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Cammie123

Is anyone having this symptom??

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Cammie123

Hello,

I originally put this under the newly diagnosed heading but I think the it should have been under this one. Is anyone having this type of problem?

I was diagnosed in July with hsv1 (1.82) and hsv 2 (4.40) Herpeselect so I'm still trying to deal with this emotionally.

Like I said in my first post I have only had one sore down there probably close to a year ago and had no idea that it could have been H, thought maybe it was a shave bump or pimple. Ex boyfriend told me first week of July that he may have exposed me and I needed to get checked. I did, doctors confirmed and put me on Acyclovir 400 mg twice a day.

Now tonight as I was worrying myself sick about this again, I was looking on a website where real people were talking about Acyclovir and the long term effects. It seemed like alot of people were experiencing hair loss and some with kidney problems.

My doctor was only going to put me on episodic treatment if I had an ob but asked me if I was sexually active. Which, I am not BUT have been talking to a man and wasn't sure if in the future would lead to that or not. I have told the man about my condition and he is still wanting to pursue our friendship.

Now, I'm panicking wondering if I should NOT be on the suppressive (long term) therapy but just keep getting the prescription filled and take it only if I get an ob. I DON'T want to lose my hair and I definitely DON'T want kidney problems (renal failure). I also feel like I'm tired and sleepy all the time and my back hurts often. I'm scared.

Another thing that has been bothering me is my lips. Before I was told that I do have H, I never really noticed anything unusual about my lips other than being chapped often but now I am constantly feeling like they tingle all the time and am wondering if I am trying to get a sore on my lip. I've been using Carmex and I keep checking my lips but every little twitch or tingle has me going paranoid wondering if I'm getting and sore.

Has anyone that has been on long term use of Acyclovir here had any signs of losing hair? For mild or no ob, do you take no meds or eposodic or suppressive. I'm just not sure what I should do....This is so frustrating!

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lizabeth

I have heard of hair loss... And it's okay to just take the meds during an OB.. it'll be fine... some people don't use supressive therapy and are fine...

others take the therapy to protect a new partner (extra)

Anything else going on??

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ntdc

Toxicity is not really common many people have been on suppressive therapy for years and years without incident but obviously you should have regular check-ups to make sure you continue to have normal kidney and liver function. Your liver and kidneys can repair themselves in most cases even when drugs have damaged them so long as you discontinue use.

Episodic therapy is probably not likely to cause either hair loss or toxicity.

As a note hair loss is a known side effect but not amongst the most common side effects. Also it is not known as a side effect of famvir which is a similar drug, so if you find you are having hair loss you can switch to famvir.

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