Author Topic: Side-effects or the worried well? (Read 11200 times)

toughtimes · « **on:** April 26, 2011, 10:44:48 am »

First of all, I wanted to thank everyone who has been posting on here. Over the last month I've been reading other threads and learning a lot about HIV.

I'm a gay man, and my partner tested positive for HIV on 1st April (thought it was a sick joke to start with!) As I had serveral high-risk (unprotected receptive anal) exposures with my partner in the days leading up to this, the medical staff decided I should start a course of PEP (Truvada/Kaletra). Whilst one high-risk exposure occured 18 hours before starting PEP, several occasions where I was both the insertive and receptive partner occured well outside of the 72 hour PEP window. I think as far as chances go, mine are slimmer than most because of the extent of the exposures.

Whilst I'm not here to discuss my partner, it would appear he was one of the unlucky ones that didn't know he was infected. I believe the infection was there when we first met, and have no reason to doubt his loyalty to me. I'm devastated for him and this has been incredibly tough, both being strong for him whilst dealing with the uncertainty of my HIV status.

I'm now coming to the end of my 28 days of PEP and beginning to feel a little unwell.

I've been lucky on the PEP. I've not experienced nausea or any noteworthy diarrhoea. I've had elevated triglycerides, which began to drop as time went on. My phosphate levels have dropped markedly since starting the treatment. I've now found myself feeling more tired than in the past few weeks, my arms and legs regularly ache and I have developed swollen lymph nodes in my neck and groin. I only noticed the ones in the groin after I began feeling pain there. In the neck the swelling appears to be more pronounced, and painful, around my left ear - leading me more to believe that this is some kind of localized ENT infection, but would that cause lymph nodes to swell elsewhere in the body too? I haven't noted a fever or rash.

My question is whether I should be expecting to feel like this on the medication, so late in the 28 day treatment?

Andy Velez · « **Reply #1 on:** April 26, 2011, 03:03:29 pm »

PEP is strong stuff. Don't go misinterpreting any symptoms you maybe experiencing as ARS.

Just in general neither the presence nor the absence of symptoms will ever tell you anything accurately about your HIV status. Only an HIV test at 13 weeks/3 months can give you a conclusively negative answer.

And you need to count the time for testing from when you complete PEP. You can do a test if you want to at 6 weeks after completing PEP. If you get a negative result at that point then you are likely to continue testing negative.

Good luck.

toughtimes · « **Reply #2 on:** April 27, 2011, 09:08:37 am »

Thanks for the reply Andy. I appreciate it gets frustrating when people constantly ask about symptoms that would at any other time be dismissed as normal.

After posting yesterday I decided I'd best stretch my legs to see if inactivity was the cause. I spend a lot of time sat at a desk and normally exercise loads, this fell by the wayside after starting PEP. I went out on my bicycle and feel a great deal better today than yesterday. Working the muscles and realising some endorphins seemed to do the trick.

I think most of what I'm experiencing comes from is anxiety. I don't know of another time in my life when I've experienced stress on this level. I know my source partner is positive and have had high risk exposure, so I'm very worried the outcome won't be a rosy one.

Before starting PEP I tested negative on the rapid antibody test, which I'm told has a 12 week window period, and also negative on a blood test, which they told me had a 4 week window.

The specialist who is monitoring me during PEP has advised the earliest I can test is 4 weeks after completing PEP. Is there any reason to not test earlier to see whether I'm positive yet... taking the view that a negative result is just inconclusive?
I am all too aware that I'm not conclusively negative until I test negative with a blood test at 6 months post-PEP. I am however conscious that it's already 4 weeks since I was last tested, things could have changed in that time, and it is around 6 weeks since my first unprotected exposure occurred. If I'm positive already, wouldn't it be better to know sooner rather than 4 weeks later?

Andy Velez · « **Reply #3 on:** April 27, 2011, 09:14:21 am »

You do not have to test out to 6 months after PEP. That's an error. A negative result at 3 months past the completion of PEP will be sufficient for a conclusive negative result.

You can of course test at 4 weeks, but 6 weeks after PEP would be better. At that point all but the smallest number of those who are going to seroconvert will have done so. But it's up to you. You're obviously concerned. You would be better advised to make a real effort to focus on other matters in your life during the waiting time. If you do that you will be amazed at how much more easily the waiting time can pass.

toughtimes · « **Reply #4 on:** April 27, 2011, 10:00:32 am »

So 6 weeks after PEP, a total of 10 weeks after exposure, implies PEP delays seroconversion?

Andy Velez · « **Reply #5 on:** April 27, 2011, 10:23:11 am »

Yes, it can affect the accuracy of the result so the countdown time for testing begins after the completion of PEP.

Ann · « **Reply #6 on:** April 27, 2011, 10:35:10 am »

TT,

There is a layman's explanation of how PEP works here. Do not post in that thread if you have more PEP related questions after reading, come back here to your own thread, please.

Ann

toughtimes · « **Reply #7 on:** April 27, 2011, 01:20:48 pm »

So if I'm clear, PEP doesn't delay seroconversion, it just masks the presence of the virus in the system, if it's there.

I know worrying won't change my result in 3 months, it somehow doesn't stop the anxiety from eating away at me.

My partner had the result of his first set of bloods and his viral load was pretty high - 180,000. Yet another damning addition to an already desperate looking picture. I think the odds of me dodging this one are pretty slim now

There are many reasons for me not wanting to become infected, but one at the front of my mind is the blame my partner will place on himself for this happening to me. He's blaming himself already, so that can only worsen.

Ann · « **Reply #8 on:** April 27, 2011, 01:53:51 pm »

TT,

Most go by the theory that it can delay seroconversion. Dr Bob over at The Body is the only one I've read who has a different opinion.

I'll try to re-word the post I linked you to above, maybe it wasn't clear enough.

PEP works the same as any other antiretroviral - it stops the virus from replicating, therefore suppressing it. If the medication succeeds in suppressing the virus before it gets into certain "reservoirs" where it can hide from the meds, then the virus can be successfully eradicated from the body. This is why there is a time limit on initiating PEP and why the sooner PEP is initiated, the better.

Dr Bob believes that the antibody tests are not affected by PEP. However, the body needs the stimulus of the virus's presence in the bloodstream in order to begin antibody production. If the PEP is taken soon enough, the virus could be suppressed and eradicated quickly enough and not stimulate antibody production.

If the virus manages to get into and hide in the reservoirs, that may be enough to stimulate antibody production, but I'm not sure on that point. I don't think most experts are either, and this is why the generally accepted testing window following PEP is three months post PEP. When PEP is stopped where the virus has successfully hidden out in the reservoirs, the virus will begin to come back into the bloodstream and replicate, thereby stimulating a delayed antibody production. This seems to be the accepted theory. (Although one that Dr Bob appears to reject.)

The word seroconversion means that antibody production has been stimulated and enough antibodies are present to cause a reactive, ie positive, antibody test result. The blood (serum or in this case, sero) has converted from hiv negative to hiv positive.

I'm surprised that you were not also given an RNA PCR test for a baseline, given your circumstances. This is one instance where the RNA PCR tests are approved for diagnostic purposes. A newly infected person will usually have a VL show up on the RNA tests within a week or so of infection, while the antibody tests typically take three to six weeks to show positive.

At the end of the day, the earliest you should test post PEP is six weeks. A six week negative means that it is highly unlikely you will test positive at the three month point. A three month test will be conclusive.

Ann

toughtimes · « **Reply #9 on:** April 27, 2011, 06:06:35 pm »

What's an RNA PCR? Can you obtain them in the UK?

toughtimes · « **Reply #10 on:** April 28, 2011, 09:36:01 am »

Ah OK I understand now, an RNA PCR wouldn't be of any use now, just in the immediate aftermath of an infection. I'll wait out for the tests recommended by the clinic, they're advising persistent testing over the next few week does nothing but keep the individual concerned on an emotional rollercoaster. I'm inclined to agree.

Last day of PEP, so I'll be able to have a beer with my friends this weekend - I've avoided drinking the whole time. Perhaps lifting my mood with some alcohol-fuelled socialising, and no longer being reminded with the twice-daily pill-popping, will help me put it out of my mind.

Just a quick question, and this one's about risk (somewhat hypothetical). I know my high-risk receptive exposure occurred 3 times in the two weeks preceding PEP. In that same period I also had as many insertive exposures too. Is it plausible for an infection not to have occurred on any of those exposures? Or, is it a near certainty that an infection would have occurred in so many exposures, with the possible success of PEP now being the only thing preventing HIV taking hold?

Thanks again for all your support and answers, this forum has been a lifeline.

Ann · « **Reply #11 on:** April 28, 2011, 11:29:16 am »

TT,

A friend of mine had a "concerned on an emotional rollercoaster" experience with a GUM clinic too. GUM clinics that do not have a on-site, dedicated hiv staff (like the one my friend went to) tend to do that. Not only was he put on PEP for a low risk incident, but he was also put on it outside the window period for PEP. They had him come in every week during PEP for a whole battery of unnecessary testing and they had him going in pretty much every two weeks post-PEP for antibody testing. A total waste of resources. I had the distinct impression that not only were they trying to scare him, but they were also trying to punish him and "teach him a lesson". BTW, he ultimately tested conclusively hiv negative, but I would have expected that even if he did not take PEP.

Given that your last unprotected experiences were within the two weeks prior to your friend testing positive, an RNA PCR test (along with the antibody baseline) would have been an appropriate response. It may be that they didn't want to wait the extra few days, but if they had done the RNA baseline and gave you PEP anyway, they would have been better informed on how to deal with your on-going treatment depending on the RNA result. But that's all water under the bridge now.

So, going forward, you may as well go in when they want you to for testing. If you haven't been infected, every negative result will be a reassurance and if you have been infected, at least you'll find out sooner rather than later.

And for other Am I Infected forum members who may be reading this thread - do not even dare to try and compare this situation to your own. This situation is somewhat unique, so don't even go there and bring this thread up in your own - and do NOT post in this thread.

TT, it is possible that you were not infected. Not every exposure is going to result in infection. Hiv really is a fairly difficult to transmit virus. But I have to be honest and say that it is also possible that you were infected - particularly during one of your receptive incidents - if he came in you. Unfortunately you're just going to have to sit it out and see.

And please do have a few beers down the pub this weekend. Relax and enjoy yourself - nothing you do at this point is going to change the ultimate outcome. And no matter what the outcome, you're going to be ok. You ARE going to be ok!

Hang in there.

Ann

toughtimes · « **Reply #12 on:** April 28, 2011, 01:00:01 pm »

Seems like I'm dangling from a pathetically fine thread of hope here. I agree this is more a case of not if, but when they're going to tell me.

To be honest, I don't know what tests they did. They did an instant one and then after learning my partner had tested positive they drew blood. The results of that came back 5 days later. They seemed to think that one had a 4 week window. Would they have done an RNA PCR in those bloods?

Being on PEP whilst going through Acute HIV Infection can cause the virus to become resistant to the drugs right?

Ann · « **Reply #13 on:** April 28, 2011, 03:35:13 pm »

TT,

I don't know who you are agreeing with when you say "I agree this is more a case of not if, but when they're going to tell me." You certainly aren't agreeing with me as I think you do have a chance of coming out of this hiv negative. Don't be so pessimistic.

The test that many health care professionals will say has a four week window period is usually a duo test. A duo test tests for hiv antibodies, but it also tests for the p24 antigen. The p24 antigen is only present in the first few weeks before enough antibodies are produced to trigger a reactive - aka positive - antibody test.

Once antibodies are produced, the p24 antigen disappears. However, it is possible to have a short window period between the p24 disappearing and enough antibodies being present to trigger a reactive antibody result.

While the duo test is very likely to pick up an infection in the first four weeks, six weeks is a better indication and any negative result on any test will still need to be confirmed with antibody testing at the three month point. A pain in the arse to be sure, but better safe than sorry.

You'll have to ask at your clinic if they also used an RNA test. They may have but not mentioned it to you - information overload and all that.

Being on PEP while going through acute hiv infection will not in itself cause resistance. Resistance may happen only when PEP is stopped - if the person is actually going through acute infection. However, this is not likely to happen with the combo you're on and that's one of the reasons they use this combo for PEP. So don't worry needlessly about this. It's so remote a possibility in your case that it's not worth worrying about.

Now go plan a pub-crawl with your mates for tomorrow night. We're all going to need a night in the pub tomorrow after all this Wedding palaver.

Ann

toughtimes · « **Reply #14 on:** April 29, 2011, 12:07:46 pm »

Last dose of PEP this morning, so that's it, done. Hope the intermittent muscle/joint aches will subside now. Also hoping I'll see the lymph nodes calm down.

I appreciate you're saying "I have a chance" - probably 1/33 per exposure right? Not great odds, but weighted in my favour I suppose, and the PEP might have worked. Either way, I just need to keep my anxiety under control for the sake of my work - I have a high pressure job - and for my man. He really needs me at the moment.

Ann · « **Reply #15 on:** April 29, 2011, 12:33:11 pm »

TT,

As you had a duo test and it was negative, I'd say your chances are better than 50/50 in your favour. You really do have a good chance of coming out of this ok. But even if you don't, both you AND your man are going to be ok.

Ann

toughtimes · « **Reply #16 on:** April 30, 2011, 10:44:01 am »

Better than 50/50 is better than what I perceive my chances to be, so I'll keep that with me. Thanks Ann.

Couple of quick questions:
How long does it take for Truvada and Kaletra to leave your body? I'm 30 hours beyond my final dose now and last night experience crippling pain at the bottom of my neck and along my left shoulder. I'm not usually a pansy about aches and pains but this was like a knife being twisted in my neck when I moved. Can the drugs be causing?
Also regarding the drugs leaving my system, I was told by the clinic about nasty interactions with alcohol and drugs. What's a safe 'dextox' interval before hitting the sauce... in a bid to cure the neck ache!

Ann · « **Reply #17 on:** April 30, 2011, 10:56:13 am »

TT,

The pain in your neck will have nothing to do with your combo. It's most likely the stress you've been under recently has caused tense muscles. I know when I'm tense over something, I easily get neck and shoulder aches and pains. All too often, in fact. Get your man to give you a shoulder rub.

You shouldn't have any problem with alcohol now that you've stopped the combo. Go out for a few pints and gauge how you feel - if you feel like you always did after one or two, carry on. The main problem you might face is nausea but as your last dose was last night, it shouldn't be a problem. Go have a few pints and relax.

Ann

toughtimes · « **Reply #18 on:** May 02, 2011, 11:31:51 am »

Swollen lymph nodes on both sides in neck, armpit and groin for over a week now... and seems to have worsened since completing PEP at the weekend. To me this is indicative of a systemic infection.

toughtimes · « **Reply #19 on:** May 03, 2011, 12:04:56 pm »

Can common colds cause lymph nodes to swell in the groin as well as the neck?

toughtimes · « **Reply #20 on:** May 03, 2011, 07:53:32 pm »

OK, I've taken the view that me not yet starting my annual hayfever regime (because I was on PEP) could be causing the symptoms I'm experiencing, so I've started on the antihistamine tablets and will crack on with life. Little use posting any more; what's done is done.

toughtimes · « **Reply #21 on:** September 09, 2011, 04:23:37 am »

So I stuck to my guns and didn't bother posting any more questions about "symptoms" and just got on with life for a bit... actually quite easy to do if you put it out of your mind and keep busy.

I had an instant (antibody) test at 11 weeks post-PEP which was negative. Because of holidays, I thought it best to delay the conclusive 3 month blood test until they were out of the way. I've done the bloods now and I'm now just waiting on the results. Pretty nervous now, as my situation isn't typical - my risk was high and multiple.

Ann · « **Reply #22 on:** September 09, 2011, 05:58:41 am »

TT,

With that eleven week negative, there's no doubt that you will get another negative result.

Ann

toughtimes · « **Reply #23 on:** September 24, 2011, 08:44:44 pm »

18 weeks post-PEP and my blood results came back negative. Now my focus can switch to supporting my partner, and making sure we follow all the necessary precautions in future.

Thank you to everyone who has offered advice in this thread, it has been a huge help during such a stressful period.

Ann · « **Reply #24 on:** September 25, 2011, 10:24:27 am »

TT,

It's good to know that you tested conclusive negative. Thanks for letting us know the ultimate outcome, even if your negative status was already evident when you tested negative at eleven weeks post-PEP.

You may want to talk to his doctor about possibly having the first few doses of PEP on hand in case of a condom break while you're the receptive partner. You wouldn't need it as the insertive partner. If you're making sure the condoms are being used correctly and with plenty of lube, this shouldn't be an issue anyway, but you may want to have a PEP starter pack on hand for peace of mind.

Good luck going forward. Hope to never see you here again!

Ann

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Author Topic: Side-effects or the worried well? (Read 11200 times)