Question about long-term daily suppressive therapy.

[montereypop]

Hi everyone!

 

I would like to ask for some first-hand advice on the implications of using valacyclovir daily (for years) as a suppressive therapy. 

 

Some quick background info: Diagnosed positive in 2019. I have been treating OBs with anti-viral medicine (1000mg valacyclovir for anywhere between 3 to 5 days) for the first few years. Last year, and due to the high frequency of OBs (and subsequent deteriorating quality of living), my doctor put me on a daily suppressive therapy (500mg of valacyclovir daily) for one year. My verdict after a year: While the little bastard of a virus is still giving me the odd headache (quite literally!), the daily suppressive therapy has significantly improved my overall well being!

 

About a month ago (so exactly a year after starting the daily suppressive therapy), my doctor recommended me to revert back to my original treatment, which was taking 1000mg of valacyclovir for a number of days at the onset of an OB. While OBs haven't been as bad as they were at the start, I do feel somewhat of a constant sensation of discomfort in my genital area since stopping the meds. Although its probably not the right term to describe the sensation I'm feeling, though its almost as if I am experiencing some kind of phantom nerve pain, or the constant (and slight) feeling of an imminent OB.

 

Obviously, I wouldn't mind living without any of this, hence I am thinking of giving the current routine another month or so before heading back to the doctor and asking him to put me back on the daily suppressive therapy if there isn't any significant improvement.

 

My question is, however, why did he ask me to stop the daily suppressive therapy after a year? Are there any potential issues taking valacyclovir for longer than that (i.e. for several years), or does he want to avoid the virus developing a tolerance for the medicine?  I am in my mid thirties, and tbh, I am torn between not wanting to take any daily medicine at all this early in my life, but also appreciating that the meds do help me a lot! Also, my wife and I are planning to have children in the next few years, and we really hope to get this somewhat under control.

 

Thank you so much for your support, and  I hope to contribute to this forum with some of the things I've learned in the past couple of years!.

 

 

[mr_hopp]

Hey there @montereypop!

Thanks for sharing your experience and questions. It's great to see you looking for help while also wanting to contribute to our community. Much appreciated!

Your situation with herpes and medication is a thoughtful one. Valacyclovir, as you know, can be quite effective in managing outbreaks and improving overall well-being. The decision to switch from a daily suppressive therapy back to episodic treatment might have a few reasons.

Firstly, doctors often consider the overall health and medical history of the patient when prescribing medications long-term. While valacyclovir is generally considered quite safe over the long term, like any medication, it can have side effects or interactions with other medications you might take. Your doctor may have wanted to reassess your specific case after a year to see if the daily therapy was still the best fit for you.

Secondly, herpes medications are typically well-tolerated, and the virus doesn't easily develop resistance to them. However, there might be concerns about long-term use and potential side effects, although these are generally rare.

There's also the consideration (assuming your wife doesn't have herpes) of protecting her. Episodic treatment won't do that, but daily suppressive therapy brings down asymptomatic viral shedding anywhere from 50-80%, which is huge in minimizing the chances of transmitting herpes to your partner. 

Remember, you should make choices that align with your comfort and health needs, while also balancing keeping your partner safe. Whether you continue with daily suppressive therapy or opt for episodic treatment, your family's well-being is the priority.

Good luck with your future plans, and congrats on moving into such a sweet phase of life together! Feel free to share more insights or questions with the community as you continue your journey. See you around the forums! 🙌

[montereypop]

22 hours ago, mr_hopp said:

Hey there @montereypop!

Thanks for sharing your experience and questions. It's great to see you looking for help while also wanting to contribute to our community. Much appreciated!

Your situation with herpes and medication is a thoughtful one. Valacyclovir, as you know, can be quite effective in managing outbreaks and improving overall well-being. The decision to switch from a daily suppressive therapy back to episodic treatment might have a few reasons.

Firstly, doctors often consider the overall health and medical history of the patient when prescribing medications long-term. While valacyclovir is generally considered quite safe over the long term, like any medication, it can have side effects or interactions with other medications you might take. Your doctor may have wanted to reassess your specific case after a year to see if the daily therapy was still the best fit for you.

Secondly, herpes medications are typically well-tolerated, and the virus doesn't easily develop resistance to them. However, there might be concerns about long-term use and potential side effects, although these are generally rare.

There's also the consideration (assuming your wife doesn't have herpes) of protecting her. Episodic treatment won't do that, but daily suppressive therapy brings down asymptomatic viral shedding anywhere from 50-80%, which is huge in minimizing the chances of transmitting herpes to your partner. 

Remember, you should make choices that align with your comfort and health needs, while also balancing keeping your partner safe. Whether you continue with daily suppressive therapy or opt for episodic treatment, your family's well-being is the priority.

Good luck with your future plans, and congrats on moving into such a sweet phase of life together! Feel free to share more insights or questions with the community as you continue your journey. See you around the forums! 🙌

Hi mr hopp, very kind of you to leave me a message!

 

Indeed, I was amazed by how well I functioned during my one year on the daily suppressive therapy. The only minor annoyance was that apparently my doctor could only prescribe one pack at the time, so I ended up having to make several trips to the doctors and the pharmacy during that one year. A sacrifice I'm more than willing to make for the extra quality of living!

 

I believe the reason why my doctor asked me to stop the daily suppressive therapy and have me go back to the episodic therapy was to see if my immune system would perform any better at dealing with the virus. Unfortunately, its not looking too great since I'm having an OB only 2 weeks after stopping the daily valacyclovir. 

 

I've made note of the number of the OBs I had since testing positive in 2019.

2019/2020: monthly outbreaks (obviously the first few months being the worst)

2021/2022: between 6 and 10 outbreaks

2022/2023: not a single major outbreak while on the daily therapy, yay!

since August 2023: 1 outbreak after 2 weeks of stopping the meds

 

I'm a tiny little bit upset about the minor progress my body has made dealing with the virus. As far as I am concerned, I am not immunocompromised since I rarely get sick or catch colds aside my OBs that are sometimes accompanied by cold-like symptoms (sore throat and swollen glands, sometimes the odd headache).  I will go back to the doctor and speak with him about how to move forward from here. I'm torn between  purposefully saying no to meds in order to force my immune system to battle this out, and saying screw it, I only live once and I want a normal and happy life!

 

Re. my wife. She is positive too and has been before me. She rarely has any symptoms and apparently only knew of it since I was diagnosed positive. Too much time has passed and I don't like to get angry about this anymore, so I am very happy that she is basically free from any symptoms which is very important for women during pregnancy.

 

I think a daily suppressive therapy for both of us will be on the table again once we plan to have children. I've heard that there is no evidence of possible negative effects of Valacyclovir on the baby when taken during pregnancy?

 

Thank you for your support and best wishes!

 

[montereypop]

Hi everyone!

 

Just a quick update for those who might have a similar question in the future and for those who end up stumbling across this post. 🙂

 

I had chat with another doctor who I have consulted before in the past just to get a second opinion on how to best use anti viral drugs to "treat" reoccurring HSV outbreaks.

 

Just like the first doctor who I consulted earlier this month, she advised me to stop the daily suppressive therapy after being on daily valacyclovir (500mg) for the past year. 

 

She did say that I can go back on the suppressive therapy if I like, but should limit use of anti virals to a couple of months only - perhaps during particularly stressful periods of time or whenever I feel that outbreaks are particularly severe or reoccurring too often. 

 

As for why I shouldn't continue to use 500mg valacyclovir as a daily therapy, her argument was that doctors generally advise patients not to use this drug for several years in a row. Why? I asked. She didn't really mention any particular long term side effects of valacyclovir, however she said that it is common practice to advise patients to opt for episodic treatment over daily suppressive treatment. 

 

I'll probably continue to give episodic treatment a chance although I haven't been doing particularly well since stopping the daily treatment (1x severe outbreak and 1x mild outbreak after just one month of stopping daily valacyclovir).

 

I also bought some L-Lysine supplements the other day just to try and see if this does anything to lessen the severity of outbreaks. 

 

Both doctors said that they've had patients who struggled with outbreaks for years, but then also had said outbreaks disappear for years straight. I guess our immune system is a constantly changing mystery!

 

[mr_hopp]

Thanks for sharing this @montereypop! What isn't captured in this is that daily suppressive therapy helps keep partners who don't have herpes safer since it cuts down on asymptomatic shedding by 50-80%, which is a super important consideration! That is the only reason I have kept taking my daily suppressive Acyclovir is to keep my wife from getting herpes. It's a personal choice for everyone to weigh all the pros and cons and make an informed decision. 

[montereypop]

2 hours ago, mr_hopp said:

Thanks for sharing this @montereypop! What isn't captured in this is that daily suppressive therapy helps keep partners who don't have herpes safer since it cuts down on asymptomatic shedding by 50-80%, which is a super important consideration! That is the only reason I have kept taking my daily suppressive Acyclovir is to keep my wife from getting herpes. It's a personal choice for everyone to weigh all the pros and cons and make an informed decision. 

Hi mr_hopp

Absolutely! Very glad you've mentioned this important point!

My wife is HSV positive too, so transmission between the two of us has never been an issue after I got it aswell. We will absolutely consider taking daily anti virals once we're ready to start a family though to keep the baby safe. 

@mr_hopp Do you mind if I ask how long you've taken the medicine for? One of my major concerns has been if valacyclovir has any side effects when taken by both parents before and during pregnancy. Thank you for sharing your experience!

 

[mr_hopp]

Ah yes, now I see from your posts above that you said your wife was positive, too. Sorry I missed that. 🙂

I've been on daily suppressive therapy (Acyclovir, 400mg twice a day) for about a decade. No side effects for me. Of course my wife didn't take any herpes meds while pregnant since she doesn't have herpes, but Acyclovir and Valacyclovir (Valtrex) have been shown to be safe for babies and pregnancy. Your wife might want to consider taking the meds during the last trimester to minimize the possibility of having a genital outbreak before giving birth (which would require a C-section), but consult with your doctor for more specifics!

Here's an article to check out on that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076471

In short:

Question: One of my patients is a pregnant woman in her first trimester with a history of recurrent genital herpes. She is concerned about whether use of her antiviral medication will adversely affect her baby. What should I tell her?

Answer: Studies have shown that the use of acyclovir or valacyclovir is not associated with an increase in birth defects. Limited data exist for famciclovir and therefore it would not be considered a first-line choice for treatment of herpes during pregnancy.

[Tiredmommaj]

Just wanted to say that I also have been on long term daily suppressants(approx 8/9yrs). My Dr was fine to prescribe and keep me on them. I did however decide to come off for most(2) of my pregnancies and go on for the last month. 
I believed in the beginning of my journey that I should let my body fight it but with every OB it’s seemed to spread somewhere new. I felt every time as broken down as the first time especially bc I tried so hard to do all the right things. 
I think it would have helped to be on suppressants daily from the beginning. 
Also ozone with UV has helped to reduce the herpes in my blood that’s braking down my immune system. So that’s an option. If you wanted to stay off I mean. It’s not cheap though. 
best to you and your wife on your journey of starting a family ❤️

[montereypop]

5 hours ago, Tiredmommaj said:

Just wanted to say that I also have been on long term daily suppressants(approx 8/9yrs). My Dr was fine to prescribe and keep me on them. I did however decide to come off for most(2) of my pregnancies and go on for the last month. 
I believed in the beginning of my journey that I should let my body fight it but with every OB it’s seemed to spread somewhere new. I felt every time as broken down as the first time especially bc I tried so hard to do all the right things. 
I think it would have helped to be on suppressants daily from the beginning. 
Also ozone with UV has helped to reduce the herpes in my blood that’s braking down my immune system. So that’s an option. If you wanted to stay off I mean. It’s not cheap though. 
best to you and your wife on your journey of starting a family ❤️

Hi Tiredmommaj!

Thank you so much for your response and sharing your experience with me!

You've mentioned two very interesting points that made me reflect on my journey so far...

Firstly, I wonder why there are doctors out there who are fine with patients taking valacyclovir daily for several years, and then there are others (like the two doctors I've met recently) who advised me to stay off the valacyclovir, or take it for a couple of months only. Are there different "schools of thought" when it comes to treating HSV? Both doctors I spoke to mentioned that they've had patients who had reoccurring outbreaks for years, and then suddenly they stopped and would be gone for years. Its almost as if they are trying to tell me to "just let the body do its thing" and I should only take the meds if I feel its getting a bit too much to handle. 

The second point which I find very interesting is that you initially thought your body should fight this out itself, but now you doubt if you should have taken the suppressive therapy from the very start. Sometimes I wonder if I was wrong in taking a the medicine (not long term treatment mind you, but as an episodic treatment) when I've had my first outbreak years ago. I've recently stopped taking valacyclovir daily to see if I can handle this without taking any medicine, and I'm shattered to find out that I'm moving from one monthly outbreak to the next, with milder outbreaks / prodrome pain in between the severer ones. You know, I always thought I'm a healthy guy; I don't drink, I don't smoke, I work out up to five times a week and I eat a healthy diet. Nevertheless, I still get these frequent outbreaks and I wonder if its to do with me taking the medicine too early and not leaving the body enough time to build up its own effective immune response. So now I'm stumbling in the dark, trying to find a way that best for me moving forward.

BTW, how come you stopped taking valacyclovir during your pregnancy? Did you worry that it might affect the baby?

Thank you so much for your time and all the best to you!