_/anti-hiv_activity_and_resistance_with_acyclovir.html?contentInstanceId=472129
« Last Edit: September 16, 2010, 01:39:05 PM by Inchlingblue »

Offline natthai

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Re: Just got my drug resistance test back
« Reply #14 on: September 16, 2010, 01:21:16 PM »
There have ben several threads on here about using acyclovir (or Valtrex) for not only herpes but also to delay starting HIV meds. If you do a search they should come up.

Here is an interesting Q&A from Dr. Gallant about the mutation. He basically says it's not a problem. But he thinks its best to just start HIV meds.

LINK:

http://www.hopkins-aids.edu/q_a/patient/opportunistic_infections/viral_infections__including_herpes__shingles_and_cmv_/anti-hiv_activity_and_resistance_with_acyclovir.html?contentInstanceId=472129

Thank you so much. This was extremely helpful!
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

 


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