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Valacyclovir dosage

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Katyw, Oct 20, 2015.

  1. Katyw

    Katyw

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    Hi there

    I have been prescribed valacyclovir by my ME specialist as I have high EBV titres and symptoms of chronic reactivation. I have been advised to take 4g daily. I think she wants me to take this amongst straight away. Does that seem a lot? I know she is basing this dosage on the fact that I'm a larger lady and she is following Dr Learner's protocol. Even though I'm poorly, I can actually tolerate drugs quite well and have been on 1g of acyclovir daily for two years so this might help the transition. Any thoughts on how I should proceed?

    Thanks
    K
     
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  2. Mackee

    Mackee

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    A similar thing happened to me recently.
    I was to take Valtrex, 1 gram, 3 times a day. I also was recently diagnosed with CEBV, reactivated. I have some advice for you as I did not do well on the Valtrex alone. I will be writing in a bit later on regarding this & my new protocol. :)
     
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  3. minkeygirl

    minkeygirl But I Look So Good.

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    I would never start that high on an antiviral. That's from personal experience.

    Being on acyclovir might help but I don't know

    I took a high dose of acyclovir, 2400 mgs, with no problem. But I was unable to tolerate valtrex at 1000 mgs.

    I think after a week or 2 it altered my personality. I was in a constant rage. It was horrible. As soon as I stopped it I was fine.
     
    Last edited: Oct 20, 2015
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  4. Sushi

    Sushi Senior Member Albuquerque

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    That is a lot higher than I was prescribed. I was prescribed 500 mg twice daily. I started with 500 once a day and I never got above that as I had severe side effects and had to stop after about a month.
     
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  5. SOC

    SOC Senior Member

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    Dr Lerner had me on 6g daily for quite a few years. I was a "larger lady" then, too. Now I take 4g daily and I still get occasional reactivations, so I can't imagine taking less would be a good idea for me. Some of us need doses in the 4g (or more) range, but not everyone does.

    Make sure you drink plenty of water and that your doctor is keeping an eye on your labs.

    My daughter and I have both taken Valtrex at doses of 4g (or more) for many years no with no adverse effects. We are not particularly intolerant to medications. This doesn't mean that kind of dosing will work for (or is even needed by) everyone, of course.

    If you're uncomfortable going straight from 1g to 4g, you could ask your doctor if it's okay to increase the dosage more slowly.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    As Professor Jose Montoya is the expert in the use of valganciclovir in ME/CFS, and he was speaking about the use of this drug at the UK Research Collaborative conference last week (you may find it helpful to read the summary of his presentation on the PR conference discussion), I suggest you have a look at paper which covers the most recently reported clinical trial involving this drug:

    http://onlinelibrary.wiley.com/doi/...ionid=1EC490977B4E9BFB284EDE1A4A4E7A67.f02t03
     
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  7. Katyw

    Katyw

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    Thank you everyone for you Mr replies- it's. It's really helpful to get patients experiences on this.

    @Mackee - that would be great if you could let me know what didn't work for you and what protocol you are on now

    @minkeygirl - wow it's sounds like it can be very individual reactions to this drug. Did you get any other negative symptoms? I've been told to expect a 'herxiemer'. I'm on day 3 of 2g and I've woken up with swollen glands and sore throat so maybe that's a sign it's working.

    @Sushi- thank you for your input. I will definitely go low and slow. I'm on 1g now and I feel rough but not severe so hopefully it's ok.

    @SOC wow that seems very similar to my case. How long were you on a high dose for? Did you get worse before you felt better? Did you start slowly or go to the max dose straight away? Sorry for all the questions! I have read that some people feel worse on a lower dose. I woke up this morning with a bad sore throat and virally! I might increase and see.

    @charles shepherd - thank you for that link, I will take a look.

    K
     
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  8. charles shepherd

    charles shepherd Senior Member

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    Updated MEA summary of the presentation from Jose Montoya at the UK RC conference in Newcastle on Tuesday 13th October 2015:

    Professor Jose Montoya, Stanford University, USA, opened the first plenary session on neuropathology with an outstanding presentation that commenced with a one minute silent tribute to his close colleague and friend Dr Martin Lerner, who had recently died. Martin Lerner had worked with Professor Montoya on a number of research studies, including the use of antiviral treatment.


    Professor Montoya also referred positively to the impact of the Institute of Medicine (report and is a supporter of the new IoM diagnostic definition for ME/CFS (or systemic exertion intolerance disease/SEID as is being recommended in the report) because he believes that clinicians need a simple and accurate way of making a diagnosis. He believes that the new IoM definition, which empasises post exertional malaise and orthostatic intolerance is preferable to the options – eg Canadian, Fukuda – that are currently available. Work from the Stanford group indicates that there is a strong (90%) concordance between Canadian, Fukuda and IoM definitions.


    He then said that people with ME/CFS had been ignored and humiliated by the very people who were supposed to be helping them – the medical profession. In his own words….“I have a wish and a dream that medical and scientific research societies in the US apologise to their ME/CFS patients”.


    Turning to treatment, Professor Montoya described how the publication of a flawed clinical trial involving acyclovir back in 1988 had led to the view that ME/CFS was not caused by EBV infection and that antiviral drugs do not have any role in the treatment of ME/CFS. Despite this, he has been involved in a number of the clinical trials that have assessed the efficacy and safety of the antiviral drug valganciclovir. This is a treatment option – involving a lower dose than is normally used in other situations and over a prolonged period of time, at least 6 months, possibly much longer - that he now uses for some ME/CFS patients with considerable success. In addition to antiviral activity and reduction of latent HHV-6 replication, he believes that this drug may have immunomodulatory effects in ME/CFS as well (as it can decrease the level of white blood cells called monocytes and reduce microglia activation in mice).


    [CS note: During the discussion that followed I pointed out that here in the UK antiviral treatment is not recommended by NICE - so all antiviral drugs are seldom used in ME/CFS and very little interest has been shown in further research or clinical trials involving antiviral treatment. The MEA has met with Roche, the pharmaceutical company that makes this drug, but we did not have any success in trying to set up a UK clinical trial. We clearly need an independent randomized placebo-controlled trial to assess the value of valganciclovir in ME/CFS.


    Professor Montoya then described some of the other research that his multidisciplinary group at Stanford are carrying out on a large group of ME/CFS patients, along with healthy controls, with the help of a $5 million anonymous donation. In particular:


    · Immune function studies which are looking at the response to infection with various organisms. In particular, the role of immune system chemicals called cytokines, how the cytokine pattern changes over time (less or more than 3 years – the Hornig/Lipkin study), as well as daily fluctuations in cytokines relating to activity levels. To do so they can measure over 50 individual cytokines and have access to a cohort of around 200 ME/CFS patients and 400 controls. Proposed research at Stanford will also involve a detailed study of the role of NK cell status and function in ME/CFS.


    · Virology studies examining the role of latent herpes viruses including EBV and HHV-6 and how low NK function may be maintaining HHV-6 activation in ME/CFS. Professor Montoya also referred to research involving Torque viruses. Torque teno virus is considered to be a relatively new global marker of immune function and the more immunosuppression occurs, the higher the level of torque viruses. Professor Montoya pointed out that torque viruses have been found to be lower in ME/CFS – adding further support to the role of immune system activation in ME/CFS.


    · Neuroimaging studies looking at both grey and white matter in the brain - one of which has used diffusion tensor imaging, an MRI based technique that can visualize location, orientation and anisotropy of white matter tracts in the brain. This study has recently been published and reported a very significant structural abnormality involving the right arcuate fasciculus. This structure contains fibres, which connect different areas of the brain. The fibres are thicker in ME/CFS than in healthy controls and the inference is that nerve fibre transmission is therefore affected. The abnormality could turn out to be a diagnostic marker for ME/CFS.


    · Genetic studies examining HLA characteristics in ME/CFS and a genetic predisposition to ME/CFS


    Key references:


    Immunology: cytokine status and illness duration


    http://www.ncbi.nlm.nih.gov/pubmed/26079000


    Neuroimaging: right arcuate fasciculus abnormality


    http://pubs.rsna.org/doi/abs/10.1148/radiol.14141079


    Valganciclovir clinical trials:


    Kogelnick 2006:

    http://www.ncbi.nlm.nih.gov/pubmed/17276366


    Lerner et al, 2002:

    http://www.ncbi.nlm.nih.gov/pubmed/12582420


    Lerner et al: 2004:

    http://www.ncbi.nlm.nih.gov/pubmed/12582420


    Montoya et al 2013:

    http://www.ncbi.nlm.nih.gov/pubmed/23959519


    In this trial Montoya et al randomized (2:1) 30 ME/CFS patients with elevated IgG antibody titres against HHV-6 and EBV to receive valganciclovir (VGCV) or placebo for 6 months in a double-blind, placebo-controlled trial. Statistically significant differences between groups were observed in mental fatigue subscores and cognitive function. The VGCV patients experienced improvements within the first three months and maintained that benefit for the remaining 9 months. In the VGCV arm monocyte counts decreased, neutrophil counts increased, and cytokines were more likely to evolve towards a Th-1 profile.


    Watt et al, 2012

    http://www.ncbi.nlm.nih.gov/pubmed/23080504


    Valganciclovir reduces inflammation in HIV:


    http://hivandhepatitis.com/recent/2011/0426_2011_c.html


    >> All patients treated with valganciclovir had undetectable CMV viral load after 8 weeks of treatment, while 44% of those in the placebo group still had detectable CMV. In addition, valganciclovir-treated participants had significantly greater reductions in CD8 T-cell activation (defined as CD38+HLA-DR+ marker profile) compared with placebo recipients at weeks 8 and 12 -- a reduction of about 20%. Patients in the valganciclovir arm also had reduced levels of high-sensitivity C-reactive protein (CRP), a blood biomarker of inflammation.


    Virology: Torque viruses:


    http://jid.oxfordjournals.org/content/early/2014/05/05/infdis.jiu210.full


    YouTube video of opening remarks from Professor Stephen Holgate and presentation from Professor Jose Montoya:


     
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  9. Katyw

    Katyw

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    Thanks @
     
  10. Ema

    Ema Senior Member

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    I took 4g/day while seeing Dr Lerner as well. I found it quite an easy drug to tolerate in comparison to many of the antibiotics.

    Wishing you the same experience!
     
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  11. Katyw

    Katyw

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    Thanks @charles shepherd

    That's very interesting. Thank god we have professor Montoya helping out patient group! I do feel the UK are seriously behind in terms of treatment options and diagnostic methods.

    I was particularly interested in the fact that anti virals can reduce inflammation, particularly CRP as I have had raised CRP ever since I've been ill.

    @Ema thanks for that. Yes I always feel so awful on antibiotics. Can I ask you- did you start slowly? Also, how long were you on them for?


     
  12. Mackee

    Mackee

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    I could not tolerate the generic Valtrex @ 1 g, 3x/day. I am not generally intolerant to or particularly sensitive to meds as a rule; however, I am not a very large adult (5'6", appx. 114-120 lbs).
    My specialist took me down to 500 mg., 2x/day of Valtrex (Brand name this time) temporarily--for about 2 weeks, until I felt okay to go to 500 mg., 3x/day and then titrate slowly back up to the initial dose. I was given clear instructions to take each dose after a full meal only.
    This time, I was also rx'ed Zantac (300 mg), to take before each meal in which I was taking the Valtrex dose afterwards.
    I was told the Zantac can help with peptic side effects, but also helps to increase absorption of the Valtrex in the system.
    Still, I wasn't doing too well with the Valtrex. So yesterday, my Specialist prescribed a new protocol for me. (Personally, I had not heard of it yet, but it sound promisingand makes sense to me thus far).
    I am now rx'ed Acyclovir, 800 mgs., 4x/day. (However, I am beginning with 2x/day tostart with).
    I have been given instructions to crush each tablet extremely well & then stir &dissolve it into a few ounces of warm water.
    I am not to swallow this mixture, but rather"swish" it around in my mouth for 3 min. & then spit out. I can rinse my mouth out with water, etc. when I'm done, too. If all goeswell, I will I begin doing this 4x/day and for 6 mos. on the full dosage.
    I am still to take the Zantac as well.
    This method is said to help bypass many of the potential side effects that I may face by just swallowing it.
    One of his nurses walked me through the phone had personally via phone yesterday.She followed the same protocol and is functioning at a "normal" level and saideven feels quite peppy often now (whichher demeanor/voice does seem to radiate, haha).
    She also gave me some awesome tips & tricks for following the protocol on the go and so forth.
    I am feeling optimistic about this so far.
     
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  13. minkeygirl

    minkeygirl But I Look So Good.

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    @Katyw i was
    On it long enough. The rage was overwhelming and something I couldn't live with.

    You just have to try it. you can't base what you do on others experience since they are so varied
     
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  14. SOC

    SOC Senior Member

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    I don't remember now exactly how long I was on the 6g dose, maybe 4 years? I lost weight, so I reduced the dose to 4g daily. In 6-7 years I've never been on less than 4 g. I don't remember if I went straight to 4 g or worked up, but I'd suggest starting low just in case. It can't hurt, other than possibly adding a few weeks until you see some improvement.

    I did not feel worse on Valtrex before I felt better. I also didn't feel vastly better quickly. It was more a question of not getting mono-like symptoms 3-4 times a year. There was probably also a slow steady improvement over years as a result of not always fighting off the herpesviruses Valtrex treats.

    Valcyte (valgancyclovir) was another matter. I did have a period of IRIS-like reaction with Valcyte, but I felt SO much better once that was over that I feel it was well worth it... in addition to the fact that the IRIS-like rxn suggested that my immune system was working better which is an important issue.

    The sore throat and swollen lymph nodes could be an IRIS-like rxn, but unlikely if it happened within the first day or so. If it's been closer to a month since you've been on Valtrex, I'd consider an IRIS-like rxn as a possibility.

    Dr Lerner said that his patients did better on some generic Valtrex than others, so that might be worth considering if you are have trouble with Valtrex. He suggested Mylan and one other (I forget the brand) as the better ones. I always took Mylan until recently and never had side effects.
     
    Last edited: Oct 21, 2015
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  15. SOC

    SOC Senior Member

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    Just for clarification~
    Dr Montoya was speaking about valgancyclovir (Valcyte), not valacyclovir (Valtrex). While both antivirals address herpesviruses, they each work better with different subclasses of herpesviruses. They are not interchangeable. In addition, Valcyte has a much higher side effect profile than Valtrex. However, Valcyte is needed for HHV6 and CMV infections for which Valtrex is not very effective.
     
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  16. Ema

    Ema Senior Member

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    No, I did not start slowly.

    I took Valtrex for almost two years and Valcyte for about 1.

    Teva!
     
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  17. Katyw

    Katyw

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    Thank you everyone- I really appreciate your help :)

    I think I will start slowly but feeling really bad already so I don't know if this is a herx, feels like it as had one before. My worse symptoms of ME are viral related so hoping this will help.

    I have also got stomachache so I don't know if that's to do with it.

    I will keep you posted x
     
  18. SOC

    SOC Senior Member

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    The good news is that you can't herx on antivirals. The herx rxn is caused by the large amount of toxins involved in a sudden die-off of certain pathogens. Antivirals don't kill pathogens like antibiotics do. They reduce the replication of the virus, but your immune system still has to kill off the existing infected cells, or the cells have to die a natural death. This does not cause the sudden die-off abx can, so no herx.

    That doesn't mean that you can't have a bad rxn to an antiviral, but it's not a herx and shouldn't be treated as one. If it's just that you can't tolerate the med, continuing it could be bad for you. If it's an IRIS-like rxn, you might be able to push through, but it might be wiser to back down on the med. That's a question for your doctor.
     
  19. Katyw

    Katyw

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    Thanks @SOC i really didn't know that. It may be similar to a herx but not. I heard that people do get worse before they get better on it though.

    My doctor told me this: Dr learner found that patients had a “Herxsheimer” response with worsening of symptoms and a worsening score continuing for two to six weeks after treatment began was a good prognostic omen. Increasing energy score and decreasing symptoms were apparent at the fifth to sixth month of continuing Valacyclovir.

    I its not really a bad reaction as such I just feel an increase in my normal main symptoms (sore throat, swollen glands, fatigue, general malaise, stomachache) I don't have any differing symptoms. Should I expect that to be a 'worsening of symptoms' as opposed a bad reaction to the drug?


    That's
     
  20. Mackee

    Mackee

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    Have you asked your doctor about prescribing Zantac to take with the AV?
    My specialist has me on Zantac, 300 mg, 2x/day as he says it helps in a few ways with antivirals. Recommended protocol =
    Take Zantac pill. Eat a full meal. Take Antiviral dose.
    The Zantac aids absorption of the AV in your system while also helping to curb the Gi side effects from the AV.
    Best,
    Leslie
     
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