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Author Topic: High risk exposure started pep Help  (Read 3055 times)

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Offline concerned.chap1234

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High risk exposure started pep Help
« on: November 01, 2019, 09:55:01 am »
Hello, forgive my written english. I will write my symptoms to get it off my chest. I come to this forum in need of help and advice. (Male) I had unprotected oral BJ and unprotected anal sex receptive partner for around 10 mins. stupid, so stupid I was. Iím unsure if there was ejaculation. I was very drunk and would never have done it sober. The person was Gay therefore a high risk group and I never asked his HIV status and have no way of contacting him it was a stupid first time one night stand experimenting as im actually straight but  a tiny bit bi curious hence the lapse in judgment and didnt know how serious my risk was at the time. After further research I now know and I feel serious stress and anxiety.

I was put on PEP after 59 hours I have 4 days left of PEP its Tenofovir disoproxil & emtricitabine and Raltegravir

 The problems I have had is

Day 5 I developed tonsillitis with white exudate on my tonsils. I was given 7 days of penicillin antibitoics which cleared the white excudate but the swelling of the tonsils remained.
Also I was not told about drug interactions i was taking multi vitamin tablets in the morning on day 4-5-6-7 and in between taking vitamin mineral shakes that had zinc and iron in it.
Also I did take some rennie which has magnesium in it on 2 occasions at bedtime right before my pep dose! Which i later found out interacts with raltegravir! Why didn't they tell me about this! I only found out by my own research!

Does these interactions have the potential to fail the pep regimen?

The other symptoms I have had over the last 3 weeks is

From Day 7 swollen to the size of a kidney bean painful lymph nodes behind the knees, muscle pain in calfs, glutes and muscle above back of knees. At exactly the same time.
Gradually the pain and slight swelling moved up through my lymph system
Pain in groin nodes both sides
Pain and swelling to bean size in armpit nodes
Pain and swelling slightly in neck nodes below ears under jaw and around the back of the neck
Pain in what i think was my spleen
Pain is now on and off in all lymph node locations to this day its on and off but there is no more swelling the swelling lasted 2-3 days.
Headache constant. Was very bad for one day and the back of neck lymph nodes were exceptionally painful that day, I was sensitive to light on that day
General muscle pains all over body.
White exudate came back on my tonsils for 5 days then went away without treatment swelling is still there.
I had a dry cough for the first 2 weeks from 7 days
There has been small red raised rashed but so small i cant tell if they are related to a hiv rash
I have felt hot at times but not sure if i have had a proper fever or not.
Currently on day 27 i still have on off pain in my occipital lymph nodes on back of neck and throughout my lymph nodes the ones that I listed. I have pain in my stomach/ abdomen. The constant headache subsided yesterday and has not decided to come back. My tonsil on one side is still swollen after 3 weeks but no pain. I have white layer on my tounge causing bad breath aswell it scrapes off a bit but just comes back

If you could answer some questions for me I would be very grateful,

My concern is that my pep has failed after 5 days due to the drug interactions from what you have read do you think this is possible?

I did a 5th gen ag/ab test at 3 weeks post exposure home kit finger prick test and sent it to a lab it was non reactive. What would be the accuracy of this test at this point? Can I breath any easier?

Am I right in saying that if the PEP had failed would the drugs drive the virus down to low levels so i would not get a proper p24 antigen reading on that 5th gen test due to low levels of the virus?

I did a 3 1/2 week antibody test only finger prick at home biosure one it was negative.

I have a 4th gen ag/ab test booked for 05/11/19 one day after my PEP finishes. What is the likelyhood of this test picking up infection at that point in time given pep etc.

If i have been infected when I stop my pep do you think the virus will suddenly start replicating and I will get very ill and seroconvert? If i haven't already?

I really want to be one of these WW cases but by the way my body feels it has never felt like this before. Iím normally fit healthy and have zero pain anywhere. I never even get cold viruses really. I am convinced I have contracted HIV. so any support or advice/ Help you could offer would really help. I don't deserve this Im a good person and I feel like I have been struck down badly. Waiting for these results is killing me.

Thanks for listening.













Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #1 on: November 01, 2019, 10:23:12 am »
Hiya,

The person is not a high or low risk to you, it's what activities you choose to engage in and how that either are risks or not.

The good news is PEP is highly effective when started within 72 hours and despite the Rennie, I suspect if this was your only exposure and you finish the course of medication that you will be fine. just test to confirm this.

Test with an approved HIV antibodies test 6 weeks post finishing PEP for a result, this result will rarely ever change and test at 3 months post finishing PEP for a conclusive result.

In the meantime, I hope you do start to feel better however instead of stressing about it go see your doctor again to treat whatever is making you sick. Some of it would not be HIV related regardless of your HIV status.

Here's what you need to know in order to avoid HIV infection:
Use condoms for anal or vaginal intercourse, correctly and consistently, every time, no exceptions. Consider starting PrEP as an additional layer of HIV protection going forward

Keep in mind that some sexual practices which may be described as Ďsafeí in terms of HIV transmission might still pose a risk for transmission of other STI's, so please do get fully tested regularly and at least yearly for all STI's including but not limited to HIV and test more frequently if unprotected intercourse occurs

Also, note that it is possible to have an STI and show no signs or symptoms and the only way of knowing is by testing.

More information on HIV Basics, PEP, TaSP and Transmission can be found through the links in my signature to our POZ pages

Kind regards

Jim

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« Last Edit: November 01, 2019, 10:25:33 am by Jim Allen »
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #2 on: November 01, 2019, 03:40:27 pm »
Hi Jim, thanks for the quick reply.
Im praying that you are correct about the pep working properly but I just don't understand all these symptoms that have been going on for 3 weeks. The doctors just say its a viral issue so I just have to ride it out. Its not easy.
My whole life has been put on hold I was happy before all this dating girls enjoying life now I'm fearing never having that again.

How often do you hear about pep failing?

In your experience how accurate would a 4th gen test be 31 days/ 4weeks2days post exposure 1 day after PEP finishes?

I will be paying for month subscription to reply. Again and will need more advice im sure during this process.

Thanks

Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #3 on: November 01, 2019, 04:19:09 pm »
viral issues are common particularly this time of year, hope you feel better soon.

No I don't hear about PEP failing often and as for testing any negative result is a good sign, however, test with an approved HIV antibodies test 6 weeks post finishing PEP for a result, this result will rarely ever change and should you wish test at 3 months post finishing PEP for a conclusive result.
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #4 on: November 02, 2019, 04:53:13 am »
Hi Jim and anyone else who can help

With regards to HIV acute infection.
Do you have acute HIV for a few weeks and then a seroconversion illness that follows that?
this Illness i have had (if it is to do with HIV) would that have been a seroconversion?

I will try not to discuss symptoms but the process itself instead.

My concern is that i have felt sick on and off for 3 weeks now which maybe acute HIV infection then when i finish pep this monday I will start seroconverting?

Also some places are saying
On pep
Pep finishes then a 6 week test then 3 month test
On pep
Exposure then test 4week post E 6 week post E and 3 month post E regardless of pep being used

Which is best?

Many Thanks for your time and advice




 

Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #5 on: November 02, 2019, 05:52:59 am »
Hiya,

I know that you are stressing, hence you are asking me questions that have already been answered.

PEP is highly effective, so try to relax, consider the testing as simply confirming your negative status. Test with an approved HIV antibodies test 6 weeks after finishing PEP for a result, this result will rarely ever change. If you wish to confirm the result then retest at 3 months after finishing PEP.

The majority of people have none or at least no noticeable initial symptoms, neither are they unique hence the presence or lack of symptoms means nothing.

I hope you feel better soon
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #6 on: November 02, 2019, 09:21:04 am »
Your words are calming thankyou.

Ok I understand with the testing now.

If you could just answer this question it would really help.
Do you get acute/primary/ARS Hiv infection illness then seroconversion or just seroconversion on its own? Theres so many terms that I am confused with this.

Also I saw this that is very interesting about a cure what are your thoughts
https://www.google.co.uk/amp/s/www.medicalnewstoday.com/articles/amp/325653

Thanks for your time.

Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #7 on: November 02, 2019, 09:35:08 am »
You're welcome

If you could just answer this question it would really help.
Do you get acute/primary/ARS Hiv infection illness then seroconversion or just seroconversion on its own? Theres so many terms that I am confused with this.

Answered already. Seroconversion is simply the period during which the body produces detectable levels of HIV antibodies, normally this is within 22-28 days although some take slightly longer, most tests will give a result in 6 weeks, although you are on PEP hence the testing guidelines are longer to be conservative. 

The majority of people have none or at least no noticeable symptoms from the body producing them or reacting to this.  ARS symptoms might happen to a few although reports are overhyped and overrated, it just feeds the paranoia to be blunt.

You are overthinking this, test when due that's the only way to know.

Quote
Also I saw this that is very interesting about a cure what are your thoughts
https://www.google.co.uk/amp/s/www.medicalnewstoday.com/articles/amp/325653

Look if I was a mouse or a petri-dish I would have had 100's of cures by now from the past 20 years, sadly although it is scientifically very interesting it's never resulted in something that could be rolled out to community living with HIV.

My thoughts are given that HIV is bound to us at a DNA level infecting various cells types that we are only just learning about a cure will not happen within my lifetime, although better treatments and perhaps long term suppression might. 

A functional cure I personally already have with current medication as it's a mindset.  I pop one pill a day and it keeps the HIV away (Suppressed) so I can live a long normal healthy life.  ;)

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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #8 on: November 02, 2019, 11:49:09 am »
I see with the seroconversion thing thanks.
Well I have already booked in a 4th gen test next week so I may aswell go and do it. From what I have read if the PEP has actually failed then the test should pick up infection so it may be a good way to test if the pep has failed at least as it should pick up p24antigen. For further testing I will take your advice on it.


Thats good that you only have to take one pill a day. I think i read you have a wife and family aswell that is very good. It gives me hope i may not have to be alone if the worst happens. Also its a selfless thing to help people on here so know that it is appreciated. If I have caught it I am wanting to start treatment asap to prevent as much damage to my immune system as possible hence wanting to test asap its horrendous waiting.


Many thanks

Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #9 on: November 02, 2019, 12:08:15 pm »
Quote
I see with the seroconversion thing thanks.
Well I have already booked in a 4th gen test next week so I may aswell go and do it. From what I have read if the PEP has actually failed then the test should pick up infection so it may be a good way to test if the pep has failed at least as it should pick up p24antigen. For further testing I will take your advice on it.

Any negative result is a good thing. If the PEP failed the test at 6 weeks post finishing PEP would rarely change

Quote
Thats good that you only have to take one pill a day. I think i read you have a wife and family aswell that is very good. It gives me hope i may not have to be alone if the worst happens. Also its a selfless thing to help people on here so know that it is appreciated. If I have caught it I am wanting to start treatment asap to prevent as much damage to my immune system as possible hence wanting to test asap its horrendous waiting.

You're welcome.

With treatment living with HIV is simply no longer the barrier it a "normal" life it once was. I have Kids & a Family, a Career (shitty one like most people) and I travel a lot. Still, best HIV is avoided but worst-case scenario there are far worse things to deal with in life. ;)

Jim
« Last Edit: November 02, 2019, 12:16:32 pm by Jim Allen »
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #10 on: November 04, 2019, 03:47:31 pm »
I just taken my last dose of pep 10 mins ago

I still have swollen tonsils with slight exudate, pain on and off in multiple lymph node areaís theres a couple of places that has constant pain and its the nodes behind my knees and nodes behind my neck. The knee node pain has been there since day 7 after exposure.

 Im well upset knowing I had ars symptoms for 3 weeks during the PEP as I shouldnt have any if it was working and there still ongoing. I am so convinced I have HIV due to these lymph node and throat swelling issues. Im trying to hold on to hope and think ah well it could be this then research it and the answer is no. Every symptom I had a every feeling I get seems to point at HIV infection.

I have a 4th gen test tomorrow would it show positive in any way if pep had failed?
It will be 4weeks 1 day post exposure.

Im very down

Thanks

Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #11 on: November 04, 2019, 05:46:50 pm »
Test tomorrow, if it's negative then test with an approved HIV antibodies test 6 weeks after finishing PEP for a result, this result will rarely ever change. If you wish to confirm the result then retest at 3 months after finishing PEP.

Also see your doctor to treat whatever is making you feel unwell instead of hyperfocsing on HIV and incorrectly thinking every twitch has to do with HIV.

Jim
« Last Edit: November 04, 2019, 05:51:50 pm by Jim Allen »
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #12 on: November 07, 2019, 05:22:58 pm »
Ok so I had a Alere combo ag/ab fingerprick test done day 32 post exposure 2 days post PEP it was negative. I hear these are very acurate tests. I had blood drawn for a 4th gen ag/ab test that i get my results for mon or tues I will post them aswell.

I am coming across a lot of information in different places that pep does not affect a 4th gen ag/ab lab test and can be relied on to show someones status on testing just after pep finishes due to the cdc allowing people who have completed pep to go straight onto prep, providing they have tested negative on a 4th gen test post pep. No gap needed before starting prep. Because apparently no evidence exists that prophylactic antiretroviral use delays seroconversion. What do you make of this?

My hope is that this is correct and when i get my test results monday I can pretty much rely on it with good certainty if it is negative that it wont change on further tests

Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #13 on: November 07, 2019, 05:47:13 pm »
Hiya,

That's nice....

Look I don't want to sound like a prick or arrogant but after 20 years the day, you tell me something I have not already read or studied about HIV is the day I eat my hat. There have always been two trains of thought on nPEP /oPEP and testing, I tend to not gamble unless there is strong counter-evidence, there is not

Hence, test with an approved HIV antibodies test 6 weeks after finishing PEP for a result, this result will rarely ever change. If you wish to confirm the result then retest at 3 months after finishing PEP.

You can ask again but until proven otherwise my position based on the available info will not change

There was a nice presentation from R.Harrington in 2016 on this topic https://depts.washington.edu/nwaetc/presentations/uploads/219/nonoccupational_hiv_post_exposure_prophylaxis_npep.pdf

Anyhow, I lean towards being a more conservative train of thought when given testing guidelines in combination with ART usage (HIV Meds). ART if taken correctly rarely fails, although there are cases when it fails with result in acute infection-causing delayed detection.  Hence rule of thumb is PEP is a 28 day delay so simply apply testing guideline post finishing PEP and for PrEP users they should be testing routinely.

2015:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4641668/
2017:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5578893/

There are plenty more studies and case reports over the years from oPEP/nPEP & PrEP above is an example, if you really want to go study it in length than by all mean do it should take you a few weeks/months.

As for the 4th gen, it's just essentially just a 3rd gen antibodies test combined with p24 testing, p24 might pick up on an HIV 1 infection sooner although is not standalone for good reason due to gaps and so the combination still relies on the antibodies to be the main screening indicator in short not much has improved on that front over the past 15 years or so.

Jim
« Last Edit: November 07, 2019, 06:27:30 pm by Jim Allen »
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #14 on: November 07, 2019, 06:12:42 pm »
Ok thanks I was interested to see what you thought about it as you are knowledgable

I guess this is me being impatient and trying to get an answer and feel like I'm out of the woods so to speak. Its the anxiety. I just need this over with Iím praying for a negative result monday/ tuesday and thereafter worst month of my life without a doubt.

Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #15 on: November 07, 2019, 06:14:09 pm »
Oh i didnt see the second half of your post. I will read and respond

Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #16 on: November 07, 2019, 06:20:14 pm »
Hiya,

Look I really do understand, I've been the person waiting for test results in the past.

End of the day though, all the reading is just going to mess with your head, so here is the condensed to the point and relevant version to save you from that.

"PEP is highly effective when started within 72 hours, I suspect if this was your only exposure and you finish the course of medication that you will be fine. just test as outlined to confirm this. If it helps the way to think about this is would be you are simply testing to confirm your negative status, nothing more to it"

In the meantime live your life as normal as there are far more important things to focus on with your time. ;)

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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #17 on: November 07, 2019, 06:44:34 pm »
I really appreciate that and it really helps that you have been in this position before and you show compassion to help me and others too.

Its funny 2 of the 3 links i have actually already read during my month of hell and research this paragraph gives me hope

Seroconversion

Eleven patients seroconverted within the follow-up period of the PEP protocol. One patient, however, was not treated as the source was presumed to be HIV-negative. As such, 10 of the 2731 treated patients could be possible treatment failures (0.37%). Nevertheless, 9 (90%) of the 10 treated cases continued to exhibit high-risk behavior following treatment; therefore, only one case can be considered a pure treatment failure (0.04%). Characteristics of these cases are presented in Table 5. Seroconverted patients had a mean age of 31 years (SD 9.1) and were all male and MSM. It was the first PEP episode for 9 (82%) patients and 6 (55%) consulted within the first 24 hours of the exposure. The main indication for PEP was unprotected anal intercourse (82% receptive, 27% insertive). One patient had no recollection of the exposure and eight (73%) patients were intoxicated at the time of exposure. All treated patients completed treatment; 9 (90%) were compliant and one case has no information on treatment adherence.

2,371 pep prescribed and only 1 considered a true pep failure in this study

It definitely gives me hope! I will try not to do any more research now and wait for results.

Thanks for your wisdom



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Re: High risk exposure started pep Help
« Reply #18 on: November 07, 2019, 11:30:25 pm »
You're welcome.
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #19 on: November 11, 2019, 03:33:20 pm »
Hello,

I just wanted to put in a update on my testing and symptoms for those that want to read it and if will help anyone. I currently still have generalized lymph node pain in all locations neck, collar bone, groin, behind knees elbows etc no noticeable swelling in any location apart from mild swelling still present in my tonsils, they have been that way 4 weeks now I just want them to go down!. The pain in all nodes comes and goes but is much less frequent than before im praying the pain will go completely soon. in the morning it could be painful for 5 mins in my groin nodes then no pain anywhere then 3 hours could go by then pain in my neck nodes behind the head and so on its weird and never had it in my life, also muscle pain in hamstrings and calfs is almost gone but gets painful at times. thats about it now. this is either HIV or the weirdest virus anyones ever had. I am literally praying everyday its just a crappy virus that will go and i will be fine.

I recieved the 4th gen antigen/antibody lab test results today from day 32 - 4 1/2 weeks post exposure - 2 days after pep and it was negative. Now I am hoping that if my pep had failed and the illness i suffered and mildly still suffering from was seroconversion that this test would have picked it up. But i just don't know. Also i did a biosure antibody rapid finger prick and syphilis fingerprick test today both negative. It may be too soon for both but determined to catch anything as early as possible to get on treatment.

Just one question please. Im sure you must have seen this alot so I'm drawing on your experience here so on this forum and elsewhere seeing people testing have you seen anyone test positive on follow up tests after testing negative at 4 1/2 weeks after exposure - 2 days after pep?
 
Thank you




Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #20 on: November 11, 2019, 03:44:37 pm »
Hiya,

So a negative result, meaning the symptoms so far have nothing to do with an immune reaction to HIV, or in short, it's not related to your HIV status. See your regular doctor and treat whatever has been making you unwell.

have you seen anyone test positive on follow up tests after testing negative at 4 1/2 weeks after exposure

Yes, 4th gen at 11 weeks post-exposure was the latest, although it's rare I do not expect your result to change but do test to confirm that. Try to relax, consider the testing as simply confirming your negative status.

As you were on PEP Test with an approved HIV antibodies test 6 weeks after finishing PEP for a result, this result will rarely ever change. If you wish to confirm the result then retest at 3 months after finishing PEP.
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #21 on: November 11, 2019, 04:10:31 pm »
Quote
So a negative result, meaning the symptoms so far have nothing to do with an immune reaction to HIV, or in short, it's not related to your HIV status. See your regular doctor and treat whatever has been making you unwell.

Ok thats great news if thats what you think. I will take that for sure. Yea if this continues i will probably go private due to the nhs drs i keep seeing just want me out the door and say its a virus and i will just have to ride it out. Next!  I got tested for mono and it wasnít that either.
Hiya,

Quote
Yes, 4th gen at 11 weeks post-exposure was the latest, although it's rare I do not expect your result to change but do test to confirm that. Try to relax, consider the testing as simply confirming your negative status.

Ok yea that does show Iím not out of the woods yet but this is all encouraging. Im defo more relaxed now after my results today and that the illness I suffered was probably  not seroconversion

Quote
As you were on PEP Test with an approved HIV antibodies test 6 weeks after finishing PEP for a result, this result will rarely ever change. If you wish to confirm the result then retest at 3 months after finishing PEP.

It takes so long lm never getting myself in this situation again, im fearing going back to work incase i test positive and have a mental break down and go sick again but will have to try soon. Its difficult with symptoms i may go back after my 1 month after pep result.

This info from you today has helped a lot so thanks Jim



« Last Edit: November 12, 2019, 04:21:50 am by Jim Allen »

Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #22 on: November 11, 2019, 04:11:07 pm »
Haha the quote thing didnt work sorry ha

Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #23 on: November 14, 2019, 06:00:40 am »
Hello,

I know your not a psychologist but if you could answer this it would help my mental state 

Im very concerned about these lymph nodes giving me pain in all locations i have read many stories of people that are positive that had these exact symptoms and it wouldn't go away for them for weeks after seroconversion

I feel i have to ask if you think that the 4th gen ag/ab antibody test at 4 1/2 weeks (2 days post pep) would have picked up the infection if the symptoms were due to seroconversion? Or would the pep have effectively treated the infection and stopped the 4th gen from picking up the infection? I know you have said but how sure are you?

You will really help if you could answer this im devastated and convinced i have contracted HIV I dont know what i will do if i have it from on stupid night. I am all alone and have no one to talk to

Thanks

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Re: High risk exposure started pep Help
« Reply #24 on: November 14, 2019, 06:54:08 am »
Hiya,

Quote
Im very concerned about these lymph nodes giving me pain

The problem is lymph node swelling can occur for such a wide range of common issues as well as a few uncommon ones. It's a like telling me you stubbed your toe.
Instead of stressing about this or reading nonsense out of context online, simply go see your local doctor!

Quote
I feel i have to ask if you think that the 4th gen ag/ab antibody test at 4 1/2 weeks (2 days post pep) would have picked up the infection if the symptoms were due to seroconversion?

The adaptive immune response is the short answer.  In short, initial symptoms (if even noticed at all) are not caused by HIV itself, merely the immune response and more to the point antibodies response, during this seroconversion antibodies are already at detectable levels. So your weeks of symptoms so far have nothing to do with HIV as your result is negative, no matter what the end outcome will be

No most people don't even notice this stage, hence regardless of symptoms or lack of noticeable symptoms we tell people to test post any risk event and on a regular basis to know their HIV status.

Quote
convinced i have contracted HIV I dont know what i will do if i have it

From what I have witnessed you have been doing yourself more harm by reading stories online, and things out of context making your fear & anxiety worse for no good reason. Stop!

Here is the summary, you have a negative result so far and I do not expect your result to change. Test at the appropriate time to confirm that in the meantime try to relax, consider the testing as simply confirming your negative HIV status.

Quote
I dont know what i will do if i have it

Worst case scenario, Live a full, long and healthy life with treatment. I mean no crystal ball here you could get run over by a bus tomorrow but well treated HIV in a newbie from 2019 simply is not a barrier to a "normal" life. 

Jim

https://www.ncbi.nlm.nih.gov/books/NBK279396/
« Last Edit: November 14, 2019, 07:09:50 am by Jim Allen »
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Re: High risk exposure started pep Help
« Reply #25 on: November 14, 2019, 07:13:29 am »
I don't want to sound harsh but this is an HIV risk assessment & testing information community service run by a few volunteers.

You had a risk and should test. There is not much more I can add other than to rehash you should test when due.

Jim
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #26 on: November 14, 2019, 09:08:46 am »
Hi Jim,

Thanks for the response it has really helped. Also thanks for confirming that for me and what you have said does make sense.  I will take on board what you have said and try and keep calm until my confirmatory tests.

C.C


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Re: High risk exposure started pep Help
« Reply #27 on: November 14, 2019, 02:33:56 pm »
You're welcome
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #28 on: November 18, 2019, 04:42:40 am »
Hi,
For those that may be reading an update on my symptoms. Occasional headaches, generalised lymph node pain in all locations on and off elbows, behind knees, armpits, groin, back of neck under jaw the pain comes and goes every few minutes or so. Tonsils are still swollen not massive but still noticeable.
The pains in the back of my legs were due to a trapped nerve or nerve pain in my lower back radiating down both legs. Im seeing a chiropractor. The 21 pounds (1 1/2 stone) in weight i lost near the beginning has not gone back on its just stayed there.
I have seen far to many people turn poz on this forum with the same thing i have with the generilized lymph node issue so its very worrying. It wont go away.

I had a PCR RNA test at 11 days after pep day 42 post exposure - Negative. I understand pep may have driven the virus down to UD if i had been infected so may have wasted my money but i just wanted to know.

I had a 5th gen ag/ab test day 41, 5 1/2 weeks post exposure 1 1/2 weeks after pep it was negative. Im not going to get any real answer till 28 days past pep but i still feel the need to test.

I have a question about testing please

The 5th gen ag/ab lab test at day 23 was:
Ag - 0.156 COI
Ab - 0.0827 COI
Non reactive 0.177 COI

The 5th gen ag/ab lab test at day 41 was:
Ag - 0.189 COI
Ab - 0.0942 COI
Non reactive 0.211 COI

What is the COI? It seems to have gone up so does that mean that it will continue to go up until i test positive?

Thanks for your help



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Re: High risk exposure started pep Help
« Reply #29 on: November 18, 2019, 08:00:41 am »
Quote
It seems to have gone up so does that mean that it will continue to go up until i test positive?

Given the values and test type, COI would most likely be short for "cut-off index"

It's also sometimes called the "signal value". This number will fluctuate, it's not an indication that results are less or more detected. Example if you ran this test 10 times odds are you will have a slightly different number on each one. End of the day anything below the calibrated cut off point is simply background noise and the result equals a negative/non-reactive.

Stop wasting your money and time, live your life as normal and test with an approved HIV antibodies test 6 weeks after finishing PEP for a result, this result will rarely ever change. If you wish to confirm the result then retest at 3 months after finishing PEP.
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Re: High risk exposure started pep Help
« Reply #30 on: November 18, 2019, 09:52:29 am »
Ok thats good news. Thankyou

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Re: High risk exposure started pep Help
« Reply #31 on: November 18, 2019, 09:54:57 am »
You're welcome
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #32 on: November 24, 2019, 05:49:14 pm »
Hi

Just and update on symptoms for those that read tonsils still swollen give pain here and there in conjunction with the lymph node pains that come and go. Alot less frequent than before. I do think its on its way out then i suddenly get a bout of pain in elbows and armpit etc constant reminder i may have HIV its horrific. I been put on anti depressants now and i am alot more level headed about all this. If anyone is hugely struggling like i am i recommend it. It helped me first time in my life I've ever been on them.

Hi I have a question about testing. Im looking to do a PCR RNA test. Do you know how long the pep would affect the viral load for once pep has finished? When does the viral load start rising again roughly to be detected by a Hiv RNA test please?

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Re: High risk exposure started pep Help
« Reply #33 on: November 24, 2019, 05:51:42 pm »
I don't recommend VL testing for screening like you need, hence:

Quote
test with an approved HIV antibodies test 6 weeks after finishing PEP for a result, this result will rarely ever change.
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Re: High risk exposure started pep Help
« Reply #34 on: December 01, 2019, 12:08:36 am »
Hello,

Im back as I have a few questions I hope you can answer. Im still having pain in my occipital lymph nodes, armpit nodes and tonsils and very occasionally shoulder blade nodes. I have had enough of this pain its been 7weeks non stop.
Since finishing pep I have had really hot periods for hours i think os fever. I think Iím now seroconverting after pep.
I been having mild night sweats again.

The fact that i had all these symptoms 8 days or so after and it has not shown up as HIV on my 4th gen tests makes me think i could be coinfected with something and thats why its relentless and not going away and not showing up on earlier tests. I think i took the PEP to late and theres no getting out of this.
When I go to the doctors about this they just keep saying wait for your test results. It sounds like they are putting what i have got down to HIV and i guess will get me on ARVs to stop the symptoms.
Im having very bad suicidal thoughts now. Im not strong enough to live with a disease like this. Everyone else on poz.com seems to be brave and able to do it but i donít think i can. I have been looking back to that night with anger and regret i cant live with how stupid i was to put my health at risk like that. I was so healthy with a strong immune system and have probably ruined it all.  I cant even sleep properly because of whatever it is is giving me pain and discomfort and night sweats i even fear sleeping due to waking up with sweats and painful tonsils. I donít see anything else giving symptoms this long other than cancer so it has to be HIV
I cannot live my life as normal until i have an answer Iím not mentally strong enough.

If i do test positive i am really going to need a place like the positive sections on this forum to seek help as I am going to find it very hard to accept and continue my life. I donít want to come across offensive to others Iím just talking about me

My questions if you could be so kind to answer.

I was told 50% of infections would be picked up 2 weeks after pep with 4th gen Lab. is this correct?

I have a 4th gen Lab test booked for 4 weeks 1day post pep this tues 3rd dec. results will take around 3 days to come back. I have been told and read that this picks up 95% of infections. Do you agree with this? can i rest a bit easier after it if its negative?

I know you say 6 weeks but is that just being conservative for outliers? I will be testing then too.

Im sorry for the breakdown I hope you can be patient with me.  I know you donít know me as a person Im just really struggling every single day.




Offline Jim Allen

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Re: High risk exposure started pep Help
« Reply #35 on: December 01, 2019, 04:59:38 am »
Hiya,

Let me start with saying I fully expect you to be HIV negative if what you posted was your only exposure, and you finished the PEP course,  just test to simply confirm this.

Quote
Im having very bad suicidal thoughts now. Im not strong enough to live with a disease like this. Everyone else on poz.com seems to be brave and able to do it but i donít think i can.

I'm sorry to hear you're in so much pain. There are plenty of other people who have been there, and you shouldn't be afraid to reach out for help. Not to sound like a cliche but if you are feeling like this, then please do go and speak to your doctor or go to an A&E today and let them know you are having these thoughts so you can get some face to face support, I do hope you feel better soon.

Now I can't speak for everyone here but personally speaking I am certainly not brave, neither is it a matter of strength,  It's just that my experience and perspective is there are far worse things in life than a touch of HIV/AIDS that I have to live or deal with so as far as HIV goes I just get on with my life.

Quote
The fact that i had all these symptoms 8 days or so after and it has not shown up as HIV on my 4th gen tests makes me think i could be coinfected with something and thats why its relentless and not going away and not showing up on earlier tests. I think i took the PEP to late and theres no getting out of this.

First, you reported symptoms from day 5 post-exposure, worried it was HIV - This was too soon for it to be HIV regardless of your HIV status. For the rest of the month, you reported more symptoms yet at the end of the month, the negative test result meant this was not HIV related either.

Now you are focusing on symptoms again, stop focusing on symptoms and you have first-hand experienced that they are not reliable

Quote
When I go to the doctors about this they just keep saying wait for your test results.

This would be correct as the symptoms are not specific to HIV, the only way to know your HIV status is by testing at the appropriate time.

Quote

1)

I was told 50% of infections would be picked up 2 weeks after pep with 4th gen Lab. is this correct?

2)
I have a 4th gen Lab test booked for 4 weeks 1day post pep this tues 3rd dec. results will take around 3 days to come back. I have been told and read that this picks up 95% of infections.

2a) Do you agree with this? can i rest a bit easier after it if its negative?

3)
I know you say 6 weeks but is that just being conservative for outliers? I will be testing then too.

4)
Im sorry for the breakdown I hope you can be patient with me.  I know you donít know me as a person Im just really struggling every single day.

I've answered most of these questions before but I numbered them and will answer if it helps you.

Overall the testing guidelines we give here are generic, conservative and based on fitting the widest possible audience, although, as you took PEP out of caution the testing time is applied post finishing PEP.  Test at 6 weeks post finishing PEP with blood-drawn HIV antibodies, this result will rarely ever change.

1) Well, a true 2 weeks would be more speculation than fact, you are asking for my opinion.  I don't like guessing anyhow, my opinion based on everything I read and experienced would be it's more around the 25-30% mark.

2)
Well without PEP as a factor, the median time to have detectable levels is about 24- 28 days post-exposure and a "true" 4 weeks does provide high confidence with most estimates in the 90%+ range, median means some people take slightly longer and high confidence would be 6 weeks, hence retesting beyond 6 weeks for a definite result is more for "peace of mind" than anything else.

2a)
Any negative result at that point would be a good indicator

3)
Outliers I would consider anything between 6 weeks & 3 months either post-exposure or post finishing PEP when people are testing with 3rd gen or higher antibodies test through a blood-drawn antibodies test. Testing post 6 weeks is more peace of mind more than anything else for the average person testing without co-factors. 

4) Asked and answered, above.

Getting back to your risk assessment

PEP is highly effective so much so, that you should be thinking testing is simply to confirm your negative status instead of stressing or waiting for a reactive (positive) test response.   ;)

Best, Jim

« Last Edit: December 01, 2019, 05:34:53 am by Jim Allen »
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Offline concerned.chap1234

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Re: High risk exposure started pep Help
« Reply #36 on: December 01, 2019, 06:38:27 am »
Thanks for your kind words and patients Jim.
I have been to a mental health assessment team and they said they cant really help me until I have my results because they think Iím not really at risk unless i get a bad result. Which i suppose I did sort of say in the assesment. If it gets worse i will go to A&E which is also what they suggested.

Negative at 4 weeks post pep is a good indicator. I can work with that. Then its only 13  more days till the 6 week one. I just have to survive 2 weeks of this hell if its neg on the 4 week test. Thanks for clarifying it all.

Ok I will try not to focus on the symptoms. Its just broken me that its constant generalised pain from lymph nodes and tonsils. My mouth and throat look like a car crash happened in it. I spent the entire night awake last night prompting me to post Ive never been so scared in my entire life and feel like theres no one to help me its the worst. All professionals are turning me away until i get results

Thanks for taking the time and patience to respond to my heavy post i will re read it when im getting bad mentally again. After this is all over at the 3 month mark i will find a way to send you some money or something for your help whether its pos or neg.

I will return at 6 week and 3 months to let you know my results. Im not tight with money i will just pay the subscription to update.

Thanks again for your time Jim Im praying every day for negative results and I never have prayed before this

CC

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Re: High risk exposure started pep Help
« Reply #37 on: December 01, 2019, 06:42:48 am »
The other thing i forgot to add was i am also concerned that as the hiv test did not turn positive is that these symptoms could be from something that has caused co infection so im going to have all these symptoms from something else hepc or cmv or something and then have no symptoms from HIV then test positive.

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Re: High risk exposure started pep Help
« Reply #38 on: December 01, 2019, 06:58:50 am »
Hiya,

Quote
Thanks for your kind words and patients Jim.

You're welcome. I truly hope you do feel better soon and get back to living your life instead of focusing on this.


The other thing i forgot to add was i am also concerned that as the hiv test did not turn positive is that these symptoms could be from something that has caused co infection so im going to have all these symptoms from something else hepc or cmv or something and then have no symptoms from HIV then test positive.

Quote
ts just broken me that its constant generalised pain from lymph nodes and tonsils. My mouth and throat look like a car crash happened in it. I spent the entire night awake last night prompting me to post Ive never been so scared in my entire life and feel like theres no one to help me its the worst. All professionals are turning me away until i get results

Look all I know is these symptoms so far are not HIV related, regardless of the HIV outcome, and as said I strongly suspect the outcome will be HIV negative. Most of what you posted would be common to just about everything and nothing an all including the mind playing tricks or run of the mill common winter bugs or reoccurring strep in the throat. Not trying to dismiss you but you should see the lists of illnesses people who turn out to negative post about, it's mostly fear and over focusing on the body.

Try to relax and try to keep working with your GP

Quote
I have been to a mental health assessment team and they said they cant really help me until I have my results because they think Iím not really at risk unless i get a bad result. Which i suppose I did sort of say in the assesment. If it gets worse i will go to A&E which is also what they suggested.

Yeah, if you are having suicidal thoughts don't wait for the trigger to speak to someone face to face, go back if this gets worse or continues. 

Quote
Thanks for taking the time and patience to respond to my heavy post i will re read it when im getting bad mentally again. After this is all over at the 3 month mark i will find a way to send you some money or something for your help whether its pos or neg.

You're welcome. You have already donated to the forum with the paid subscription, if you do want to do more I personally would recommend the Terrence Higgins Trust who do fantastic work for people living with HIV, https://www.tht.org.uk/

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Re: High risk exposure started pep Help
« Reply #39 on: December 01, 2019, 07:18:21 am »
Yea I will try to get back to normal. I have spiralled into deep depression because of all of this. Its all my own stupid doing.
I will post updates from 4 week, 6 week and 3 month tests
I have had some dealings with THT getting advice etc and they have been very helpful i will look at contributing to there charity then.
Thanks
CC

 


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