Question about anti-viral dosing

[H_is_for_Hope]

Hi..I'm new to posting on here, but have been reading through this forum a lot lately and feel like I have found a good place :). I have lots on my mind, but for now hoping to clear up some confusion on anti-virals. I am a 40-something female, have had HSV2 genitally for 27 years...but although the virus isn't new to me, I'm completely confused about the medication.

 

In the past, I've only used medication episodically for outbreaks. Sometimes (at the suggestion of my ob/gyn doctor) I would take the meds during certain weeks that I wanted to "avoid" outbreaks...like for a vacation. She kind of have me the impression that it was extremely unlikely to get an outbreak while taking the pills. By the way, I typically only get 1 or 2 outbreaks a year..almost 3 decades of having this, I never had a history of chronic outbreaks.

 

This past year I have been obsessing about H. So she suggested I start taking it daily as suppressive. I take one pill, 500mg valacyclovir per day. After 5 months of faithfully taking it daily, I had a super stressful week and developed very minor symptoms of an outbreak which devastated me because I was led to believe the medication would not allow me to have an outbreak. I do know that stress is a big trigger, and I guess I should mention that I am a high anxiety kind of girl, OCD personality, and hypochondriac tendencies. Once I noticed the symptoms (which I am checking everyday with a mirror like an obsessed crazy person) I took a 2nd pill for 3 days. In other words, for 3 days I took 2 pills spaced 12 hours apart. (One pill in morning and the other at evening). By the end of the 3rd day, the symptoms disappeared and the next day I went back to 1 pill per day.

 

Less than 3 weeks later, I had another bout of emotional stress (mostly relating to me being SO upset about the recent outbreak) and I got more mild symptoms of an outbreak. I doubled up on the pills for another 3 days and symptoms disappeared. Never in my life have I had a frequency of outbreaks like this...usually there would be AT LEAST 6 months between outbreaks. Other times in my life I would go a couple years without them. But I do realize that my emotional stress is the culprit.

 

Now, after reading lots of stuff on here and elsewhere, and after consulting an infectious disease doctor, I'm starting to understand that high stress will bring on symptoms, regardless of the medication. That fact is just starting to sink in.

 

But what I'm unclear about, because different doctors say different things..is the dosing. When I double up and take 2 pills per day, should I be taking them 12 hours apart or gulping both pills down at the same time. Does it matter? I just want to do what will work the best!

 

Also wanted to mention, I am married for almost 20 years, hubby tells me to stop worrying, stop obsessing about this but it is hard for me!

 

Sorry for long post and thanks for listening!

[whitedaisies]

Glad u finally posted. This is a great place.

 

Valtrex isn't the magic pill for all people. For me it doesn't work at all or maybe it does who knows.

 

Anyway u can still have OB even if u are taking it suppressively, they should be milder. A normal suppressive dosage is 500 mg two times a day (12 hours apart). So u are on a lower dose o suppressive therapy in my opinion. U could ask ur doctor to up ur prescription.

 

Ur best bet is to control ur stress. I know easier said than done but seems like that's ur major trigger. Maybe seeking therapy will help. I know it helped me.

 

Glad u have a supportive hubbie.

 

Hugs

[normalprofessional]

Welcome! It's nice to see another veteran on here! it gives the newbs hope!

I don't have advice on the meds, but just wanted to say it's helpful for me when I hear about others who have h and are in loving relationships!

Please stick around and offer your comments to the forum!

[Jayz]

Yes, it is nice to hear from a veteran. At the risk of hijacking the thread I'd like to ask a question: do you use condoms in addition to the antivirals you take?

 

I'm 55, newly diagnosed and in a committed relationship. I'm taking antivirals but hope there's a future of no condoms for us.

 

Thanks!

[whitedaisies]

I think dancer has answered this question....check thru her posts. I know she didn't use condoms. But she has had it for a while and knows her body. I would say the first year anti virals and condoms and then u can see how ur body is reacting to the virus. At least that's what dancer says. Lol

 

Hugs

[Jayz]

Right, well, I'm interested in anecdotal evidence since I've read the stats and the underlying studies are not really that thorough. Dancer and Adrial have both been in three-year relationships without condoms and not transmitted. I'm wondering if Hope has done the same, successfully, for a 20 year marriage. That would be extremely encouraging!

[whitedaisies]

Would be great to hear. Crossing my fingers for ya

[H_is_for_Hope]

I do think the meds work for me, whenever I take them for outbreaks, they clear the symptoms up quick and these recent episodes were very mild. I also believe the one pill daily is the proper regimen for people who get fewer than 6 outbreaks per year. So it seems right. I just want to know the proper way of increasing the dosage if I do get a problem or how to ward off a problem if I think I am having a stressful week.

 

As to answer the question about condoms. We used condoms in the beginning of marriage before having kids. After we had kids, hubby chose to get a vasectomy and did not want to use them anymore. So for the past 7 years or so no condoms. I only recently started taking the daily meds within the past year. I took them because I started obsessing about this virus (directly after an outbreak) and wanted to feel like I was "in control". To our knowledge, he has never caught this from me in all the years. He was always understanding about this from the beginning; but he is a laid back "no worry" person...the opposite of my personality :)

[WCSDancer2010]

@H_is_for_Hope

 

Hello and Welcome! And I have to say I LOVE your screen-name :)

 

I was led to believe the medication would not allow me to have an outbreak.

 

Well, as you have learned, the meds (like most medication) can only do so much ... and that you still need to take care of yourself which INCLUDES reducing stress and working on reducing your OCD tendencies around your fear of OB's ;)

 

So here is how *I* see it. When you first went to the Dr, everything you were doing up to that point was working just fine. I, like you, have had H forever (35 yrs for me) and only have one or 2 OB's/year. I tend to take it if I think I have an OB coming on and I'd take it if I was in a new relationship (as @whitedaisies said, I feel it's a good thing to take them for at least a year when we are first with someone until the relationship is on solid ground...and then re-visit how you both feel about it).

 

Anyway, IMO, the Dr fed into your OCD/hypochondriac tendencies by prescribing the antivirals as a suppressant rather than urging you to get some counseling to learn coping skills for the compulsion/control issues you have. I would urge you to get some help for that because I feel that learning how to let go of your angst and fear will do you FAR more good than any meds as far as getting the virus back under control. You said an OB triggered your OCD ... now you are in a vicious circle and you will do more good to deal with the compulsion issues than to try to beat it down with the meds ... you want to be "in control" of the virus? Get the OCD stuff under control, reduce your anxiety/fears/stress, and I bet it will go back to your normal 2x a year OB's (or LESS!). ;)

 

That said, yes, you have done the right thing with the dosage ... if you are already on the meds once a day and you have an OB, taking them 12 hrs apart is the smart thing to do for a few days to knock it back down. However, I would hope that given that you have done fine all these years without them, that over time you will be able to go back to using them to control impending OB's and for "special times" that you want to make sure to not have an OB.

 

You might want to get your hubby tested too. He may well be an asymptomatic carrier in which case, you have no worries as you can't give him *more* of it anyway ;)

 

(((HUGS)))

[H_is_for_Hope]

Thank you so much to all of you...I have so much to say and plan on sticking on around and posting some stuff as time goes on.

 

@WCSDancer2010

Thank you for the pep talk and yes I completely agree that I need to get my emotional stress/OCD/anxiety under control. My mother says the same thing to me all the time. This is easier said than done :) because I have been this way my whole life. My hypochondriac tendencies make having H very challenging for me because I naturally pay LOTS of attention to every single sensation I feel in my body. I am probably aware of and feel things that the average person would not even notice. For instance, every little itch makes me paranoid thinking that it is H. Now, my rational logical part of my mind is smart enough to know that every single itch and tingle could not possibly be H. Sometimes it is probably nothing at all or sometimes it could be psychosomatic...if you concentrate on a body part hard enough you will "feel" things. But I always think "what if" it is H...I should avoid sex. And what happens is I start to live in fear of my body.

 

You said this above: "I would hope that given that you have done fine all these years without them, that over time you will be able to go back to using them to control impending OB's and for "special times" that you want to make sure to not have an OB."

 

Okay so this is part of my current confusion. My ob/gyn over the years had always advised that if I want to avoid an OB for a particular or special week (like a vacation for example) that I could simply take the antivirals for that week and I wouldn't have to worry. Based on your statement above, I am assuming you agree with this protocol?

 

I really want to believe this is true but recently I have come across conflicting information and I just don't know what is correct anymore. For instance, the infectious disease doctor I talked to gave me the impression that taking the meds here and there for one week or so in that fashion does not really offer protection. Also I think I might have read on the Westover site somewhere that it takes approximately 5 days of daily meds to start suppressing the virus and to protect your partner. So based on that, I would think that if a person wanted to avoid H problems on a vacation, that starting the meds at least 5 days beforehand would be the thing to do? I want to believe that I can control the virus for special times like that, but just want to make sure that I understand correctly and wondering if anyone on here has experience with that. Maybe the infectious disease doctor was wrong or I misunderstood the way he explained. For now, I do feel comforted knowing that the daily meds are minimizing any shedding as much as possible.

 

I have also read so many things on the internet about people not having any outbreaks while taking suppressive antivirals daily. My ob/gyn also claims that she has patients that have been on the meds for over 10 years with zero outbreaks. I think this is why I was so disappointed that I had breakthrough symptoms while only taking the meds for 5 months. I felt like the floor was pulled out from underneath me and that the meds were failing me. But now it is slowly sinking in that stress can still trigger problems even while on the meds. Also, I have a bit of a theory....perhaps these people that claim they are having ZERO outbreaks while taking antivirals are actually having symptoms occasionally but they are not aware of them.

 

Again thank you to all who responded in here...you will be hearing more from me! xoxo

 

[WCSDancer2010]

@H_is_for_Hope

 

So let me pose this to you ... why not let Herpes teach you how to deal with your OCD/hypochondria, rather than letting your OCD/Hypochondria run your fears about Herpes? Simply put, instead of worrying and twitching at every little thing, sit with it, but don't play into it, don't grab the mirror, etc. Yes, occasionally one of those twinges will become an OB ... but then you will know which ones are the "real" ones. Does that make sense? Of course I would say you should get help/counseling to guide you through that. I'm just saying that perhaps you can use Herpes to help you with your anxiety disorders.

 

Yes, I personally only take the meds when I feel an OB coming on ... right now I don't have a partner and I very very rarely have an OB so I don't take it for anything else. If I was in a relationship I'd also take it if I knew I was going to be under a lot of stress (travel used to trigger me).

 

Yes - it takes 5-10 days to get enough of the meds into your body.

 

I have also read so many things on the internet about people not having any outbreaks while taking suppressive antivirals daily. My ob/gyn also claims that she has patients that have been on the meds for over 10 years with zero outbreaks.

 

Well yes, and tylenol works for some people and not for others. And if you increase your stress to a high enough level then H will break through no matter what. They are called a "supressant" .. NOT an "cure" or "eliminating" drug .... it helps the body to gain control .... it doesn't control it. Understand? And those people who say they are having zero OB's likely are ... now, they are likely still shedding, but the meds are helping them to cut it down to such a low level that most of their partner's immune systems are capable of dealing with it so that it doesn't manage to get into their system. ;)

 

(((HUGS)))

[H_is_for_Hope]

Thank you so much...I do understand everything you are saying. I truly appreciate your time and attention as so many others I am sure appreciate on here as well.

 

I am in a very bad place emotionally with this right now. I know I will eventually be ok but I have to work through this.

 

Most of the times that I have had outbreaks, they are usually in the anal area and can be confused easily with hemorroids. It took me years to figure out that they were outbreaks. And being that I do have ongoing problems with real hemorroids, I am constantly worried because I frequently have discomfort in that area. I guess it is obvious when it actually IS an outbreak but every itch or tenderness in that area makes me nervous. Sometimes (rarely though) I have had outbreak symptoms on the outer left labia but like I said MOST of the time it is in the anal region, and always on the left side of my body. Now today I am feeling this itchy red area in the crease of the back of my thigh where my butt cheek meets my leg. Never have I been aware of an outbreak in that spot, I have no idea if this is just irritation from underwear rubbing or whatever. But this is what makes me insane...even if the irritation goes away, how do I know if it was H. And now because of this irritation I feel like I should avoid sex again. I keep reading on here on how EVERY and ANY symptom down there *CAN* be H...so it's like every symptom makes me crazy. It's like the more I read about it, the worse I become. Ten years ago if I had this same itchy feeling in the crease of the back of my thigh I never would have suspected H. Now EVERYTHING makes me suspicious and I don't know what to think. :( It is on the right side of my body, and all other outbreaks in past were on left, but not sure if that even matters.

[WCSDancer2010]

So you say you are 40-something and you've had this 27 yrs so you've had it most of your sexual life...yes? And you just said that TEN years ago if you had a itch on the back of the thigh you wouldn't think about it...yes? You've managed it in your marriage for 20 years effectively. Yes?

 

So really, you pretty much know your body and how H affects it and where your OB's are. So this is not about H - it's about your need to learn to control your thoughts and fears brought on by the OCD/hypochondria... yes???

 

I strongly urge you go get help for THAT - go to someone who specializes in those 2 areas ... because you need someone to help you to learn coping skills for your over-active thinker .... how to quiet the chatter and fear. How to realistically live in your body and not let every little itch and tingle run your life and your thoughts. I think that if you can do that, you will find a lot of the sensations go away and the rest won't send you into a spiral of fear and dread... ;)

 

(((HUGS)))

[H_is_for_Hope]

Oh if I could give you a hug I would!! Dancer you make such perfect sense, these are the words I need to hear. I can't thank you enough.

 

Yes, I have had this for my ENTIRE sexual life. I got it when I was 16 from an older guy who forced himself on me. (I was a virgin).

 

Last night I kept looking at this itchy spot over and over. I thought I saw a little bump there but it was so very hard to see. There is a hair right next to that spot and hubby kept saying it was probably just irritated because maybe that hair was trying to become ingrown or something like that. No soreness or anything either. And he kept saying "You have never had an issue in that area of skin before..it's nothing."

 

This morning it is still itchy but when I look at it, the skin is totally normal! Whatever bump was there last night is gone. So of course my mind thinks, well it is the meds that are clearing it up. But of course there is the possibility that it is not H to begin with!

 

I would love to get therapy from a professional that specializes in hypochondria and that also is knowledgable about H. But how to find such a person? Several years ago I was on zoloft for anxiety. I know I probably should go back on that too.

 

I just can't thank you enough, because my fear was that after describing these symptoms, that someone on here would say "well yeah that sounds like H, you should be careful, get it swabbed", etc. But what you say makes sense, I have had this for almost 3 decades and I guess it would be extremely odd for me to get symptoms in a spot that I never had a problem with before.

 

After looking at this over and over last night and hubby saying it was nothing I said, "Oh you would have sex with me now??" And he was like "YES let's do it" and I said "omg you are CRAZY!!" But really I am clearly the crazy one :)

[WCSDancer2010]

Odds are you won't find anyone who also specialized in hypochondria... but that doesn't matter. They will help you to learn how to stop the obsession about the Herpes ... which is all you need to work on ;)

 

After looking at this over and over last night and hubby saying it was nothing I said, "Oh you would have sex with me now??" And he was like "YES let's do it" and I said "omg you are CRAZY!!" But really I am clearly the crazy one

 

I hope you had outrageously hot sex last night. AND, there will ALWAYS be a risk. But your hubby knows that AND HE DOESN'T CARE! Lucky You!!!!

[whitedaisies]

Exactly!!!!

[Lady_j988]

What is a asymptomatic carrier, do they still have outbreaks and can they pass it to others?

[H_is_for_Hope]

@Lady_j988

 

An asymptomatic carrier is someone who has tested positive for the virus but has not had any outbreaks yet (or they have outbreaks that they aren't aware of). And yes they can pass on the virus through shedding just like anyone else.

[Jayz]

Actually an asymptomatic carrier may not have even tested positive - they may have no idea they are a carrier.

 

Studies suggest that of the people that are infected with HSV-2, 90% of them don't know it!

[Lady_j988]

Thanks for the feedback, I was told there are people who carry the virus but will never have an outbreak, is that true. And what's a dental dam or jam.sorry for all the questions. I don't see my on gym until Monday morning

[Lady_j988]

Wow, so @ jayz, your saying one can be asymptomatic carrier and not even test positive for herpes but can still transfer it to others

[Jayz]

No, I didn't mean they'd test negative. I meant they've never had a test at all and have no idea they might have it because they've never bad symptoms (or more likely, the symptoms have been so mild they haven't noticed them).

[WCSDancer2010]

Lady_j988

 

What is a asymptomatic carrier, do they still have outbreaks and can they pass it to others?

 

Asymptomatic means "no symptoms". The H virus is sneaky and can hide and not show symptoms for DECADES ... the problem is, as mentioned, because of the policy of the CDC, most people are not tested (and most believe they HAVE been tested) so 80% of those with Herpes are unaware they have it. The VAST majority of new cases are from someone who either didn't know they had H or who believed they couldn't pass it on without an OB.

 

Anything can trigger someone who is asymptomatic to have an OB - I have a client who has been married 30+ years who just had her first OB after a stressful holiday season.

 

A dental dam is a thin piece of plastic like saran wrap (some people just use saran wrap) that they use for oral sex - the put it between their mouth and the womans vagina to prevent passing HSV and HIV during oral sex.

[Lady_j988]

The doctor I spoke to on Friday told me I didn't pass it to my boyfriend in the 3 years we were together and never ever used a condom.she told me the reason he didn't catch it because I didn't have an outbreak. And I have a cousin who has it and she doesn't tell her partners, she just uses a condom.i asked her why not and she said because there not at risk. So your telling me that's not correct dancer

[WCSDancer2010]

Yes I'm telling you that's not correct and that you both just got lucky. The CDC talks about Asymptomatic shedding and how most is most commonly occurs from a partner who does not have a visable sore. (see below). You may want to print that out and highlight/underline that for your Doctor next time you see them...and condoms only give you a 50% reduction of risk - a lot will depend on where your OB's (and thus your main asymptomatic shedding) are with condoms... if you get an OB in the crotch where it's not covered, the condom won't protect you ... so I would print out the CDC and Handouts for your cousin and pass them on too ...

 

Sooo much incorrect information being put out there.... ugh!!!!

 

Handouts + disclosure e-book:

http://eepurl.com/b4IPP

 

http://www.cdc.gov/std/Herpes/STDFact-Herpes-detailed.htm

 

How do people get genital herpes?

 

Infections are transmitted through contact with lesions, mucosal surfaces, genital secretions, or oral secretions. HSV-1 and HSV-2 can also be shed from skin that looks normal. In persons with asymptomatic HSV-2 infections, genital HSV shedding occurs on 10% of days, and on most of those days the person has no signs or symptoms. [4] Generally, a person can only get HSV-2 infection during sexual contact with someone who has a genital HSV-2 infection. Transmission most commonly occurs from an infected partner who does not have a visible sore and may not know that he or she is infected. [5]