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Help with Acyclovir and questions please!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Bunchy, Nov 29, 2015.

  1. Bunchy

    Bunchy Senior Member

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    Hello,

    Can anyone advise what the recommended dosing schedule is for Acyclovir?

    I am in the UK so I don't have the relevant test results showing specific viral titers etc but I have had previous exposure to EBV (Mono) and VZV/HHV-3? (chicken pox).

    I finally managed to persuade my (reluctant!) GP to prescribe me Acyclovir to try.

    She refused to prescribe Valtrex because of the cost. I was quite disappointed as that was what I really wanted to try, or even better would have been Famvir since from what I have read (not too much yet) this is the best one for EBV and my illness started after two bouts with Mono in one year.

    I also have an ME email friend who suffers from similar atypical severe neuropathic pain symptoms (as a complication of ME) to me whose viral titers were sky high for VZV and he is reporting some improvement on Valtrex.

    My GP did say that depending on how I respond to Acyclovir, she may consider Valtrex in future if I show a positive response to Acyclovir.

    Also how does one tell the difference between the side effects from an anti viral or a Herxheimer reaction? The symptoms look similar.

    Is it best to start at a very low dose and titrate up? Any guidance on how to do this?

    I'm a bit lost with all this - any information and help would be really helpful!

    Thanks :)
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    I was taking 6x 400 mgs a day. Spaced out throughout the day.

    I started very slow and eased up. 400 a day for a few days. Then add 400. In fact I may have started with 200. If you have a reaction hold at that dose until you stabilize. There is no rush to get it all at once. It took me a month to get at that dose

    Drink lots of water. I actually had good luck with it. Slight but noticable difference
     
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  3. minkeygirl

    minkeygirl But I Look So Good.

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    Oh you don't herx from antivirals. That's only antibiotics and bacteria. You just may feel crap
    It's all individual.

    Just go for it. Nothing to be afraid of. I had pain with Famvir for a few days every time I upped it.

    And valtrex is not the cure all. I could not take it. I was in a constant rage. Anger like I'd never known.
     
  4. SOC

    SOC

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    Acyclovir and Valtrex are essentially the same medication. Valtrex is a prodrug which converts to acyclovir in the body. Valtrex is considered better as an oral form because it has a much greater bioavailability so theoretically you need to take less Valtrex for the same effect. My guess is that your doctor is just being cheap -- acyclovir is less expensive than valacyclovir, the improved form. The good news is that you're getting the same drug. It's a bit backwards to suggest that you will only get the more effective form if you respond to the medication with lower bioavailability, but that's doctors for you.

    It is not possible to have a Herxheimer reaction from an antiviral. A Herxheimer reaction is the result of the body reacting to large amounts of toxins produced in the rapid die-off of certain pathogens. Antivirals do not kill off viruses directly. They slow replication so there's no massive die-off. Also, viruses are not among the pathogens that produce those kinds of toxins. So no herx with AVs.

    That does not mean you might not have a difficult period on antivirals. It may be an intolerance to the medication. There is some speculation that in a limited set of circumstances some patients that have been ill a long time may experience an IRIS-like reaction from taking AVs. This is not at all common with acyclovir or valacyclovir, but happens more often with valgancyclovir. If you have bad symptoms from acyclovir it is much more likely to be an intolerance to the medication/side effect than a positive sign that the medication is working.

    IMO, it's always smart for PWME to start low and go slow with medications. Some of us can be very sensitive. How to titrate up can be very individual. It depends in part on how sensitive you are to medications in the normal way of things. I'm not paticularly sensitive to medications and titrated up to full dose in less than a week. Other people can take months. One of my specialists said you can usually tell within 3 days if you are going to have a difficult rxn, so increasing on a 3-day schedule (as long as you don't have bad side effects) often works. If you have a difficult rxn stay at that dose longer or drop back and stay at the lower dose for a while to see if the rxn clears up before increasing. That's just a rule of thumb, so use your best judgement.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Valtrex is converted to acyclovir in the body. The advantage of valtrex is less dosing as it has a longer half life as well as lower doses needed compared to acyclovir itself to get adequate dose.

    Just a suggestion but famvir is actually cheaper than valtrex and acyclovir from www.alldaychemist.com

    Another option to talk over with your dr is to add probenecid to acyclovir as it increases the half life of antivirals as well as blood levels. You will require less dosing frequency and be more cost effective. But it can increase the levels of other medications such as anti inflammatories so you need to discuss it with your dr.
     
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  6. Bunchy

    Bunchy Senior Member

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    Thank you everyone for your helpful replies! :)

    @minkeygirl - it's good to hear you had a slight improvement from Acyclovir. I am keeping my fingers crossed for the same, not expecting miracles, but any improvement would be amazing. I had two years recently where I had a spontaneous partial remission (symptoms about 60-70% improved and thought I was recovering for a while) but have been backsliding somewhat again this year...sigh!!

    @SOC - thank you for all the detailed info. Yes I plan to start low having experienced some bad reactions in the past to certain types of medications...

    Thanks both of you for explaining that anti virals do not produce a Herx - that is good to know also!

    @heapsreal - I think Famvir is expensive in the UK and I am wary of ordering from online pharmacies as you don't know if you are getting the real thing and even if you are, what else might be in it or/and how and where it was manufactured. I'm very wary of most medications these days anyway, having had a nightmare ordeal with benzos in the past. It's taken me years after that experience was over to find the courage to try a different approach with anti virals this time and I am nervous of how they may affect me!! Do you have advice about how often to dose with Acyclovir because of its shorter half life? I see that you have experience with quite a few anti virals yourself. The doc gave me a good supply but the instructions were to take 400mg twice a day only!

    Thanks to all of you for your help and advice xxx
     
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  7. Teapot

    Teapot

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    Hi,
    Just wondering how you managed to persuade your GP? Were there any studies or anything you showed her?

    A few years ago I had a weeks dose of Acyclovir for chickenpox (I got it within hours of the first spots). After that died down I had the best couple of months I had in years before going back to my "normal". I did talk about it to my GP but it fell on deaf ears.

    I'd really like to give it a proper trial - when I was initially diagnosed way back when it was after having EBV and the specialist at the time said ME was an improper immune response to a virus - normally EBV or coxsakie B (according to him).

    Thanks
     
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  8. maryb

    maryb iherb code TAK122

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    How much Famvir do people take for a severe outbreak of herpes?
     
  9. Webdog

    Webdog Senior Member

    Just after my CFS diagnosis, one of my specialists (liver doctor) told me that they were using antivirals at Stanford. So mentioned this to my GP. Doctors seem more open to what their peers say than what their patients say.

    I then persuaded my GP via the Institute of Medicine report and this article

    http://www.psychiatryadvisor.com/op...-in-chronic-fatigue-treatment/article/405424/

    that I really was a longtime ME/CFS sufferer misdiagnosed with recurrent treatment-resistant depression, and might respond better to antivirals than antidepressants.

    My GP agreed to start me on generic Acyclovir 800mg x 2 per day.

    After 4 months, I've seen some improvement. I've gone from housebound 6-7 days a week to 4-5 days a week. The brain fog has lifted a bit. After exertion, PEM usually subsides after 1-2 days, instead of 3-4 days.
     
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  10. Bunchy

    Bunchy Senior Member

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    Sorry for late reply - I have had severe flu :-(

    Just realised my GP only prescribed 400mg twice a day which is not enough to treat anything from what I have researched so far. She also has not put it on my repeat prescription form which means I will need to go and see her again both if I want to get the dose changed or/and to get more when I run out. (I have not tried it yet so don't know whether I can tolerate it anyway due to trying to recover back to my usual state first from this flu).

    I'm not sure the GP will agree to a higher dose - she didn't really want to prescribe it for me in the first place. She says there is no evidence to prove anti virals work in ME and that she would normally only prescribe them for obvious infections.

    I really think anti virals are worth a shot in my case, particularly with some of my viral type symptom attacks and the extensive neuropathic pain I have which worsens in response to flare ups.

    How can I convince her to help? DH thinks I would need to see the specialist again to be allowed to give this a serious try but even the specialist didn't want to prescribe anything other than an antidepressant (which I refused) both times I saw him (he's an immunologist). You know....it's the usual story from an ME patient in the UK. Impossible to get proper treatment (or at least an attempt at treatment) here....

    Can anyone enlighten me on which anti virals are having some success and which are worth trying for which types of viruses? I suspect EBV reactivation and perhaps VZV reactivation in my case but tests are not available in the UK (as far as I know) to assess viral titres so it's all down to guesswork and trial and error. I know I will need to produce a very convincing argument/evidence that they help people w/ ME to twist the arm of the specialist or my GP to attempt proper treatment.

    Thanks to the poster above for the link. I will print that and show my GP next time I see her - it might help.

    Sorry this is brief, still not back to baseline after the flu. Thanks everyone xxx
     
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  11. SOC

    SOC

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    You can't. I imagine it's too much to expect her to go against your government's policy on this issue.
    You will have to prove herpesviral reactivation. Ask your GP what you would need to prove it. I bet she'll say there is no such thing except in HIV and transplant patients taking immunosuppressive drugs, so 1) there's no way you have reactivations, and 2) there's no way to test you that she will accept. Still, it's worth a try asking her just in case she's willing to tell you what would convince her. Otherwise you're just guessing at what she wants/needs.

    Valacyclovir (and acyclovir) are supposed to be best for alpha- and gamma-herpesviruses (HSV, EBV, VZV), while Valgancyclovir is supposed to be better for beta-herpesviruses (CMV, HHV6). There's some reports that Famvir, which is supposed to be more for alpha- and gamma- forms, has more effect on beta-herpesviruses than valacyclovir, but not as much as valgancyclovir.

    Your best bet is probably to go outside the UK if you want the kind of antiviral treatment that is working for some PWME.
     
    Last edited: Dec 9, 2015
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  12. Scarecrow

    Scarecrow Revolting Peasant

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    Not defending the UK government's (or even the Scottish government's) record on ME/CFS but what drugs are prescribed by a GP has nothing to do with government policy. It would be a combination of NHS (assuming the GP is not a private one) and GMC policy. Oh, not forgetting our other favourite group, NICE.
     
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  13. SOC

    SOC

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    Sorry, I thought NHS and GMC were government agencies with policies... hence I came up with "government policy" which is not really the best description. Would "the policies of governmental agencies" be a better way to express it? Or am I (not surprisingly) confused and NHS and GMC (and NICE?) are not government agencies?

    It's hard enough keeping track of what's what in government and politics in my own country. I'm often confused about who's connected to what and how in other countries.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yes you should really listen to your dr as they fully understand cfsme in that its a false illness belief as well as being deconditioned due to a lack of activity .

    You need to start exercising to overcome the deconditioning and a psychologist could help you to overcome your false illness belief.

    You will find antiviral drugs like acyclovir very dangerous even though its prescribed to someome with genital herpes for many years for supression therapy. Having a false illness belief you may end up with liver failure.

    If your lucky you may find a find dr who treats outside the box, a real lateral thinker who will prescribe you nurofen while you wait for scientists to find a cure. Also he will know a good gastro dr who will be able to fix the ulcer and GI bleeding you are at a high risk of getting from chronic use of nurofen.

    All the antiviral studies and experience in the USA by dr lerner, dr montoya , dr klimas, dr peterson, dr dantini and more that show they help a subset of pts doesnt apply to uk cfsers as they dont test people with a false illness belief and to measure titres you have to have a chronic immune disorder like hiv or be on immune suppression drugs for an organ transplant. Having a false illness belief doesnt count as an immune disorder plus being diagnosed with cfsme means they will severly limit any testing for you unless you arrive in hospital by ambulance unconscious.

    I wish you luck. Go with your gut feeling and do alot of your own research, most drs dont have a clue about cfsme. Hopefully you can find a good dr outside of the uk where they are allowed to think for themselves and actually recognise cfsme alot more than just a psych issue as well as do proper testing. I hope you can afford to do this. There is good information on this site which i hope you use to make a well informed decision. It sounds like you know where your at just dont have a dr to help you out properly .

    Good luck.
     
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  15. minkeygirl

    minkeygirl But I Look So Good.

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    It's good you have a doc to rx for you. As I said, I had significant improvement when I got acyclovir for myself.

    I couldn't find a doctor willing to look outside the box and see my high viral Titres and 20 years of sickness actually indicating a problem

    I've been on Famvir for 2 years and Valcyte for 10 months. My Labs are fine and I have not gotten worse.

    Experiences from others here is for more beneficial than anything you can get from the medical community who can't look past what they learned in medical school decades ago.

    And as you said, you have an rx. That wouldn't stop me though, from getting treatment that is available now. Only until doctors are housebound with ME and go untreated for 20 years have the right to tell me what to do or who to listen to.
     
    Last edited by a moderator: Dec 10, 2015
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    I'm still trying to get to grips with all the U.S. agencies!
    The GMC is a professional organisation and registered charity.

    I think that the NHS and NICE are correctly termed non-departmental public bodies, which reflects their largely autonomous position. The Minister(s) for Health, ie politicians, might get it in the neck if the NHS doesn't meet targets like waiting lists being too long or too many patients dying at certain hospitals but it's a bit of a stretch to suggest that government policies determine drugs that are prescribed, other than in the loosest of loose senses.

    To come at this from another angle, it would be interesting to know if someone with ME would be able to get acyclovir in the UK via private medical insurance.
     
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  17. Clerner

    Clerner Senior Member

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    So is acyclovir the same as valacyclovir? Both generic for valtrex? Or, valacyclovir is the official generic and it turns into acyclovir in body? Confused a bit..
     
  18. SOC

    SOC

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    Valacyclovir is a prodrug of acyclovir. It was developed long after acyclovir to improve oral bioavailability of acyclovir. Basically, valacyclovir is the new and improved version of oral acyclovir. Valacyclovir turns into acyclovir in the body, so in that sense it is the same medication. Acyclovir is NOT a generic for valtrex. They are not interchangeable in dose or dosing times. It has less bioavailability.
     
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  19. Clerner

    Clerner Senior Member

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    Thanks! Explained very well!
     
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  20. Calihope

    Calihope

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    Have any of you taken acyclovir and had side effects? I recently began acyclovir (liquid form) at a beginning dose of 50 mg and have gradually worked up to 200 mg a day. I am having chills and some flushes, as well as unusual intermittent pain/electric feeling impulses in my brain. I also have developed some sores on my skin. Don't know what to make of it. Thank you for sharing your experiences....I am a bit concerned.
     

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