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Author Topic: Conflicting information on PEP  (Read 3593 times)

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Offline DomNYC

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Conflicting information on PEP
« on: September 04, 2008, 10:06:46 AM »
Hello,  I had a potential exposure in August and was put on a course of combovir/viread for 28 days.  I have been in panic mode since this happened so obviously it hasnt been easy and Im praying Ill be ok and this nightmare will be over as soon as possible. I have seen conflicting information on the web regarding PEP and the window period.  Someone at the CDC hotline and my doctor (who is reputable and works with HIV patients here in NYC) told me that PEP does NOT delay the window period -- in other words, the window period doesnt start at the time you complete your course, but rather it is the same timeframe for someone who isnt on PEP --  IE, from the point of the potential exposure.  I have read otherwise here and at a couple of other places, so I was hoping to come up with an answer and clear things up.  I also read through the CDC guidelines for PEP administration and follow up, and it doesnt mention anything about an extended window period.  Given how conservative the CDC is, wouldnt they spell that out??  It would mean alot if anyone could help me figure this out. Thanks in advance...

Offline jkinatl2

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Re: Conflicting information on PEP
« Reply #1 on: September 04, 2008, 10:44:28 AM »
Honestly, we have long been saying that PEP delays the window period by a month as you noted. If there is new scientific data which suggests otherwise, I will certainly try to unearth it later today.

The good news is that, if initiated within the appropriate time (ideally 12-24 hours after the event) PEP seems to be extraordinarily effective at preventing HIV infection. The science there is, in humans, speculative of course, as it does attempt to prove a nagative. But this corresponds with petri and S/HIV tests in primates.

I will jump on this later on in the day :). Needless to say, you are on the right course, whether the testing window for you is three months or four. I fully expect you to come out negative.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline DomNYC

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Re: Conflicting information on PEP
« Reply #2 on: September 04, 2008, 11:17:46 AM »
Thanks so much for your quick response and for looking into this.  I myself have tried and havent found any studies concering PEP window periods  ... Its just so deflating because I did test neg after a pcr/rna and ELISA test at 13th day post incident, and it seems those tests were useless to take... Im schedueled for an antibody test at 5 weeks out, and now it would seem that test wont mean much either..  ??? Thanks again for looking into this and your encouragement..

Offline jkinatl2

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Re: Conflicting information on PEP
« Reply #3 on: September 04, 2008, 09:16:05 PM »
OK, I found an article that does directly address your issue. And good news, it is footnoted with first-tiered peer-reviewed data.

That bad news is that it is almost ten years old, and I have not found more current models since. Of course, human testing of such a hypothesis would be fairly unethical, so as far as I know, we are still dealing primarily with Macaque tests and lab results. Extrapolating into human experiences (and almost all studies are specific to occupational exposure) is highly inaccurate,  as it relies on patient report (anecdote).

But here's the gist of what I found, and the site from whence I steal it.

Quote
Experiments with macaques have been undertaken to further evaluate nonoccupational PEP (summarized in Morbidity and Mortality Weekly Reports[1]). Macaques treated with zidovudine after exposure to SIV were not protected from infection, but the onset of viremia was delayed. Macaques treated with stavudine after exposure to HIV-2 were not protected from infection, but viremia was delayed and the blood viral burden was reduced. Conversely, macaques treated with the antiviral (R)-9-(2-phosphoronylmethoxypropyl)adenine (PMPA) or 2,3-dideoxy-3-hydroxymethyl cytidine (BEA-005) shortly after IV or mucosal exposure to SIV were protected from infection. These results support further exploration of PEP for high-risk nonoccupational exposure to HIV, and suggest that the antiviral drugs employed might alter the natural history of the disease in those who acquire HIV infection.

However, the lack of efficacy data on PEP in humans, offset by the cost and toxicity of available agents, led the CDC to defer recommendations for usage of nonoccupational PEP, although guidance on the management of such scenarios has been issued.[2]

Quote
References

   1. Centers for Disease Control and Prevention. Public Health Service Guidelines for the Management of Health-Care Worker Exposures to HIV and Recommendations for Postexposure Prophylaxis. MMWR Morb Mortal Wkly Rep. 1998;47(RR07):1-33.

   2. Centers for Disease Control and Prevention. Management of possible sexual, injecting-drug-use, or other nonoccupational exposure to HIV, including considerations related to antiretroviral therapy. MMWR Morb Mortal Wkly Rep. 1998;47(RR17):1-14.

link:

http://www.medscape.com/viewarticle/413308


If you find anything more current please let me know. An AEGIS search was not particularly helpful, except the information out there tells me that occupational exposure (needle sticks and the like) seem to have a very different infectious process than sexual transmission, and react differently to PEP.

However, I'd like to err on the safe side and tack on the extra month to be absolutely certain. That's just me being conservative about it.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline DomNYC

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Re: Conflicting information on PEP
« Reply #4 on: September 05, 2008, 10:04:28 AM »
Thanks so much for looking into this.  I decided to call the CDC again, and I spoke to a counselor who also put me through to the supervisor.  Both said the window period is the same for PEP patients and people who did not take PEP. (4-6 weeks, 3 months - 6 months) I know Ill end up testing an extra month (God willing I stay negative between then and now) because it will always be in the back of my head.  But as it was explained to me, the PEP (when it works) actually "aborts" the infection from occuring rather than blunting or delaying it. People on these meds who are HIV positive test positive anyway. But again, there isnt scientific proof that it doesnt affect the window period. 

You would think this would be a pretty straightforward study to do, and I dont get why they havent.  All they need to do is compare people who are on PEP vs Non-Pep, and track at what point they tested negative or positive and see if there is a difference. They've been using PEP for 10 years now, so you'd think someone would have studied this, as it is important to know. I guess to sum things up, the CDC does not change their recomendations regarding the window period for PEP patients, and given how conservative they are, that is a good sign. But for peace of mind, I guess going the extra month will be a must for me :-[  Thanks again for your help and encouragement. Please keep me in your prayers. 

Offline jkinatl2

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Re: Conflicting information on PEP
« Reply #5 on: September 05, 2008, 11:00:31 AM »
Quote
All they need to do is compare people who are on PEP vs Non-Pep, and track at what point they tested negative or positive and see if there is a difference.

All things being equal, this would be an accurate measurement. however, some people will have unprotected sex during PEP or after, or share injectable drug needles, etc. Patient report relies on total compliance and honesty. And people lie. Or, they conveniently "forget" behaviors and events. Like the guy who swore he got HIV through protected sex, because he ALWAYS used a condom with other guys. Only he also had sex with women, unprotected. he just didn't "count" that.

Human studies, especially those which rely on patient report, are the softest science there is. People lie. Researchers intimidate. Researchers fail to ask the right questions on the right day to the right people. The fact that we know as much as we DO is based primarily on controlled studies using petri dishes, primates, and manufactured SHIV and HIV. Human studies often validate this foundation, but not always.

I agree that it would be very helpful to know. But barring Nazi-Era scientific ethics, I just don't see it happening.  There have been a notable few exceptions to this rule, but short of exposing a thousand or so people to precisely the same strain of HIV on the same day, at the same time, when the patients are in identical health and have the same genetic structure, I don't see solid science coming out of a study.

At best we have a ballpark figure.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline DomNYC

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Re: Conflicting information on PEP
« Reply #6 on: October 22, 2008, 08:53:45 PM »
Since my potential exposure took place, Ive been going along in the testing process until I began feeling ill with ssore throat and sinus issues.  I became concerned and went to see my doctor.  He was not concerned, but gave me a pcr test and elisa anyway (along with a hep c viral load test, hep c standard test, cbc, urine analysis and syphliss test. I waited a week for the results to come back, called today but my doc was out at a conference. The nurse asked if I wanted to hear my results from another doc that could be arranged. Instead a second nurse got on the phone, and read through my results and seemed confused by them which made me quite nervous. She said they found blood in my urine and my counts were "a little off" but theverything else seemed ok. I didnt get the impression she was on top of things when I hung up the phone so I called back and asked my doc's assistant if another doctor could tell me my results.  The attending doc called back and said the hiv test and hep c were fine but I needed to follow up on the urine test--he assured me that blood in the urine would not be related to hiv.  Then he says: "I know you'll be seeing your regular doc tomorrow"..which surprised me alot. I didnt make an appointment, but apparently the nurse made one for me. Now Im freaking out because Im worried they told me I was negative just to get me in to see the doc tomorrow.  Could that be the case? Could they do that just because giving bad news is something they want done in person? I'm extremely scared at the moment.

Offline Andy Velez

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Re: Conflicting information on PEP
« Reply #7 on: October 22, 2008, 09:06:28 PM »
Dom, you really need to take some nice deep and slow breaths in and out. No kidding.

There is absolutely nothing symptomatically which are you reporting which is suggestive of HIV. And the ineptitude of the doctor's office in getting your results to you is not something you should misnterpret as more bad news coming. Uh uh. Also, blood in urine happens for all sorts of reasons  that have nothing to do with HIV. Like something as innocuous as a little capillary breaking or in some instances bladder stones. That's something for your doctor to follow up on.

I say you are worrying needlessly. Find something to watch on tv tonight or read or do something enjoyable. You are making a Taj Mahal of Problems where I don't see any existing as far as HIV concerned. Really. Now, get busy with other things.

Tomorrow you'll get that negative confirmed. Really.
Andy Velez

Offline DomNYC

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Re: Conflicting information on PEP
« Reply #8 on: October 22, 2008, 09:12:36 PM »
Thats just what I needed to hear Andy.. Thank you from the bottom of my heart...

Offline DomNYC

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Re: Conflicting information on PEP
« Reply #9 on: November 08, 2008, 09:03:29 AM »
Hello,

I just wanted to ask for reassurance on the window period. I tested negative yesterday (90 days post the potential exposure, and 61 days post PEP-- oraasure hiv1/hiv2 finger stick), and prior to that I had a negative PCR and ELISA at (68 days post potential exposure and 39 days post pep). 

1. Do I have another month to go before I can get a truly conclusive result, given that I was on PEP?  The testing center Ive been going to assured me that yesterday's negative result was a final conclusive, but that's not what Ive read here, given that I was on PEP.

2. Would conclusive result in 30 days from now be the final time I need to get tested for this incident?

3. Can I feel confident that my latest results will not change given yesterdays negative result and the PCR test I took a few weeks ago?

Thanks in advance for all your help.
« Last Edit: November 08, 2008, 09:05:32 AM by DomNYC »

Offline Andy Velez

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Re: Conflicting information on PEP
« Reply #10 on: November 08, 2008, 09:37:21 AM »
Dom, that's very happy news that you have tested negative.

Should you decide to re-test, which is what we recommened, iI fully expect you will continue to negative.

It is our understanding that the count of 3 months/13 weeks for a final, reliable result is from the time when PEP is completed. We can't account for what others tell you.

So yes, you should re-test. I think it is a slam dunk to get a negative, but why leave any doubts in your mind.

Cheers.
« Last Edit: November 08, 2008, 09:38:59 AM by Andy Velez »
Andy Velez

Offline DomNYC

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Re: Conflicting information on PEP
« Reply #11 on: November 08, 2008, 04:55:53 PM »
Thanks again Andy.  I will test again next month.. Its just been so hard to wait it out... but I made it this far and I hope next month I can put this all behind me.. Thanks again. 

Offline Andy Velez

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Re: Conflicting information on PEP
« Reply #12 on: November 08, 2008, 05:00:36 PM »
Slam dunk coming up next month. Really.
Andy Velez

 


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