1 Gram Suppressive Valtrex Isn't Working

[asdf123456789Spectator]

Hi Terri,

I was diagnosed with HSV2 via blood test and symptoms in 2016 and have been on suppressive Valtrex (1 gram a day split into 2 doses 12 hours apart) due to the frequency of outbreaks following diagnosis. It was my understanding that OBs get better with time but that has not been the case for me. I went to an infectious disease doctor who wasn’t convinced I actually had HSV2 so he told me to stop taking my meds and get cultured, if anything happened. I stopped valtrex for 5 weeks, got an OB, was cultured and HSV2 has been confirmed via Labcorp. I get OBs in my eye, as well. I have a great eye doc (it’s not in the cornea which is good news but painful nonetheless) but the pain and frequency of eye and genital OBs is unbearable. I did a course of 2 grams of valtrex a day for 7 days, followed by suppressive dose (1 gram a day) and got an OB three weeks after my culture. I don’t know what to do, I feel prodrome 24/7 and it makes me anxious, depressed, antisocial and really uncomfortable. I can’t enjoy life like I used to: I can’t ride a bike, go to the pool, sauna, hot tub, beach. I can’t date b/c I can’t handle the OBs and the severity of it all. This has significantly changed my life and I am desperate for help. To complicate matters worse, I have Hashimoto’s thyroid which doesn’t help because my hormone levels are constantly changing. Please help, I’m beyond depressed. What would you recommend?

[Terri WarrenKeymaster]

This sounds very challenging for you. One thing that you might try is to split your dose into 500 mg twice a day and if that doesn’t work, you might consider doing 500 mg three times a day. If that doesn’t work there are other medications to treat herpes that you should discuss with your physician. These medicines are normally reserved for people with the immune system problems but in your case, and They might be considered. Before you jump to Bath however, I would adjust your Valtrex does and see how that goes. Sometimes keeping higher levels of the drug in your system rather than one big dose works a little better.

Terri

[asdf123456789Spectator]

Hi Terri, I’m freaked out b/c I just got another OB while on 3 grams of Valtrex/day to combat an eye OB. This is my third genital OB in six weeks. It’s never been this bad. I also got recent thyroid labs back and they are a bit off so I’m wondering if there’s a correlation there. I have an appointment with my dermatologist tomorrow to discuss and I made an appointment with an infectious disease specialist b/c I just can’t live like this.

Do you have any other suggestions or medication recommendations for me to take to my doctor? What other meds are there aside from Acyclovir, Famvir and Valtrex? Should I try Valtrex AND famvir or just switch to Famvir? Is there an effective cream for HSV2 OBs?

Thanks,
Beth

[Terri WarrenKeymaster]

There are no effective creams for HSV 2, no.

Here are the medicines for resistant herpes:

Foscarnet: 40 mg/kg IV every 8 to 12 hours for 21 to 28 days or until clinical resolution is attained. Foscarnet can potentially cause severe adverse effects, including nephrotoxicity and electrolyte disturbances.
Cidofovir: 5 mg/kg IV once weekly for 21 to 28 days or until clinical resolution is attained. Note the cidofovir can cause severe renal abnormalities.
Imiquimod 5% cream: Apply to lesions three times per week for 21 to 28 days.
Cidofovir 1% gel: Apply to lesions three times per week for 21 to 28 days, or longer based on the clinical response. This preparation is not commercially available and must be compounded by a pharmacist.

All of these medicines have more side effects than the usual medicines.
If you were my in-person patient I would ask that you come off of the antiviral medicines and be off for about 5 days and swab an outbreak when it comes and send for culture and evaluated for resistance. It is rare but happens every now and then in healthy people. Also, it would be good to confirm that these are actually outbreaks for sure and not something else. I have seen this situation before and it turned out that the lesions were not herpetic (though they sure looked like it and she did have a herpes diagnosis). I think an ID doc would be useful at this point.

No, do not use both Famvir and Valtrex – that would not be wise, nor useful.
You could try switching to Famvir – some people find it more beneficial.

Terri

[asdf123456789Spectator]

Hey Terri,
I saw the ID doctor last week and he switched me to Famvir. He told me to take 500mg twice a day for one week to see if the OBs and tingling break. While I haven’t had an OB on Famvir, the tingling is still full blown and present all the time. The ID doc wants me to transition to 250mg twice a day after that but I still feel the tingling/nerve pain in my buttocks ALL THE TIME. I can’t come off the suppressive dose because it will cause an outbreak in my eye which could cause serious damage so my eye doctor told me to NEVER do that again.

It is uncomfortable to sit and the tingling coincides with anxiety and stress which is a cycle. The ID doc did say my OB is not standard as it’s primarily one cluster on my right buttocks but I know the OBs are spreading to my lady parts on my labia and it feels like I constantly have a yeast infection, which I have been treated for. Honestly, the tingling is killing me…the Famvir isn’t touching the discomfort or the tingling sensation. The tingling is located primarily where I get my OBs and also felt bilaterally on the left side of my buttocks in the back center…I would call this area my sit bones. The ID doc said that is NOT normal for HSV2. What else could this possibly be? What would you recommend I do? I have Hashimoto’s thyroiditis, I have no idea if my hormones are correlated with any of this but I am really feeling like I’ve hit rock bottom. Should I try a nerve medicine or supplement? I would like to avoid that but I just want to feel normal again.

Please help. Thank you

[KikiParticipant]

Hey. I have HSV 2 for the last 5 years I have been experiencing pain and burning even when I am on Valtrex 2 Gramm daily. For the last year 2017 I have had 25 outbreaks and constan pain in my back and right leg. Nothing works !! I tried Famvir Valtrex Zovirax Lysin tables herpes is slowly destroying my life!! I am 100% sure that nobody suffers the way I do on this forum so don’t get upset. I know exactly how you feel and trust me I feel worst. Good luck dear !!

[Terri WarrenKeymaster]

Why don’t you ask your doc for gabapentin. It can be very useful for nerve sensations. I had a ruptured disk in my back and the pain into my leg was unbearable. While I was waiting to fly home and get surgery, I was given gabapentin and it really did help. Not a full solution but it did help. It would also be helpful to get a swab test of a lesion and get it tested for resistance.

Terri

[asdf123456789Spectator]

Hi Terri, I have previously posted (please revisit my case in previous posts, it’s atypical and complicated) and am having a hard time. I have Hashimoto’s thyroiditis and was diagnosed with HSV2 in 2017 and have been on very high dose suppressive meds since then but still get outbreaks about once a month and I can’t take it anymore. I have herpes of the eye, as well which complicates things and will require me to be on antivirals for life. The tingling in my genital area is present 24/7 and extremely uncomfortable. I’ve visited countless dermatologists and infectious disease docs to look at bumps and discuss 24/7 symptoms. I’ve tried acyclovir, Valtrex and Famvir. Deena think it’s follulitis but no meds help ease bumps and irritation. I do not want to take any more pills for this and definitely do not want to take gabapentin b/c I don’t want to be tired all the time. Plus, I’m already on too many pills.

I’ve been forced to give up things I love doing b/c they trigger HSV2 like biking and racing and now it’s looking like my rock climbing harness triggers OBs, as well. If my sleep schedule is not 8 hours a night, I am prone to getting OBs which affects many things in life that I want to do. I am beyond depressed dealing with the constant stress and frustration of HSV2.

1)Do you know if there will be new HSV2 medications on the market soon? B/c Valtrex and Famvir are NOT working for me. I am currently on Famvir 500mg twice a day which gives me constant migraines but it works MUCH better than Valtrex. Can I take 500mg Famvir in the morning and 500mg Valtrex at night to ease migraines?

2) Will there be a vaccine that will help current sufferers on the market in the near future?

3) Seriously,what else can I do? I cannot keep giving up hobbies I love b/c of this and it is greatly affecting my life in a very negative way. I’ve ruled out kids b/c I can’t handle the constant OBs and stress of this. I’m 35YO and really can’t keep living like this. Please hel

[Terri WarrenKeymaster]

1)Do you know if there will be new HSV2 medications on the market soon? B/c Valtrex and Famvir are NOT working for me. I am currently on Famvir 500mg twice a day which gives me constant migraines but it works MUCH better than Valtrex. Can I take 500mg Famvir in the morning and 500mg Valtrex at night to ease migraines?

I don’t know the answer to this question, sorry

2) Will there be a vaccine that will help current sufferers on the market in the near future?

Sorry, I don’t know the answer to this one either. Right now, there are several therapeutic vaccines in the works but I can’t predict a) if they will be effective and 2) if the companies making them will have enough funding to do a large clinical trial that will be required by the FDA for approval.
the only suggestion I have is to get several swabs done of lesions that are recurrent that you believe are caused by herpes. I’m sorry you have are having such troubles!

Terri

3) Seriously,what else can I do? I cannot keep giving up hobbies I love b/c of this and it is greatly affecting my life in a very negative way. I’ve ruled out kids b/c I can’t handle the constant OBs and stress of this. I’m 35YO and really can’t keep living like this. Please hel

I’m so sorry you are having such troubles, wish there was more that I could do to help you. I would encourage you to have lesions swab tested to see if all of the symptoms you are having are actually due to herpes.

Terri

• This reply was modified 2 months, 1 week ago by  Terri Warren.

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