Help! - BIG Decision, Remicade & Herpes Risk

Hi all, it's been a while since I have posted here, since I am very lucky to have been put in full remission for the last 1.5 years from Remicade. I have been dating a wonderful woman whom I have fallen in love with. We have been together for nearly a year.

Early on in the relationship, she was honest with me that she had acquired genital herpes, HSV-1, which is commonly associated with cold sores but is now known to be transmitted genitally as well. Apparently most of us will have HSV-1 by the time we are in our sixties; it is easily passed orally from kissing. We have not been active sexually but have been able to find other ways to be intimate. Now, we are feeling the pressure and it is affecting our relationship.

I do love this woman, but am scared about the possible complications from my lowered immune system.
Has anyone had any experiences they could share with herpes and a lowered immune system, or Herpes and Crohn's?

Ultimately this is up to you and your partner, and there are plenty of ways to reduce the risk of transmission...but, I can speak to what I am guessing is your "worst case scenario," which is that you end up HSV-1 positive as well. I have been taking Cimzia (another biologic) for my Crohn's for 2 years, and I am positive for HSV-1. Before starting on biologic therapy I expressed the same types of concerns you have and my doctors agreed to put me on a daily dose of Valtrex 500 mg. I have never had an outbreak of a cold sore or any other type of sore at all in the past 2 years. I have absolutely no side effects from the valacyclovir. They said it's not absolutely necessary but it's the plan I felt most comfortable with, and so they have allowed me to stick with it. If you were to, in theory, acquire an HSV-1 infection (which, as you indicated, is statistically likely at one point or another in everyone's lifetime), it is certainly very manageable, even with a suppressed immune system.

HSV-1 is the herpes virus that causes cold sores. It is very very common for people to have HSV-1. Your grandmother could have given you a kiss and passed it on to you. I think I read somewhere that about 60% of the population would test positive for HSV-1.

I am HSV-1 negative, and my husband (who has crohn's disease and takes remicade) is HSV-1 positive. Early on in our relationship, I noticed that he got some cold sores, so I got myself tested and I was negative. We decided to not take any extra precautions other than to abstain from contact when he had a cold sore. So far I'm negative still, I do get tested every year.

Remicade has not increased the frequency of his cold sore outbreaks. When it does happen, he takes Valtrex to make it go away faster.

It's not a big deal, imo.

PV

He gets coldsores on his lip, so I guess orally. You take a different dosage of valtrex for oral outbreaks. I think at the first sign of an outbreak, you take 2 grams of valtrex, and then another 2 grams 12 hours later. If you recognize the signs and take it early enough, it stops the outbreak. If it has already formed a sore, it doesn't really help much.

My husband says he usually feels a tingle on his lip before an outbreak, so he takes the valtrex then, and more often than not, it just goes away.

PV