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Avatar universal

Scared after PEP

Hi Dr,

Just to get you up to speed Im the guy from Edinburgh who posted the other day on your practice forum regarding the exposure in Singapore with a CSW.  Ive moved my question from the one at your practice as my last post regarding the Multiplex got erased.  I managed to briefly read it, however when I went back to read it correctly it had gone so I never really got the benefit.  
In your post you mentioned that the Multiplex has a lower level detection limit of 20 copies/ml?? If PEP had failed me the virus have been supressed  to such an undetectable level at 10 days post PEP 38 post exp? I have tried to find info on the Multiplex and how good it would be in my situation but all I can see is things that scare me like RNA tests will be affected by PEP and miss the infection as the virus is supressed! Im suffering terribly from anxiety here as you can tell!

The swollen Nodes I have by my left ear, Im trying hard not to poke although Im pretty confident they are nodes, the first pea size just bellow my ear and the second bean size by the jaw hinge,this one is tender and can be uncomfortable to eat (Ive never had these).  If these were related to HIV and PEP had failed then this would be a reaction to the infection thus yeilding a positive multiplex result... and even the P24 part of the Duo I had on completion of PEP 30 days post exp showing positive as the nodes along with the other symptoms (itching, Rashing, loose stools) I had were present before  then.  What Im getting at is if any sympoms I have had previous and at the time of the DUO and Multiplex were due to HIV and the PEP had failed they would have come back +.
Im so anxious im just looking for some reassurance, Ive read your recent post HIV and HEP C  to the other fellow who had an exposure in London with another male and Is now in hospital with other problems,you are very confident he does not have HIV as he had a negative DUO post PEP.
I hope you have this confidence with me!

Regards

11 Responses
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936016 tn?1332765604
MEDICAL PROFESSIONAL
Hello,

Firstly, and with the greatest respect to your good self, our Freedomhealth Forum makes it plain that you will receive 2 replies - you posted 5 times and had three replies. The final post was deleted because frankly, you were beginning to abuse the system.

In addition, I did answer your questions very fully in the original posting on the Freedomhealth Forum.

I'm going to repeat them in order here for you and then if there is anything that you think I have missed, then please draw my attention to it and I will try and answer it. Remember though that asking the same question over and over again will result in the same answer.




Your questions / posts are given first with my answers following.

Q1

Hello Dr's firstly Id like to congratulate on all the good you do... what a wonderful forum!

MY problem is.. I had a condom failure with a Filipino Sex worker in Singapore. I started PEP, Combivar and Kaletra around 15 hours later and Completed the course. When i got back to the uk I was told PEP would not have been strongly advised, as it was unknown if the female had HIV and the philipines has a very low rate of HIV even in CSW.

My baseline HIV test was negative, I was then tested for Chlamydia, Gon, Syphilis and HIV (4th Gen) at 24 days exposure all neg. On completion of PEP 30 days post exposure....I was retested for HIV using the DUO at a private clinic as the NHS aren't due to test me until 6 weeks post PEP. This was also Negative.

The symptoms I have had have been, loose stools ( I put this down to the PEP) I have also had to bouts of a few days of itchy skin, however Im hoping this is the medication or simple winter itch! I have never seem to had a fever or sever sore throat or whole body rash... ( I have had small patches of rashing come and go after say 30 mins max on my chest but I think they might be simple heat rashes or anxiety!!!

My main worry is I have a possibly 2 swollen nodes under my left ear by the Jaw line.... this came mid PEP, went and has returned again.... should I be worried about this????

In your honest opinion do you think there is a chance my post PEP negative could turn Positive? Baring in mind the negative DUO completion on of PEP, normal Liver function tests and lack of the negative results for the other STI's. I had a Multiplex HIV/HEP test done last thursday sent to TDL and I'm currently waiting on results (worried why its taking so long but im hoping its with the festive period).... hopefully you will be of the opinion this will most likely be negative!

Any help on the matter would be much appreciated!

ANS 1  ""I think taking PEP post condom failure with a sex worker in the Philipines was the correct approach. We all take slightly different views but mine would be to take it. I agree though that the assessment that the risk was overall low is correct.

The combination you took is fine and established.

Logically, - though you should note that this is not the same as scientific evidence - if the PEP were to fail and you were contaminated with HIV during the episode then I would expect your HIV DUO to be returned as a positive. The fact that it was negative is hopeful.

I wouldn't read anything negative into the delay with the TDL Multiplex - the tests are sent to a central lab in Europe for processing - snow at either end, flight delays, bank holidays etc all interfere slightly. If that comes back as negative - as I believe is likely - then that bodes very well. However, because of the uncertainties as to whether you were exposed or not in the first place; the uncertainty regarding the action of PEP on the amount of virus etc then you will still need further testing and I'm afraid the UK Guidelines recommend testing at 4 months post PEP""

Q2

Thanks for the swift reply!..... I just hope all is well wit hthe Multiplex then... I read further back in the forum that you have never seen a Duo performed straight after PEP turn from negetive to positive so Im hopeful I wont be the first!!!! I hope you agree I most likely wont be.
Just finally do you think my syptoms sound typical of HIV or are maybe due to stress and the effects of PEP. Also for your info all my tests have including the Multiplex have been carried out back home in Edinburgh.
I have everything crossed I am fine! and the delay in the multiplex is due to it being sent over new year!..... I really thought after the Duo and the all clear from the common STD'd's along with the fact theres only approx 3000 HIV pos women in a country of 45million women with a prevelence of less than 0.2% in CSW Id have gotten lucky! Possibly not Im thinking now! I cant take this wait!!!!

ANS 2"""No problem at all. You are right to say that where we have taken a DUO immediately or shortly after completion of PEP we have not then seen a change from a negative to a positive except where there has been another exposure in the interval where we have been able to firmly identify the other exposure as being the cause.

I think on balance all will be well. The lab have told us that we should have our multiplexes from this week back this week so hopefully you will be out of your misery soon"""

Q3

Dr Sean,

Thankyou once agian! This forum you provide really is a blessing and your sesible, direct, frank and clearly caring advice is very much appreaciated!

Im very encouraged by the fact you have never had a duo turn positive after pep as you must have been involved with this many times even with definate exposures. I will keep everything crossed in hope as I have had zero sexual contact since so any change in status will be from my mishap!

Heres hoping I get the good news soon! I wont take up anymore of what must be a very busy day for you!Ill let you know how i get on.

Q4

Dr Sean,

Goon news my Multiplex returned today negative for everything.... I understand I still have to test out to 3 monts after PEP, but what do you think the chances of this Negetive changing to Positive, On the basis Ive now had a DUO on 1 Day post PEP and the Multiplex 10 days post PEP? Would a another DUO say at 4 week make things near 100% or am I almost there as it is in your experience.

Also one last thing... regarding other STD's Ill get a full check at 3 months agian just to be sure but do you think Im pretty much covered with the Multiplex 38 days post exposure (10 post PEP), HIV DUO, Syph, Gon and Chlam at 24 days post exposure.

Once again any help would be much appreciated

ANS 3 / 4 """""Excellent news!

I think it will be highly unlikely that you have a positive result ultimately although as you say, you will need to wait until the final test.

The other tests are all easily fine - you don't need to retest for those.

Let us know the ultimate result"""""

Best regards, Sean
Helpful - 1
Avatar universal
Hello Dr's just a small update.... Im now at 13 weeks post exposure and 9 weeks post PEP.  I have followed up my Multiplex (10 days Post PEP) and Duo (1 day Post PEP) with 2 rapid tests that a bought from a Pharmacy in Singapore.

My works nurse performed the test correctly and they are the  EZ-TRUSTâ„¢ Rapid Anti-HIV (1&2) Test made by CS innovation in Singapore.  Both of these tests came back as Negative.  Can I rely on these test kits? I've noticed they are on sale as home test kits on-line in the UK but obviously they aren't approved as home testing is not approved.  They are however on the  USAID List of Approved HIV/AIDS Rapid Test Kits.

I will get a final DUO in 3 weeks time which will be 4 months post PEP, but I'm hoping that the chances the result will change will be zero theoretically?

Thanks
Helpful - 0
Avatar universal
Hey Doc... Staying calm hasnt been easy and Im going out of my mind... The node swelling is still present with one the size of a pea and the other the size of a kidney bean. Im also now getting some pain in my jaw on the same side and some days I have a dull ache behind my knees and in my elbows... this comes and go's.   Im going to get a duo test next week as I just want this to be over with now... I am resigned to the fact my result will be positive.
Guess Im one of the unlucky ones!!!
Helpful - 0
Avatar universal
Thanks DR Cummings,

Ill do my best to stay calm and wait for the correct interval which is 3 months post PEP correct? If it wasnt for these damn lumps Id be fine im sure! As my chances are so low with the Phillipines having suce a low prevelence and my taking of PEP.  I just hope the Ultrasensitive RNA at 10 days will keep me calm and stay neg!!!!!

I have eveyrthing crossed and I'll let you know how I get on.
Helpful - 0
936016 tn?1332765604
MEDICAL PROFESSIONAL
Hmmm...I can't really think of anything except to say that I think the tests you have had bode very well indeed and I would anticipate a negative result ultimately. I know its easy for me to say from the comfort of my office but it is waht I believe. Its a tough one for you though.

The other option is to have a further HIV DUO etc which will be more reassuring - you'll realise though that this is still not conclusive I'm afraid.

very best as always, Sean
Helpful - 0
Avatar universal
Hi Doctor,

Sorry for the post again... the Nodes in my neck have flared up again.  I have a mall pea like one in the soft tissue of the neck bellow my ear then a larger hard lump right on the main neck muscle right bellow it.  They have been hangining around since mid december.  Im struggling to get throught to the required testing period and really worried the node is a sign of PEP and my HIV Multiplex at 10 days post PEP and DUO 2 days post PEP were false negetives even though the nodes were present at the time.
Is there anything I can do to to help me keep rational until the required testing period and do these nodes sound HIV related?
Helpful - 0
Avatar universal
Small question, not regarding my exposure just something that ive tought off since I had my scary moment! ( you'll be plesed to know my anxiety has faded and Im confident in my 10 PCR and 1 day Duo on PEP completion remening negitive)

Anyway Im registered for organ dontaing. Now say for instance I got my PEP from a private clinic... possibly under an alias like Im sure lots of people do.  Now say I got ran over sometime in the first few weeks on completing  PEP.... I read that the HIV PCR RNA is the test used for testing blood donations.  How do the health service know for sure my Organs/Blood  are free from HIV and not just supressed by PEP as they obviously dont know I have taken this???
This is all hypothetical but its just something ive been thinking about...
Helpful - 0
Avatar universal
hi sir
im 18 yrs old from a 3rd world country.we do not have credit card here(it is not allowed by government).how can i ask you a question about my hiv concern.im dying everyday from stress.for sake of humanity be kind and help me please im crying every day i cannot tell anyone because of cultural problems here can you please help in some way?is there any way for me to post you a question?for sake of humanity dont make me disappointed.
Helpful - 0
Avatar universal
Dr Cummings,

Perfect, has helped clear up my queries... I promise to refrain from any more posting unless something significant happens! Ths post has cleard up my doubts.

I'll try my best to stay confident that everything will be fine, reading between the lines if I were your patient Im thinking you'd be confident everything will be fine in the end.

Cheers
Helpful - 0
936016 tn?1332765604
MEDICAL PROFESSIONAL
Hello again,

I do understand the level of anxiety - but, the chances of you meeting an HIV positive female sex worker in Singapore is low; the chances of you then acquiring HIV from her is also low; you took very appropriate action to minimise any chance of infection by using PEP; you had two negative tests after taking PEP - one of which was a highly sensitive RNA test for HIV which will pick up around 20 copies per ml of blood.

If you were to be HIV positive with PEP failing, then I would expect HIV vbirus to be suppressed during the PEP BUT for you to have viral rebound with hundreds of thousands of copies of virus detectable at 10 days. Thats what I would expect - but, the data on this is lacking/extremely limited/in progress of collection, hence my not being able to say with any certainty what your circumstances will be. But that said, our personal experience at Freedomhealth of doing lots of post-PEP testing is that if you have a negative test to begin, shortly after completing PEP then so far, we have not had a negative turn into a positive at a later date.

Does that help?

best wishes, Sean
Helpful - 0
Avatar universal
Hello Doctor,

Sorry for the confusion and hassle but I think the question on here and my new thread that you replied to but disseppeard or FH is very much different to the ones you have repeated, They are not the the one that was erased.
If you recall I started a new thread as the one you have posted was closed (rightly).  The second thread that was like the quesion Medhelp above and related more to the Multiplex and DUO and to whether "IF"my Nodes and symptoms were to have been related to HIV would they have returned +.  All I was looking for was some reassurance and more info in regarding the testing and what the chances were that HIV would be supressed to an undetectable level that the DUO at completion of PEP and the Multiple 10 days after would miss it, Im sure you mentioned something regarding 20 copies/ml but as i say I cant recall.
I feel I had a valid point to ask these questons, yes maybe Im looking to ease my anxiety but as I say the first and only reply you gave to my thread was erased for unknown reasons as you did write a full reply regaring the Multiplex and my nodes I just never had time to read it, or reply.  
The reason I moved to hear is I thought you were maybe having some problems with the forum.
Anyway sorry for the confusion and hassle hopefully if you agree my post on here asks different questions than the ones repeated from freedom health and you can possibly shed some light.  Admitadly yes some are similar and obvioulsy yes Im anxious but Im doing my best here.

Regards
Helpful - 0

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