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My experience with Valtrex

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by mikipe2, Feb 28, 2010.

  1. mikipe2

    mikipe2

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    Hi All,

    I've just started taking Valtrex, and I just thought I'd blog on here about my experiences. Please feel free to move this if it's in the wrong place.

    Thanks for everyone's responses to my other thread, "Valtrex and EBV".

    Below are my first entries. I'm sure they'll become very few and far between once I'm in the rythym of it all, I definitely won't be blogging everyday. I'm very curious to see if it actually does anything, and I'm hoping this might help me keep track better.

    I'm planning to take 1g every 6 hours.



    Tuesday 23rd Febuary 2010

    My name’s Mike, I’m 26 years old, and have had CFS for 8 years.

    At my worst, I was 10% on Dr David Bell’s Disability Scale, but have recovered such that I’m about 50% (on my good weeks).


    My symptoms are fairly common, mainly fatigue, myalgia, orthostatic intolerance, post-exertional malaise and low grade fever. With the limited specialists/tests we seem to have in Australia, all I know is that I have been exposed to Epstein Barr Virus in the past, and have tested negative for CMV. I’m hoping that this makes me a good candidate for Valtrex.

    I’ve received a prescription for Valtrex from my doctor who’s considered to be a CFS specialist in my city. However he’s shown no proactive interest in trying anti-virals doesn’t seem excited or even that interested in the recent XMRV finding, and last time I spoke to him in detail, seemed to believe that CFS was probably caused by previous viral activity that caused brain damage leading to the illusion of fatigue (maybe I misinterpreted him).

    He also recommended against me taking Valtrex due to side effects, and no improvement in the 3 people he’s prescribed it to. I didn’t bother to ask how long they took it, whether they tested for CMV etc etc.

    Regardless, he’s been great with helping me receive the Disability Support Pension, and is willing to prescribe Valtrex to me upon request.

    Before I begin with the drugs, I’ll be getting a blood test to test my liver function. I thought I’d blog on here to let people know what my experiences (and side effects) are, and see if it actually improves anything.

    Cheers
    Mike.


    Day 1 - Friday 26th Febuary 2010

    Just one 500mg tablet today late in the afternoon (as soon as my liver function tests came back healthy). No side effects so far at all.

    Day 2 - Saturday 27th Febuary 2010

    3 Doses of 500mg spread throughout the day. Definitely feeling some nausea, which is minimal to non-existent at times, but moves to moderate once I get fatigued, sleepy, have low blood sugar and/or get overheated. Fixing these problems with food, cooling down, and very importantly a short nap/rest helps substantially.

    Day 4 - Monday 1st March 2010
    Getting the munchies all day! Seems to keep the nausea away though.

    Day 6 – Wednesday 3rd March 2010
    Increased to my full dose today, 1g every 6 hours. Felt quite nauseous this morning, possibly aggravated by the Australian summer heat. Otherwise fine, no significant side effects this afternoon or evening.

    Day 13 – Wednesday 10th March 2010
    Side effects overall have been minimal to non-existant now that I’m in the rhythm of things. I seem to have somewhat more myalgia in my legs than usual on some days, but the nausea has completely disappeared.

    3 Weeks, 4 Days – Monday 22nd March 2010
    Side effects have remained negligible.
    I’ve so far had 4 days (including 3 in a row this weekend) when I’ve felt somewhat better (less brain fog, less fever) than I would normally expect to under the circumstances (level of sleep, rest, activity etc.). Certainly nothing concrete, and I’m very tired now from the weekend, but it’s got me hopeful (albeit very cautious). Time will tell.

    4 Weeks, 4 Days – Monday 29th March 2010
    I’m wondering if I spoke too soon. I’ve had an awful week with a bad reaction to the Chiropractor, and a mild cold. I seem to be fully recovered from those, but I’m no better than I would usually be.

    1 Month, 2 Weeks – Sunday 11th April
    I’m a little bit excited and hopeful today.

    Unfortunately I’ve had a couple of weeks or so of mostly bad days. Mainly from stress/fatigue from uni assignments, and another cold (although no sinus).

    However I’ve had another weekend where I’ve felt noticeably better than I would normally feel. My physical energy has still been as low as normal, but my brain fog and fever seem to be markedly less.

    I went to my sister’s for a board games night last night (which is fairly typical of my social activities). Normally by the end of the night I’d be really struggling to function mentally, despite having plenty of Coke/Coke Zero for caffeine. However last night I was still able to concentrate until the end! Although admittedly I still had my normal amount of Coke/Coke Zero (naughty to have it at night, I know!)

    And normally on a Sunday I’d just be recovering from the night before, and feeling pretty crappy. However today, I went to K-Mart and actually enjoyed wandering around and browsing for 5-10 minutes, rather than just being fatigued and brain-fogged from driving there and standing up/walking.

    So I’m very hopeful. It’s still very preliminary stuff, but I’m very hopeful for things to come :). If it gets much better than this, and for more of the week (it’s mainly been weekends so far), I think I’ll soon be able to rule out the likelihood any placebo effects.


    1 Month, 3.5 Weeks

    Still going well. My bad days have been noticeably less severe. On Sunday, I was far less run down than I would normally expect to be (normally a bed day for me). I don’t know whether my overall functionality has increased, but I’m feeling symptom relief, for sure.

    I’ve done a little bit of walking too, but I’m making very sure to not overdo it, and still get plenty of rest.

    Last night, I felt good enough to just go and sit on a chair in the garden for about half an hour. Normally I would be run down by this, but actually felt somewhat rejuvenated afterwards.


    2 Months, 4 Days

    I’ve had a couple of good weeks being on uni holidays, and one good week back at uni this week. I’m still having ups and downs, although I haven’t had any of my really bad ‘bed days’ that I used to get.

    I’m generally using the terms ‘seemingly’, ‘noticeably’, or ‘significantly’ better. Most days over the last 3 weeks, I’ve felt seemingly better than I would usually feel, and at times I’ve felt noticeably better.

    Certain tasks have felt less overwhelming lately, for example supermarket shopping. Normally shopping would leave me quite fatigued and brain fogged, and I’d just want to get back home as soon as possible and not talk to anyone. However lately I’ve been much more friendly and talkative to the check-out people as I don’t seem to feel as bad. Also, once I got home, I’d usually only unpack the dairy and ‘cold stuff’, and leave the non-perishables in the bags until later when I’m feeling better. Lately I’ve been unpacking most/all of it straight away.

    I certainly seem to be having quite a good patch at the moment. I’m not 100% convinced yet that it’s from the tablets, once I’m ‘significantly’ better I’m sure I’ll think differently. However I’m convinced enough that I’m keen to go beyond the 3 month mark (although I don’t need to make that decision yet).


    2 Months, 3 Weeks

    Still feeling good. Overall my good days are better than usual, and my bad days are better (and far fewer!) than usual.

    While I still need to have plenty of bed rest in the late afternoon, my immediate exertion related symptoms (mainly fever, myalgia and exacerbated brain fog) are significantly delayed and reduced.

    My day after symptoms are also significantly reduced (hence fewer ‘bad’ days), and I don’t seem to be as susceptible to relapses.

    Looking forward to more improvement, although it definitely feels like a slow process at the moment. I gave in to temptation the other week and tried to do a reasonable amount of exercise, but I’m still too brain fogged to function properly the day after.


    3 Months, 1 Week

    I’m feeling great in general. I’ve been going for walks and haven’t felt too bad afterwards. I’ve been able to do more in a day without symptoms appearing.

    Unfortunately I’m having a relapse at the moment from a mild infection that’s hung around for over a week, and doesn’t want to go away. The CFS symptoms however only really appeared after a week of infection rather than instantly, so I’m very happy about that.


    4 Months
    Overall – noticeably better

    Brain fog – significantly better
    Fever and myalgia – noticeably reduced
    Ability to function in low energy activities for more hours in the day/week – noticeably better

    Ability to engage in higher energy activities – no notable improvement.... yet :)


    5 Months

    This has been a pretty bad (Australian) winter. I picked up an infection earlier, which lasted 3 weeks, and caused a CFS relapse. Then after 3 weeks of feeling great, the infection seemed to relapse, and cause another 2.5 week CFS relapse! Very frustrating.

    Overall, when I feel good, I feel great, same as at 4 months. I just wish I could completely get rid of this infection, and not have these relapses.


    (Almost) 6 Months

    FINALLY!!!

    After 2.5 months of on and off relapses, it seems that I’ve managed to completely shake this infection. I’ve been free from it for at least 2.5 weeks, and the last 1.5 weeks have been really wonderful health-wise. It seems that I’ve had another bump up in health compared to 4 months.

    I had a social night last night and was so clear-headed that I was able to completely keep up with the conversation for about 3 hours! I’d forgotten how much I like to talk in certain situations!

    Still spending most of my time on the couch, but I’m enjoying how easy basic errands and basic physical tasks are now (in moderation).

    I’m trying some light exercise again, which is probably a bad idea, but I think I’ll be ok if I go easy.


    7 Months

    Still going great. I’ve maintained the improvement from 6 months, and improved again! Up until now the improvement has allowed me to do more low energy activities through-out the day/week (eg being on the computer), but I think I’m starting to get to a point where my ability to do medium/high energy activities might be increasing.

    I’ve been trying to do walking, and recently managed a ~30 minute walk 4 days in a row and actually feeling quite good during them(!), although I didn’t do anything else active on those days. I was quite rundown on the 5th day after over doing it on the 4th, but it resulted more of a ‘couch day’ rather than a ‘bed day’ which I used to often need.

    I used to absolutely love walking (the freedom, exploration and endorphins mainly, I think) when I was well, so I hope this isn’t just a big tease, and I’ll really be able to get back into going for longer walks eventually.


    8 Months

    Still doing well. I’ve been avoiding heavier cardio exercise, but have been able to go for a light ~15 minute walk everyday with really no issues at all. I’ve also been doing light weights without too much trouble (a little bit run down the next day still).

    One brand new development is that orthostatic intolerance has improved dramatically. I haven’t pushed the boundaries to see how long I can stand for, but certainly short periods of standing don’t bother me anymore!


    9 Months

    Nothing much to report, about the same as at 8 months. Hopefully this is not the beginning of the dreaded plateau! :)


    10 Months

    Still seem to be improving. I’ve been able to go for longer slow-pace walks without paying for it the next day, and while I’m still clearly prone to relapses/crashes, I’m able to recover from them in 2-3 mostly couch/bed days, rather than 2-7 full bed days.


    11 Months

    I actually still feel like I’m improving. I guess the only specific difference is that this month I feel more resilient to relapses. I haven’t had one in quite a while despite doing light walking, dieting, and fairly regular (but limited) weights.

    I’m still not working, although I’m looking now (specifically for something that uses my uni degree, which might take a little while).







    Updates from grant107:

    2 Months
    Been on Valtrex for two months. I am just getting over a bout of shingles. I am only taking one gram twice a day. When I try to increase to three times a day I have side effects. I have been very disabled and home bound for a year but the valtrex seems to be helping. Usually it takes very little to put me in a relapse but recently I started to go into one and recovered quickly. That has happened twice. I am going to stay on it for as long as I am improving. Unfortunately, I just learned I have hit the doughnut hole and the drug is costing me $249 a month. I may buy from Canada pharmacy if possible.
    Jean

    4th Month
    I am in my 4th month of taking valtrex. My sleep problems are the same as before I started the drug. When my symptoms are worse the less I sleep. I started the valtrex for shingles and have continued it because I believe fighting the zoster virus was making my cfs worse. I do not seem to go into a crash as fast as before, but when I do crash it lasts just as long.

    4 Months
    I have been on Valtrex 4 months. I do not crash as often but other than that I see no difference. Maybe I'll try famvir.



    Updates from muffin:

    2nd Month
    Just re-started Valtrex (second month) after not filling it or taking it for about two weeks. I "think" the side-effect I am having again with Valtrex is the heavy non-stop sleep and total lack of energy. Sleeping again up to about 18 hours a day and so not able to wake up. This happened the first few weeks of the Round One Valtrex.

    Does anyone else have heavy sleeping issues on Valtrex??? I mean far worse than their normal CFIDS sleep issues? I don't seem (yet) to have emotional/anger issues like I thought I did the first month but then I don't have energy to do much or interact much. But this sleeping is so out of control that nothing gets done and the "To Do" "Must Do" list is getting longer and longer.

    Wonder if the heavy sleeping is a "kill off" affect from the Valtrex. Thoughts????

    3 or so Months
    I have been on Valtrex for about 3 or so months. Right now I feel like I have some odd virus and can't figure out if I do in fact have a virus or if it is the Valtrex creating side-effects or there is a die-off effect going on and that's what's making me feel so sick and "odd".

    Was going to go lay down but saw this and figured I wanted to hear what others said as well. I wasn't having problems with Valtrex except when I went for 2 weeks between refills and then had to go through some weird symptoms unti it passed and then I seemed to be OK. But now something has gotten a hold of me and I can't tease out real virus from Valtrex (side-effects or kill-off).

    So, ideas, thoughts, documents, anyone? Thanks - Nap time.

    3 Months
    Three months of Valtrex and not feeling much of anything. Still sleeping odd hours, still exhausted.
    Glad that others are doing well on the med. Those on Valtrex please continue to keep us updated. Cheers.
    jsfm and redo like this.
  2. oerganix

    oerganix Senior Member

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    Thanks for sharing your journey with us. Best wishes for a good outcome!
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good luck mate, yep the system in australia stinks as far as testing go's, your sort of out on your own. give it a good 6 months before you say they are or arent working. I had lymphocyte subset test done prior to taking av's, this can give u an idea if your immune system is fighting a virus, elevated cd8 can indicated ebv or cmv. http://www.4rx.com/online-pharmacy/categories/herpes/generic-valacyclovir-valtrex.html this link maybe of interest to you and save you some dough, av's are very pricey here in aus.
    cheers!
    good luck mate,
    12months has done me wonders.
  4. mikipe2

    mikipe2

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    Thanks for your kind words.

    I was planning on trying it for 3 months, and continuing on to 12 months if I'm noticing a difference. But you reckon try for 6 months first?

    My dad's a pharmacist, so I'm very fortunate to get it provided by him. I'm not sure what he's paying wholesale, but he's happy to just get them for me without charging me! Very fortunate indeed!

    The plan is to increase to 4g a day later this week, as used in the Dr Lerner study (for my body weight). What dosage did you use heapsreal?
  5. mikipe2

    mikipe2

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    Australia
    Update:

    Day 4 - Monday 1st March 2010
    Getting the munchies all day! Seems to keep the nausea away though.

    Day 6 – Wednesday 3rd March 2010
    Increased to my full dose today, 1g every 6 hours. Felt quite nauseous this morning, possibly aggravated by the Australian summer heat. Otherwise fine, no significant side effects this afternoon or evening.


    (I'll add each update to Post #1 as well).
  6. Misfit Toy

    Misfit Toy Senior Member

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    I seriously need a family member who is a pharmacist! I am going to be trying valtrex too. Was on it before but only for a month. Wish you much success!
  7. mikipe2

    mikipe2

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    Thanks so much Spitfire!

    Whether it works or not, I just know that I need to try it, and try it properly.
    And yes, I'm very fortunate to have a father who's a pharmacist. It's always been convenient in the past (free shampoo etc! lol), but now it's become very very useful!
  8. mikipe2

    mikipe2

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    Australia
    Day 13 – Wednesday 10th March 2010
    Side effects overall have been minimal to non-existant now that I’m in the rhythm of things. I seem to have somewhat more myalgia in my legs than usual on some days, but the nausea has completely disappeared.
  9. mikipe2

    mikipe2

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    3 Weeks, 4 Days – Monday 22nd March 2010
    Side effects have remained negligible.
    I’ve so far had 4 days (including 3 in a row this weekend) when I’ve felt somewhat better (less brain fog, less fever) than I would normally expect to under the circumstances (level of sleep, rest, activity etc.). Certainly nothing concrete, and I’m very tired now from the weekend, but it’s got me hopeful (albeit very cautious). Time will tell.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi mikipe2, did you get that private message i sent you, about dosing etc
    Also spitfire did you get my pm as well, i talked to that company about your order, i hope it helps, let me know how you go, cheers.
  11. mikipe2

    mikipe2

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    Hi heapsreal,

    Thanks for that. I had a quick read last night, just about to reply now.

    Cheers
    Mike.
  12. mikipe2

    mikipe2

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    4 Weeks, 4 Days – Monday 29th March 2010
    I’m wondering if I spoke too soon. I’ve had an awful week with a bad reaction to the Chiropractor, and a mild cold. I seem to be fully recovered from those, but I’m no better than I would usually be.

    (Note: all updates are added to Post #1 as well)
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    soldier on mate, give it that 3 months, then turn around and see where you were before you started. Look into a few things to strengthen your immune system, especially if your getting colds, astragalus, echinacea and lots of vitamin c, eat'm like lollies. If no luck, try those other things i emailed you about.

    cheers!!!!
  14. mikipe2

    mikipe2

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    Thanks heapsreal! Three months is the inital goal before I decide to continue or not.

    That's a really good idea, I should get back into Echinacea and Vit C.
  15. oerganix

    oerganix Senior Member

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    Thanks for sharing this with us. Good luck!
  16. mikipe2

    mikipe2

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    1 Month, 2 Weeks – Sunday 11th April
    I’m a little bit excited and hopeful today.
    Unfortunately I’ve had a couple of weeks or so of mostly bad days. Mainly from stress/fatigue from uni assignments, and another cold (although no sinus).

    However I’ve had another weekend where I’ve felt noticeably better than I would normally feel. My physical energy has still been as low as normal, but my brain fog and fever seem to be markedly less.

    I went to my sister’s for a board games night last night (which is fairly typical of my social activities). Normally by the end of the night I’d be really struggling to function mentally, despite having plenty of Coke/Coke Zero for caffeine. However last night I was still able to concentrate until the end! Although admittedly I still had my normal amount of Coke/Coke Zero (naughty to have it at night, I know!)

    And normally on a Sunday I’d just be recovering from the night before, and feeling pretty crappy. However today, I went to K-Mart and actually enjoyed wandering around and browsing for 5-10 minutes, rather than just being fatigued and brain-fogged from driving there and standing up/walking.

    So I’m very hopeful. It’s still very preliminary stuff, but I’m very hopeful for things to come :). If it gets much better than this, and for more of the week (it’s mainly been weekends so far), I think I’ll soon be able to rule out the likelihood any placebo effects.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good to hear, suttle effects are what i noticed too, brain fog and crashes were reduced early for me as well.
  18. mikipe2

    mikipe2

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    Awesome. Thanks heapsreal :).

    Good to know that it lines up with other people's experiences. Hopefully it continues, I've got a hell of a long way still to go! :)
  19. anncavan

    anncavan

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    San Francisco, CA

    Hey Mikipe2,
    Glad to hear things are improving! I wanted to comment just on your note regarding Echinacea. I've heard that it's not good for CFS patients. I'm not a doctor, so look into it more. But from what I've heard, echinacea is taken as someone feels a cold coming on to boost your immune system. People with CFS/ME/MS already have an immune system on overdrive that can't keep up as it is (That's why some CFS patients never get true sinus colds like they had prior to CFS). Anyway, then the theory goes that echinacea can push the immune system too far. Maybe google a bit more or check with your doc...

    Take care!!!
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    seems to be 2 types of cfser's, ones that never get sick except cfs and those that catch everything going. My doc recommended immune boosters after one of my lymphocyte tests came back with low cd4/cd8 lymphocyte ratio which he said was showing my immune system at the time was tiring and needed stimulating. So i suppose for most its a guess, if it makes your symptoms worse then maybe like u say your immune system is in overdrive already.

    Good point anncavan. I wonder if those in overdrive are the tired but wired types and those who catch all the bugs are the sleep all day types. Most of the time i have been the tired but wired type and most of my lymphocyte tests show that my immune system is overactivated then underactivated. mmmm interesting

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