Herpes Proctitis

[thirtysomething]

Hello-

I hope you guys are doing well. I need some help in understanding Herpes proctitis recurrences. I've had a really bad first episode of Herpes Proctitis in June  and my life was a living hell for weeks! I got Herpes from unprotected anal sex with a guy who did not disclose his Herpes status. I was at the receiving end during the intercourse. Soon after, I fell so sick and it felt like I'm going to die! After numerous visits to ER and my primary HIV physician, the swab culture result came back as positive for HSV-1. I had no blisters during this first episode but had a fissure and severe pain during bowel movements, It was like passing glass - not to mention blood and pus.

To make matters worse, the fissure caused secondary bacterial infection and it developed perianal abscess that had to be surgically drained. The abscess cut continued to drain for couple of weeks after the surgery and I still find difficult to sit (say, on a chair) for long period of time. My doctor says that the abscess cut is healing well and it will take couple of more months for it to completely heal. I, also, still have a lump, like an inch, below the abscess cut. My doctor is concerned that the lump may result in another abscess or I may get Fistula! (Fuck me :-()

I'm poz for over 5 years now, not on HIV meds,  and have never had any health issues due to HIV. As of my last bloodwork, CD4 were 810 and VL 570. I'll get results of my new bloodwork done in a week.  I'm currently taking Valtrex 500 mg twice a day as suppressive therapy for herpes.

This new Herpes infection has affected my lifestyle, confidence and my libido. I'm afraid to have sex again! And I'm extremely concerned about proctitis recurrence. I was told by my doctor that recurrence of HSV-1 proctitis is very rare, and that majority of people with Herpes Proctitis have HSV-2 herpes, though there are few cases (like mine) who have got proctitis due to HSV-1.

I feel like I would have dealt with cold sores (more common with hsv-1) much easier.  I'm not a good sucker anyway. But in my ass! Seriously?

I hope my CD4 and VL do not crash due to Herpes. My doctor wants to have a discussion with me about starting HIV meds. I'm not sure though if I should at this stage. I'm also a participant in a slow-progressor study for over a year now.

Has anyone experienced what I'm going through? I'm not able to find any good material online that talks in detail about Herpes Proctitis recurrence. I'm also afraid that I may have another episode after I stop Valtrex. Not to mention that my sexual life may become permanently non-existent! :-(

Any information shared is much appreciated.

Thanks -
  

Diagnosed March '06
CD4 fluctuations since diagnosis 750-1395
VL fluctuations Undetectable - 2000
CD4% fluctuations 32-48%
Not on HIV meds

[Ann]

Why would you stop the valtrex? Many people - including myself - take prophylactic acyclovir with no problems. I take 400mgs X2. If the cost is worrying you, you can get generic acyclovir - it's very inexpensive.

There is some evidence that taking prophylactic acyclovir helps to suppress hiv as well. I'm not sure if they've figured out why yet, but I have my own theory - simply that keeping herpes suppressed gives your body one less thing to be constantly fighting.

Usually, the first outbreak of herpes is the worst - I know mine was. Even if your subsequent outbreaks are milder, why take the chance when there is a good, virtually side-effect-free med out there that will stop you from having any? Also, when you're on acyclovir prophylaxis it greatly reduces the chance of you passing your herpes on.

Got a tip for you - while you're still healing, get yourself some babywipes and keep them in your bathroom. Your ass will thank you. Mine does! You have my empathy. Anal herpes are a pain in the ass in every sense of the phrase.

[next2u]

Why would you stop the valtrex? Many people - including myself - take prophylactic acyclovir with no problems. I take 400mgs X2. If the cost is worrying you, you can get generic acyclovir - it's very inexpensive.

There is some evidence that taking prophylactic acyclovir helps to suppress hiv as well. I'm not sure if they've figured out why yet, but I have my own theory - simply that keeping herpes suppressed gives your body one less thing to be constantly fighting.

Usually, the first outbreak of herpes is the worst - I know mine was. Even if your subsequent outbreaks are milder, why take the chance when there is a good, virtually side-effect-free med out there that will stop you from having any? Also, when you're on acyclovir prophylaxis it greatly reduces the chance of you passing your herpes on.

Got a tip for you - while you're still healing, get yourself some babywipes and keep them in your bathroom. Your ass will thank you. Mine does! You have my empathy. Anal herpes are a pain in the ass in every sense of the phrase.

baby wipes are essential!

best,
d

[Basquo]

Acyclovir is well-tolerated by all but a few people, and for those people, Valtrex is now generic 

[thirtysomething]

Hi Ann -

My doctor wants me to stop taking Valtrex after 3 months. He said that there is a fair chance of being drug- resistant to Valtrex if I continue it for a longer period. He suggests that after 3 months I take Valtrex only during episodic recurrences. I will talk to him again about this when I see him later this week.

Thanks for the baby wipes advice :-)

[Ann]

I've been taking acyclovir for around eight years, no resistance.

[Basquo]

I've read that resistance to acyclovir and Valtrex is rare. Why wait for an episode if you could prevent it altogether? The first year is the worst and it sounds like you don't want to go through  what you described again. Acyclovir twice a day, or Valtrex once a day, is a small price to pay for peace of ass.

[bocker3]

Hi Ann -

My doctor wants me to stop taking Valtrex after 3 months. He said that there is a fair chance of being drug- resistant to Valtrex if I continue it for a longer period. He suggests that after 3 months I take Valtrex only during episodic recurrences. I will talk to him again about this when I see him later this week.

Thanks for the baby wipes advice :-)

My doc argued the same thing.  He said that he was concerned that if I developed resistance, there would be nothing for me to use during subsequent flare ups.  I think his reluctance stemmed from having a patient that DID develop resistance.  I told him that, while I appreciated his concern, I was the one with the herpes on my ass and I wanted to take it to suppress outbreaks.
He wrote my Rx and I've been taking it for a couple of years now - NO OUTBREAKS since.  I take 500mg of Valtrex, twice a day (Valtrex is generic now too).

Mike

[thirtysomething]

Thanks for the advice, guys. I will talk to my doctor about continuing suppressive therapy. I definitely don't want to face the outbreak horror again!

[Ann]

Acyclovir is well-tolerated by all but a few people, and for those people, Valtrex is now generic 

(Valtrex is generic now too).

Thanks guys, it's good to know that Valtrex (valacyclovir) is now available as a generic.

I hesitated to start taking acyclovir prophylaxis for a couple years due to fears of becoming resistant, but I researched it and found that it's quite rare. I was getting outbreaks as often as two or three times a month and the relief that taking regular acyclovir has brought is priceless.

Thirty, in my opinion, stopping outbreaks - particularly in or around your anal area - is very important due to the very real possibility of getting a secondary bacterial infection, which is what happened to you. It happened to me once too, although not as bad as your infection.

The problem with taking the meds only when you have a recurrence is that unless you catch it VERY early, you will still get a blister, albeit possibly a smaller one than you would have had without the meds. The meds will only hurry the healing process along. This means that you will still end up with an open sore that can become infected with bacteria.