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Still have outbreaks on suppressive therapy

Hi,

I have a question relevant to people who, like me,still have some outbreaks on suppressive therapy.

If we are still having outbreaks on suppressive therapy does this mean that the drug is not working as effectively as in those people in which suppressive therapy greatly reduces outbreaks?

Furthermore, if we still have outbreaks on suppressive therapy does this mean that the drug might not be reducing asymptomatic shedding between outbreaks at the same rate it would in somebody for which it prevented outbreaks?

Are the quoted figures for reductions in transmission risk still relevant for somebody who continues to have outbreaks while on suppressive therapy?
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Avatar universal
hi grace (meant to tag you above), I'm curious what your condition ended up being? was it a certain kind of fungal infection?  I have a feeling that I might have been misdiagnosed by my PCP for hsv-1 as well. I've tried valcylovir by occurrence and suppressive therapy (current) over the past year. I still constantly get flare-ups (about 5 per month). it's usually just one red "bump" at a time and there's no tingling sensation or pain.  However, the treatment does keep the bumps relatively small and tends to resolve within 5 days.  
I have an appt with a derm in 2 weeks, which will seem like forever, but I'm just wondering if this sounds familiar and if you might've had a similar occurrence, so I can possibly look for a treatment.
Thanks.
Helpful - 0
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I am also going through the same thing as some of you are, but a blood test confirmed I have HSV-1. I just found out and I just started meds about 2 weeks ago. Problem is I have been on meds (400mgs 3x a day for 5 days) and I am still getting new sores. They heal within 1-2 days but am still getting them. My doctor said it is unusual to get new sores while on meds and has referred me to a dermatologist as well to see what I can do going forward. Any help/ advice would be appreciated.
Avatar universal
hi Duey, I'm curious what your condition ended up being? was it a certain kind of fungal infection?  I have a feeling that I might have been misdiagnosed by my PCP for hsv-1 as well. I've tried valcylovir by occurrence and suppressive therapy (current) over the past year. I still constantly get flare-ups (about 5 per month). it's usually just one red "bump" at a time and there's no tingling sensation or pain.  However, the treatment does keep the bumps relatively small and tends to resolve within 5 days.  
I have an appt with a derm in 2 weeks, which will seem like forever, but I'm just wondering if this sounds familiar and if you might've had a similar occurrence, so I can possibly look for a treatment.
Thanks.
Helpful - 0
101028 tn?1419603004
duey did all my work for me :)  
Helpful - 0
Avatar universal
Any questions you have regarding the IGG blood tests and cultures, Grace can certainly answer.  I just answered because I went through hell and back after a doctor carelessly misdiagnosed me by doing a visual inspection.  So I just wanted to offer my input and support what Grace says about visual diagnoses being inaccurate, especially when the symptoms you seem to describe sound atypical for herpes.

Take care and keep us posted!
Helpful - 0
Avatar universal
Like Grace said, within 48 hours of the onset of your symptoms (your rash) go see a doctor that specializes in STD's and see what they think regarding your first doctor's diagnosis.  If you aren't blistering and experiencing weeping sores or ulcerations there won't be much to take a culture from (that's what my doctor said when she took my swab since I wasn't and haven't experienced any of those things).  Nonetheless, it doesn't hurt to ask and I still had one done for my peace of mind.

As for your IGG blood tests, if you are 4 months post last possible exposure, you would be okay to test.  Make sure it is a type specific test though.  As for the different types of tests you can take (i.e. test providers), Grace is your best source of information on that one.

I wish you all the best!
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Avatar universal
Do I need to do a culture. Would an antibody test not be conclusive?

Given the symptoms started and the visual diagnosis was 6 months ago, I would imagine IGG antibodies would be present?
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Avatar universal
Grace, correct me if I'm wrong.

Stevie, you can't be visually diagnosed with herpes when you don't have a typical presentation of the virus in the first place.  I had a doctor do this to me as well, and let me just say I have wasted the last year of my life with endless worrying and stress.

I, like you, just had a red rash on the glans and foreskin and a doctor made a quick assumption that I had herpes and prescribed me acyclovir and sent me on my way.  This started me on a path of seeing STD specialists and doctor after doctor, only to be told I didn't actually have herpes, but I just couldn't believe them.  I couldn't even believe my first IGG blood test or swab...so I went to have another 6 months post last possible exposure.

I'm all clear!  It was never herpes, but a fungal rash that responds to various antifungal creams.

Get a second opinion from another doctor, and do as Grace says...culture the next rash (doesn't sound like a lesion) and get a type specific IGG blood test to know your status.

All the best!
Helpful - 0
Avatar universal
Okay well I will make sure to do that but like I said I am pretty sure I do have herpes and most other things can be ruled out.

But in general is somebody who has more outbreaks whilst on suppressive therapy more infectious to a partner than somebody who doesnt have any outbreaks? (assuming abstinence during outbreaks)
Helpful - 0
101028 tn?1419603004
oh no, just a visual diagnosis? that is so inaccurate :(

at this point, be seen within 48 hours of your next recurrence. insist on a lesion culture and typing. also you can seek out a type specific herpes igg blood test to see what your status is too.

more people do not have any dietary triggers for genital herpes. the lysine/arginine theory was disproven a long time ago but many sites still tout it as being something accurate :(  

is it likely you are having monthly herpes recurrences while on suppressive therapy? no it is not.
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Avatar universal
Sorry I made an error. I meant 400mg.

I have been taking the recommended dose of 400mg twice a day.

Haven't got anything cultured, just had the initial outbreak diagnosed visually as herpes by a doctor.

Initial outbreak responded well to herpes medication and subsequent outbreaks tend to be correlated with the normal herpes triggers. My biggest outbreak was after I ate a giant tub of chilli coated peanuts lol

I am negative for all other STD's

maybe i need to look into the possibility of a fungal infection then alongside the herpes. would herpes increase the likelihood of a fungal infection?
Helpful - 0
101028 tn?1419603004
suppressive therapy with acyclovir is either 400mg twice a day or 200mg 3 times a day. you aren't taking the right dose!

are you getting these monthly symptoms cultured? if not, you should.  usually this is irritation or a fungal infection, not herpes. was your initial diagnosis a lesion culture of symptoms?
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Avatar universal
I have been taking 200mg  generic Acyclovir twice a day recently

Before that I took Valtrex once a day but I could feel myself having a reaction to it so I moved on to Acyclovir.

I seem to have recurrences quite frequently at least once per month.

I have very mild outbreaks, no pain or itching or not even open blisters. Just some some rash around the glans. Even my initial outbreak was very mild.

So the only real issue for me is preventing spreading the infection which is why I was hoping to get some answers for the questions above.

It's just it seems to be that more often than not there is something going on down there
Helpful - 0
101028 tn?1419603004
you will still have recurrences while on suppressive therapy.  

how often are you having recurrences?  what dose of suppressive therapy are you taking?

grace
Helpful - 0
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