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Author Topic: Poll: Meds you've taken and side effects you've had with them?  (Read 16687 times)

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Offline odyssey

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  • Mutiny of the neurons!
Poll: Meds you've taken and side effects you've had with them?
« on: October 16, 2010, 08:04:30 pm »
I'm probably at the point where I'll be starting meds again fairly soon, after a break of over 6 months. I previously was taking Truvada/Reyetaz/Norvir. I suffer from mental health issues and Asperger's Syndrome, so am very sensitive to anything that can upset my emotional/mental balance. So, in hopes of finding out what might be good options for me coming up, I'm hoping to do a poll.

I'd like to know what different medicines people have been on and what side effects they have caused, especially side effects such as depression, anxiety, and severe fatigue. I'd love to get as many responses as possible. Your help in this matter is greatly appreciated!

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Hellraiser

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #1 on: October 16, 2010, 08:07:14 pm »
Atripla, first few months were a little rough, now I get no side effects whatsoever.

Offline next2u

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #2 on: October 16, 2010, 08:25:04 pm »
im on atripla. been on it 5 weeks now. no side effects after the first night. wait, had my first atripla dream recently and some mornings are a little more lively but nothing close to the shit that would happen after a night out with my best friend (that was toxic, lol). the dream had a hell of an emotional impact but was no more vivid or lucid than the rest. i consider myself lucky. knock on my wood?
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5
sept14 cd4 990; vl ud; cd4% *
jun15 cd4 1152; vl ud; cd4% *
july15 - STRIBILD
oct15 cd4 583; vl 146; cd4% 42
mar16 cd4 860; vl 20; 44

Offline pozoz

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #3 on: October 16, 2010, 09:48:54 pm »
Truvada/Reyetaz/Norvir-

GI Issues mainly- Loose stools, Runs, about half the time. (Norvir?)

Yellow eyes initially, eased off after about the first month. (Elevated Billirubin?, Reyataz?))

Some mild fatigue, unsure if related to meds.(Truvada?)

Waking up to pee at night initially, eased also after about the first month (kidney stress from Reyataz?)

All good now, still a few GI issues but pretty much used to it now.

Tried supplements (Multi Vitamin/Mineral, and a Fiber supplement,but no change.

Bloods in 2 days, hopefully UD!!!

Cheers....
Seroconverted Aug 2008
Tested Pos      May 2009
Verimune XR / Descovy
 576  34%. U/D

Granny60

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Offline Nashvegas

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #5 on: October 18, 2010, 04:59:39 pm »
Viramune plus Truvada for 2 years now.  No negative side effects at all, even the first couple of weeks.  Been a great combo for me....
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline eric48

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #6 on: October 18, 2010, 05:29:07 pm »
Viramune plus Truvada .... would be a nice choice is concerned with psycho effects. May be, also, Isentress and Truvada which lots of people seem to find easy to take.

Efavirenz (found in Atripla) seems to be the one with most mental side effects (of course, not in everyone...). Me,I am on Viramune and Kivexa 4 months. No complaints (now...)

I hope this time you can stay on meds. It is important to remain under treatment

Good Luck. Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline denb45

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #7 on: October 18, 2010, 05:38:50 pm »
Truvada/Reyetaz/Norvir-

GI Issues , Gas Bloating, Pain Chronic Diarrhea, tried all of the things that are suppose to help, but, I wasn't ever successful, now I just live with this, it's a big part of my disability, Reduced kidney functions @ 58% Chronic Kidney Disease, high CKPs was put on low-sodium diet or no salt diet, and lots of night time peeing, along w/ painful kidney stones, and urinary tract infections  ??? not saying any of these things will happen to you, but, I guess I was just UNLUCKY  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Granny60

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #8 on: October 18, 2010, 06:07:15 pm »
Atripla> Kidney failure
Husband Atripla> Gets Really drunk sometimes.   Nightmares finally started a few months ago

Food for thought.  Does anyone think there is a co-relation between HIV genotype/mutations and the effects that a particular med has on the body? 

Offline Hellraiser

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #9 on: October 18, 2010, 07:37:02 pm »
Atripla> Kidney failure
Husband Atripla> Gets Really drunk sometimes.   Nightmares finally started a few months ago

Food for thought.  Does anyone think there is a co-relation between HIV genotype/mutations and the effects that a particular med has on the body? 

Nah, I'm pretty sure the pharmacokinetics of any drug is unique to each individual regardless of virus or mutation.  Your body is a giant chemical factory that functions a little bit differently from person to person.  Introducing a new drug is going to have different effects on the chemicals that are already present.

Offline eric48

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #10 on: October 19, 2010, 09:39:53 am »
Does anyone think there is a correlation between HIV genotype/mutations and the effects that a particular med has on the body? 

Nope, and actually, once you are UD, VL is lower than 50, and, in most people, it actually lower than 1 ... And at that level, there is now evidence that there is no such thing as virus replication.

Virus stays latent in reservoirs and that's it. VL at 1 means there are less than 5000 copies running errant in the 5 or so liters of blood, in other words: peanuts;

BUT, the genetics of the PERSON has a relation with some effects of some meds, which is why one needs to pass a genetic test (of the person, not of the virus) in order to screen out potential hypersensitivity to Abacavir. A similar situation may have been identified for Viramune (ongoing research). Other health conditions such as drinking/smoking/VHC, etc. may also contribute to SE.

This is why it is worth spending some time with doc to explain your past/current health to help identify the meds that will minimize the potential for SE.

Cheers! Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline odyssey

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  • Mutiny of the neurons!
Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #11 on: October 20, 2010, 07:09:04 pm »
Nope, and actually, once you are UD, VL is lower than 50, and, in most people, it actually lower than 1 ... And at that level, there is now evidence that there is no such thing as virus replication.

Virus stays latent in reservoirs and that's it. VL at 1 means there are less than 5000 copies running errant in the 5 or so liters of blood, in other words: peanuts;

BUT, the genetics of the PERSON has a relation with some effects of some meds, which is why one needs to pass a genetic test (of the person, not of the virus) in order to screen out potential hypersensitivity to Abacavir. A similar situation may have been identified for Viramune (ongoing research). Other health conditions such as drinking/smoking/VHC, etc. may also contribute to SE.

This is why it is worth spending some time with doc to explain your past/current health to help identify the meds that will minimize the potential for SE.

Cheers! Eric

Do you mind sharing the research that shows that undetectable below 50 usually equates to 1 copy per milliliter? Because the way I see it, if they can't measure anything below 50 copies, how would they know this? Where is the science behind your claim?
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline aztecan

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  • 36 years positive, 64 years a pain in the butt
Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #12 on: October 21, 2010, 12:23:00 am »
I have been on meds for more than 14 years. I am not going to list a litany of my aches and pains, especially since most of you are never going to take the meds I took back in 96 anyway,

I would question a statement Eric made though.

Nope, and actually, once you are UD, VL is lower than 50, and, in most people, it actually lower than 1 ... And at that level, there is now evidence that there is no such thing as virus replication.

Virus stays latent in reservoirs and that's it. VL at 1 means there are less than 5000 copies running errant in the 5 or so liters of blood, in other words: peanuts;
Cheers! Eric

The viral load test we use can measure as few as 48 viral copies in a cu/ml of blood.  There are others which are even more sensitive, to a level of 20 or 25, I believe.

But I have never heard of a test, nor seen any proof, that anyone has dropped to a viral load of one.

I also would like to know where you found the information regarding having only 5,000 copies in the entire bloodstream once you are undetectable.

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

Offline eric48

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #13 on: October 21, 2010, 05:38:04 pm »
Hi,

I humbly accept the scepticism about what I have written. Simply because it is backed up by most authoritative article (free and recent) by Dr Siliciano.

http://www.iasusa.org/pub/topics/2010/issue3/104.pdf

I was highly surprised and elated from the reading(s) of it. I had to read it several times... Every single word is so meaningful. And means so much to us who are trying to make sense out of this complicated issue.

I am not making things up. I put in perspective that 1 copy per mL in a body that has an average 5 Liters of bloods makes 5000 free flowing copies in the blood (please kindly bear in mind that
- CD4 in peripheral blood make up only 5 % of total CD4s, so in that respect my computation correct as it refers to peripheral blood, not to the entire body
- virus copies that reside in a living cell are not counted in VL since VL is only about free flowing copies , pretty much like electricity is transmitted by FREE electrons , not all electrons)
)

that being said, let me quote the above article:

... All treated patients with full suppression have a steady state viremia below 50 copies/ml typically around 1 copy/ml ...

I was utterly surprised my self! (and obviously not making things up...)

the background is that 'clinical' (read: commercially available) assays have a detection limit of 50 (typically).
Using replication techniques that are time consuming and costly, researchers can go below... (Dr Siliciano works at J Hopkins, etc...)

1 copy/ml is the detection limit of the most advanced tool they have. Some people may actually be below that!

On the lowdown, please bear in mind that CD4 (and blood) are not the only hosts for our beloved retrovirus. (see semen, brains, etc...)

But still. the above work by Siliciano (and until further research proves otherwise) and its take home lesson is crystal clear:

For some body who is UD, there is NO such thing as viral replication and most importantly NO virus MUTATION.

Once you are adherent to a potent regimen: NOTHING (repeat NOTHING) bad can happen

you (retro) virus is like the Bin Laden guy. It is so much under repressive pressure that, even though not eradicated, it can not do any (virologic) harm.

This work by Siliciano is not actually extremely new, there is a powerpoint presentation that dates from 2008.

www.aids2008.org/Pag/ppt/WEPL0101.ppt

The article goes a little further...

(and, of course, if I have been over interpreting it, please kindly accept my apologies, because that is not my intend)

Cheers

Eric
 


NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline odyssey

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  • Mutiny of the neurons!
Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #14 on: October 21, 2010, 06:38:00 pm »
But still. the above work by Siliciano (and until further research proves otherwise) and its take home lesson is crystal clear:

For some body who is UD, there is NO such thing as viral replication and most importantly NO virus MUTATION.

Once you are adherent to a potent regimen: NOTHING (repeat NOTHING) bad can happen

you (retro) virus is like the Bin Laden guy. It is so much under repressive pressure that, even though not eradicated, it can not do any (virologic) harm.

Cheers

Eric
 

I hate to be the spoiler of bad news, but I think it is far too soon to celebrate. In the field of HIV/AIDS medicine, one study does not a rule make. It takes numerous examples of research supporting a theory or concept for it to be considered proven, just like in any good science. I'll believe it when it is backed up by further research. Methinks you shouldn't be saying "until other research disproves it we should believe it" but rather "we can be optimistic, but should wait for further research to believe it."

Expecting miracles gets us nowhere, being realistic is the key. Following scientific protocol of making a study repeatable and then doing so to prove it's results is the key that keep us separate from pseudo-scientists.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline mecch

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #15 on: October 21, 2010, 06:57:40 pm »
I thought it was accepted that effective HAART means undetectable which means no replication.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline odyssey

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #16 on: October 21, 2010, 07:38:49 pm »
Actually, mecch, UD does not mean replication stops. Low level replication continues despite UD VL.

In the setting of highly active antiretroviral therapy (HAART), plasma levels of human immunodeficiency type-1 (HIV-1) rapidly decay to below the limit of detection of standard clinical assays. However, reactivation of remaining latently infected memory CD4+ T cells is a source of continued virus production, forcing patients to remain on HAART despite clinically undetectable viral loads.
http://www.ncbi.nlm.nih.gov/pubmed/18171475

In summary, this study shows that residual viral replication in peripheral blood still occurs in the majority of patients with undetectable plasma viral load.
http://www.ncbi.nlm.nih.gov/pubmed/17705170

The origin of the rebounding virus is unknown, but is thought to result from continuing viral replication in anatomic or cellular compartments
http://www.ncbi.nlm.nih.gov/pubmed/12941414

This is just a sampling. Feel free to do research for yourself. The low level replication is one reason why VL rebounds when you stop meds.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline mecch

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #17 on: October 21, 2010, 07:51:06 pm »
I though viable virus is released but blocked by HAART in the blood stream. Thus its semantic. Except there is no chance of resistance. So "replication" is a non issue in adherent HIV+ treated people.
My ID said that small changes in undetectable viral loads are due to "unviable" virus, not viable virus. "Dead" on arrival.
I guess I dont delve too deeply into these finer distinctions.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline HowYouDoin

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #18 on: October 22, 2010, 08:44:03 am »
Isentress/Truvada

Gassy, fart alot. stay away from broccoli.

Offline eric48

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #19 on: October 22, 2010, 04:38:49 pm »
Hi,

Since I have just received some bad news on antother front, I may not be able to provide much to this discussion.

Nonetheless, I agree that theories and concepts evolve, change, etc.

Odyssey quotes 3 articles one from 2003, and one from 2007 and one from 2008 

quoting this article:

http://www.ncbi.nlm.nih.gov/pubmed/18171475

and saying that (I quote Odyssey) : In summary, this study shows that residual viral replication in peripheral blood still occurs in the majority of patients with undetectable plasma viral load

is a fairly accurate quotation from the original article since the abstract says (I copy and paste):

The most likely potential mechanisms are low-level viral replication and the intrinsic stability of latently infected cells.

And this is where it becomes interesting (in the view of the history of an evolving science)

because this above article is published in 2008 by no one else that Dr Siliciano himself

In his article,

http://www.iasusa.org/pub/topics/2010/issue3/104.pdf

which I quoted earlier, and dates Sept 2010, Dr Siliciano explains that one POTENTIAL mechanisms could be low-level viral replication and that the aim of his work is to explore this hypothesis, figure a way to challenge it

and he, himself, comes to the conclusion that this hypothesis is (based on his current work and thinking) WRONG (or of negligible effect).

So it is not about one study that contradicts an other, which contradicts another until the screening process of advancing science sorts things out, etc.

It is about one reputated scientist who, in 2008, came up with 2 potential causes for residual VL , blips, etc. for people who are UDs and adherent to a regimen that works
Then keeps working on these 2 hypothesis and came to the conclusion that 1 (residual reservoirs) is much stronger than the other (residual replication)

OF course, residual replication may exist, but, under potent meds, it is stamped down before it has a chance to infect new cells and most importantly, if it occurs, or as it occurs, it is in so few occurrences that mutations (that require millions of replications before occurring)
do not occur.

So Odyssey is right as of 2008 science, Mecch is right as to 2010 science

As a side note, stating that 'The low level replication is one reason why VL rebounds when you stop meds', is obviously correct.

My stating that : there is NO such thing as viral replication, may have been a bit overboard.

I might rather have said that the extent of viral replication is so low that no mutation should be expected from that process.

in my opinion, the take home lesson is that UDs adherent to a potent regimen (of recent times) are safe from mutation.

My question is : would that mean that ALL treatment failures (for people who have been UD for a while under potent, current meds) come from other causes (side effects, non adherence, etc ?)

At this point, I do not personally mind so much, because the bad news is that I am still not UD ... (VL at 200 at week 19 ...) and THAT is depressing...

Eric



 

 
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline aztecan

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #20 on: October 24, 2010, 02:09:36 am »
Hi,
in my opinion, the take home lesson is that UDs adherent to a potent regimen (of recent times) are safe from mutation.

My question is : would that mean that ALL treatment failures (for people who have been UD for a while under potent, current meds) come from other causes (side effects, non adherence, etc ?)

At this point, I do not personally mind so much, because the bad news is that I am still not UD ... (VL at 200 at week 19 ...) and THAT is depressing...

Eric

Hey Eric,

While I understand your train of thought, which would logically lead you to believe your above-stated opinion, it doesn't always pan out in real life.

I have seen people develop resistance to meds even when they were adherent. It is possible there was an underlying and unknown resistance prior to starting meds, or some other factors may be involved.

Mind you, those who I knew who experience this may never have had a GART done, because, like me, the resistance test didn't exist when we started meds.

I am sorry to hear you have yet to reach undetectable. Sometimes it takes longer for some people. I know some people who have never reached undetectable, and nobody has an explanation as to why.

I hope your results improve soon.

HUGS,

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

Granny60

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #21 on: October 24, 2010, 12:20:18 pm »

Hey Eric,

While I understand your train of thought, which would logically lead you to believe your above-stated opinion, it doesn't always pan out in real life.

I have seen people develop resistance to meds even when they were adherent. It is possible there was an underlying and unknown resistance prior to starting meds, or some other factors may be involved.

Mind you, those who I knew who experience this may never have had a GART done, because, like me, the resistance test didn't exist when we started meds.

I am sorry to hear you have yet to reach undetectable. Sometimes it takes longer for some people. I know some people who have never reached undetectable, and nobody has an explanation as to why.

I hope your results improve soon.

HUGS,

Mark


Good explanation Mark. I tend to theorize that since everyone had a latent reservoir of virus, that restistance evolves from those latent virus in these people. HIV is the king of mutants when it comes to mutating.

Offline eric48

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #22 on: October 24, 2010, 06:34:46 pm »

.... it doesn't always pan out in real life....



Hi Guys,

This is exactly what I appreciate in your posts and this forum in general. It adds patent's perspective to the
medical academia's views. We are not stats we are individuals.

In a rare twist of history one of my family members invited me to an open doors at our local NIH equivalent as part of a fund raiser. (that side of our family runs a foundation that donates a lot to cancer research)
visitors were randomly directed to various labs and the lab tech/manager gave presentation about what they do.

The most unexpected thing of all is that, by the most unexpected chance, I was assigned to visit the very lab and receive explanations from the very same person that has signed off my genotype tests!...

That was emotionally hot. (one girl actually fainted during one of the conferences...). I, myself, was very unprepared too...

I've just got to see with my own eyes the very people who are doing this research here, in their working environment. 

Actually a genotype test seems to be very labor intensive... And the equipment they use seems so basic (and ancient...) so much different than the luxury labs of big pharma.

there was a hands on on gel electrophoresis as part of the open doors (on a colorant not a real sample) and I volunteered.

That was so unexpected ! (and cool!)

Back to the above article I had mentioned, potency index that is discussed sheds some light on why some of the earlier meds were not potent enough.
(which is why I have carefully referred to UDs under modern, successfull HAART)

the last few days have been a real emotional roller coaster.

It is comforting to be back home and read your posts

Thanks again Eric
« Last Edit: October 24, 2010, 06:47:04 pm by eric48 »
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline odyssey

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #23 on: October 24, 2010, 10:40:59 pm »
Okay, I really hate to spoil the fun, but will everyone please quit hijacking my thread and please stick to the topic of personal experiences I mentioned asking for in my original post? Thanks a million!

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline aztecan

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #24 on: October 25, 2010, 12:47:13 am »
I'd like to know what different medicines people have been on and what side effects they have caused, especially side effects such as depression, anxiety, and severe fatigue. I'd love to get as many responses as possible. Your help in this matter is greatly appreciated!

odyssey

OK, back on topic then.

Sustiva was the only drug I took that I had any negative CNS side effects.

Mine were so severe, including panic attacks and hallucianations, that I quit the stuff after two months and switched to the Reyataz/Norvir/Truvada you used to take.

Hope that helps.

HUGS,

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

Offline LordBerners

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #25 on: October 25, 2010, 06:33:02 am »
Started out on Sustiva/Truvada, had fairly pronounced dizzy-ness for a few hours after taking, but nothing I considered intolerable.  Ended up resistant to that due to doctor's error combining with tuberculosis medicine.

Now on Reyetaz/Norvir, Abacavir, Tenofovir, with no side effects other than very rarely extremely mild stomach upset and a little gas.  Very minimal though. 

In both cases all my kidney/liver/cholesterol/etc. tests were perfect.
Please, just call me Berners.. or Baron.

Offline wtfimpoz

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #26 on: October 25, 2010, 09:32:22 pm »
Atripla, which is Sustiva and Truvada.  Side effects were horiffic mood swings, including a marathon six hour crying jag my first day on treatment and dizziness so severe I almost wrecked my car a few times.  I couldn't remember where I was or what I was doing.  A fairly typical scenario would include me going to the 'fridge to grab a snack, forgetting that I went for the snack and leaving it on the table, returning to the kitchen to discover the snack a few hours later and attempting to put it back in the fridge only to forget to close the door.  I couldn't recite number sequences in proper order and would forget certain terms.  I forgot a number of passwords at work, and don't know if I ever would have remembered them if someone hadn't looked them up for me.  The worst of the dizziness was gone within the first two weeks, the confusion mostly disappeared after four weeks and the mood swings have dissipated to a manageable level.  I have a storied family history of psychiatric disorders and have engaged in some substance abuse, so I think my CNS reaction may have been more pronounced than many experience. 

I'm almost two months into use and my worst side effects are insomnia and a persistent feeling of slight confusion which might be in my head or related to the insomnia.  I can only sleep with the assistance of a low-dose of ambien, which I intend to kick during my next vacation.  I do still have difficulty recalling large number sequences but haven't forgotten any passwords, terms or things necessary for basic functioning.  I feel that every week I tolerate the side effects better than the last, but I worry that its not going to get better than this as I'm currently past the "2-8 week" timeframe that is given for Atripla's side effects to subside.  On the bright side, my "vivid dreams" have consisted of an eight hour sim-city binge and an erotic dream that was beyond anything I'll ever have in real life.  My doc has a hardon for Atripla, so I may have to change to get off the stuff.   
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline spoon

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #27 on: October 27, 2010, 01:13:46 pm »
Four months into being on Atripla as my first treatment and I've developed facial wasting. I'm switching off of it tomorrow when I see my doctor. Apparently Sustiva (a component of Atripla) is one of the three drugs now associated with lipoatrophy. I wish someone had told me before I started it. It took a lot of digging around with Google to unearth some pretty damning studies.

Offline Miss Philicia

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #28 on: October 27, 2010, 01:26:33 pm »
Four months into being on Atripla as my first treatment and I've developed facial wasting. I'm switching off of it tomorrow when I see my doctor. Apparently Sustiva (a component of Atripla) is one of the three drugs now associated with lipoatrophy. I wish someone had told me before I started it. It took a lot of digging around with Google to unearth some pretty damning studies.

http://forums.poz.com/index.php?topic=29980.msg435931#msg435931
"I’ve slept with enough men to know that I’m not gay"

Offline ElZorro

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #29 on: October 27, 2010, 06:35:29 pm »
Four months into being on Atripla as my first treatment and I've developed facial wasting. I'm switching off of it tomorrow when I see my doctor. Apparently Sustiva (a component of Atripla) is one of the three drugs now associated with lipoatrophy. I wish someone had told me before I started it. It took a lot of digging around with Google to unearth some pretty damning studies.

Spoon -

Care to share any of the "damning studies" that you unearthed?

Offline spoon

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #30 on: October 27, 2010, 07:14:49 pm »
reposted below with more links.
« Last Edit: October 27, 2010, 07:35:17 pm by spoon »

Offline ElZorro

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #31 on: October 27, 2010, 07:23:05 pm »
Thanks!

Offline spoon

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #32 on: October 27, 2010, 07:34:46 pm »
here are a few links with selected passages. as someone who was new to hiv and looking on these boards for information, and hearing everyone say how safe the new drugs are and how there is almost on lipo risk, i think it's important to share with other new people researching on here that there are indeed lipo risks associated with Atripla (which contains efavirenz). the last link mentions a study saying 11% of treatment naive patients taking Sustiva experience lipo issues:

http://www.catie.ca/facts.nsf/ef0b8c264397949f852571700053e30c/611b31cdf885ba368525678c005ba930!OpenDocument

In 2007 two clinical trials in the U.S. suggested that the use of efavirenz is associated with a significantly increased risk for changes in body shape. Efavirenz use is also linked to an increased level of cholesterol in the blood. These changes are part of a larger set of changes known as the lipodystrophy syndrome.

http://www.catie.ca/tu.nsf/acdff2c60dab4741852571b60051c9fe/af34f3dfeffe2cbe852572ac005dc36f!OpenDocument

An unexpected result
At the 14th CROI, an unexpected development occurred. Results from two long-term clinical trials suggest that exposure to the non-nuke efavirenz can increase the risk of lipoatrophy.
The fact that two separate studies, one of which was relatively large, have found this result is disturbing and suggests that the relationship between efavirenz and fat wasting is not a statistical error or related to a fluke. Details about these studies as well as possible reasons that efavirenz might affect the health of fat cells appear later in this issue of TreatmentUpdate.


http://www.wellsphere.com/hiv-aids-article/an-interview-with-nelson-vergel-impact-of-lipodystrophy-on-the-quality-of-life-and-self-esteem-of-people-living-with-hiv/661814

So yes, your chances of experiencing lipoatrophy are going to be lower, but I'm still hearing from recently diagnosed people taking Atripla [efavirenz/tenofovir/FTC], or a very, very lipid-friendly combination, that are experiencing body changes.

A study done by the ACTG [AIDS Clinical Trials Group] actually showed that 11 percent of people taking tenofovir, 3TC [Epivir, lamivudine] and Sustiva [efavirenz, Stocrin] experience lipoatrophy. That's 11 percent of people who have never been exposed to AZT or d4T, so there is a minority of patients that may have lipoatrophy even though they have never been exposed to the main culprits of this problem.

Offline phildinftlaudy

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #33 on: October 27, 2010, 08:05:26 pm »
here are a few links with selected passages. as someone who was new to hiv and looking on these boards for information, and hearing everyone say how safe the new drugs are and how there is almost no lipo risk, i think it's important to share with other new people researching on here that there are indeed lipo risks associated with Atripla (which contains efavirenz). the last link mentions a study saying 11% (so, the reverse would be true as well - 89% of treatment naive patients taking Sustiva experience NO lipo issues) of treatment naive patients taking Sustiva experience lipo issues:

In 2007 two clinical trials in the U.S. suggested that the use of efavirenz is associated with a significantly increased risk for changes in body shape. Efavirenz use is also linked to an increased level of cholesterol in the blood. These changes are part of a larger set of changes known as the lipodystrophy syndrome.

An unexpected result
At the 14th CROI, an unexpected development occurred. Results from two long-term clinical trials suggest [/b]that exposure to the non-nuke efavirenz can increase the risk of lipoatrophy.
The fact that two separate studies, one of which was relatively large, have found this result is disturbing and suggests that the relationship between efavirenz and fat wasting is not a statistical error or related to a fluke. Details about these studies as well as possible reasons that efavirenz might affect the health of fat cells appear later in this issue of TreatmentUpdate.


 percent of people who have never been exposed to AZT or d4T, so there is a minority of patients [/b]that may have lipoatrophy even though they have never been exposed to the main culprits of this problem.
Funny how adding bold and underlines can make the reality of the risk easier to identify - over a year on Atripla and NO lipo, no high cholesterol (I guess I am in the 89, yes 89% - pretty significant number - who don't experience this)
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Tim Horn

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #34 on: October 27, 2010, 08:37:57 pm »
Hi Spoon:

I do think it's important to take the two studies you cite with a grain of salt.

In summary, two sets of preliminary data were reported at the 14th CROI in 2007: a 155-patient study conducted in Ottawa, Madrid and Macon (GA) and presented by D. William Cameron and a 753-patient multi-center ACTG study presented by Richard Haubrich.

A key issue to consider with the first study was that everyone was randomized to receive either Kaletra or Sustiva plus Combivir. Even though there was a statistically significant difference in the rate of lipoatrophy between those receiving Sustiva (34 percent) vs. those receiving Kaletra (5 percent), it's important to note one of the major agents in Combivir: zidovudine (AZT), a nucleoside analogue that has been clearly linked to mitochondrial damage and, with it, lipoatrophy. And the way in which this rather small study was conducted, the only conclusion we can reach is that Sustiva plus Combivir was more likely to cause lipoatrophy than Kaletra plus Combivir -- two regimens that are rarely prescribed any more.

The second study also found that, across the board, those taking Sustiva were more likely than those taking Kaletra to develop lipoatrophy. Keep in mind, this study had a very large number of people using these drugs with either Combivir or Zerit plus Epivir.  And when we look specifically at those using Sustiva plus Viread compared with those using Kaletra plus Viread, the differences between the two groups weren't nearly as significant as they were when other NRTIs were used: 3/50 (6 percent) of those receiving Kaletra plus Viread experienced lipoatrophy, compared with 8/67 (12 percent) of those receiving Sustiva plus Viread.

And consider the following conclusion, offered up by the study investigators, of the final data reported in June 2009 in AIDS:

Quote
This study provides important new information for clinicians and patients on the relative risk and benefits of available antiretroviral regimens for initial therapy of HIV-1 infection. The risk of lipoatrophy can be minimized with a NRTI-sparing regimen or one containing tenofovir and lamivudine as the NRTI component. Although lipoatrophy was infrequent on lopinavir/r plus efavirenz, this combination was suboptimal because of greater increases in triglycerides and use of lipid-lowering agents, and more frequent selection of efavirenz resistance. Unexpectedly, lipoatrophy was less common with lopinavir/r than efavirenz regimens containing zidovudine or stavudine, but cholesterol increases were similar and triglyceride increases were greater with lopinavir/r. These findings re-affirm the central role of tenofovir as a component of NRTI-containing regimens for initial therapy and question the use of stavudine or zidovudine in combination with lamivudine and an NNRTI, which are among the most commonly used regimens worldwide.

I wish we had more data exploring potential links between the use of Sustiva (or Atripla) and the risk of lipoatrophy, but we don't -- nor have any any modern-day studies comparing Atripla to other first-line regimens, such as Isentress or Norvir/Reyataz combined with Truvada, reported higher rates of lipoatrophy among those receiving Atripla. All we really have are these two studies, reported in 2007, to go on.

I can't recall many personal tales of people experiencing lipoatrophy while using Atripla in these Forums and, speaking for myself -- someone who has been on Atripla since it was approved in 2006 and, before that, Sustiva plus Truvada -- and can say that I haven't experienced any subcutaneous fat loss whatsoever.

All of this said, nobody's going to hold your feet to the Atripla fire -- if you're really not keen on a Sustiva-based regimen, that's fine... there are other fine regimens out there. The one thing I will say in Atripla's defense, however, is that if there's any one first-line regimen that's withstood the test of time, in terms of both safety and efficacy, it is Atripla.

Best of luck,

Tim

« Last Edit: October 27, 2010, 08:47:28 pm by Tim Horn »

Offline ElZorro

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #35 on: October 27, 2010, 08:51:32 pm »
The one thing I will say in Atripla's defense, however, is that if there's any one first-line regimen that's withstood the test of time, in terms of both safety and efficacy, it is Atripla.

Tim

Do you have any references relative to the safety & efficacy of Truvada + Issentress "over time"? I just switched to that (and I know a lot of members here are on it). With respect to longevity, how far behind Atripla is that data?

Offline Tim Horn

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #36 on: October 27, 2010, 09:18:57 pm »
ElZorro:

I'm only aware of 96-week data from Merck's STARTMRK study, comparing Isentress/Truvada to Sustiva/Truvada. In short, after 96 weeks, rates of HIV-RNA levels below 50 were 82 percent and 78 percent, respectively. Rates of bona fide virologic failure were 9 percent and 10 percent, respectively.

Rates of treatment-related adverse events remained significantly lower in the Isentress group compared with the Sustiva group, but this isn't surprising -- the greatest differences involved central nervous system and skin side effects, which are well-known adverse effects of Sustiva.

I imagine that we'll be seeing 144-week data at some point soon.

Tim

Offline ElZorro

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #37 on: October 27, 2010, 09:22:57 pm »
Thanks for the data, Tim!

Offline ElZorro

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Re: Poll: Meds you've taken and side effects you've had with them?
« Reply #38 on: October 30, 2010, 01:27:32 am »
SAN FRANCISCO, CA, U.S.A., 18 February 2010 – New data presented today at the Conference on Retroviruses and Opportunistic Infections (CROI) showed 'Isentress'® (raltegravir), an integrase inhibitor for HIV-1 from MSD, was as effective as efavirenz at maintaining viral load suppression to undetectable levels1 and improving CD4 cell counts in previously untreated (treatment-naïve), HIV-1- infected, adult patients through 192 weeks in an ongoing Phase II study.

In an analysis of metabolic profiles and body composition changes from a separate ongoing Phase III study (STARTMRK), raltegravir in combination therapy showed less impact on lipids [total, low-density lipoprotein (LDL), high-density lipoprotein (HDL) cholesterol and triglycerides] than patients receiving efavirenz at Week 96. 2 Changes in body composition as assessed by DEXA scanning showed minimal gains in body fat for either treatment groups.2 Raltegravir in combination therapy also showed less impact on glucose than efavirenz, although this was not a pre-defined analysis.
Phase II study results in treatment-naïve patients through 192-weeks

http://www.pharmiweb.com/pressreleases/pressrel.asp?ROW_ID=16629

 


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