My experience with Valtrex

[mikipe2]

Thanks anncavan and heapsreal.

I'm not sure what to think. It sounds like I really should get a lymphocytes test. I know that for the first 4-ish years of CFS, my glands were always substantially enlarged, but over the last few years, they've felt more normal (although I don't actually know what normal is!).

Also I don't know if I fit into any of those categories, heapsreal. Early on I was definitely the tired but wired type, but year by year I learned to accept more and more that I need to rest more and more, not just when I have flares, but all the time (on and off), not just push through with another coffee. Although I've never heard of the 'sleep all day' kind of CFS patient. I thought everyone was like me: fatigued and brain fogged, but not particularly sleepy.

I'm usually the type to catch eveything that comes along though.

 

[ukxmrv]

I was "catch nothing" for the first 13 years and then "catch everything" for the next 13 or so. Health no better now.

Valtrex was good (a 1gm per day) as the terrible "heat" I suffered from particularly at night improved within the first week. Less sore throats but no greater physical functioning. Still getting severe intermittent flu symptoms that strike for no apparent reason.

Come to think of it the "catch everything" years correspond to when I became almost permanently "hot". Temperature by thermometer low but I feel very hot and needed to wear summer clothes (even when it snowed)

XMRV+

 

[heapsreal]

how have u been traveling on valtrex mikipe2, feeling any improvement??

 

[mikipe2]

Thanks heapsreal, been good. Sorry I haven't updated in a while. Here are the latest 2 entries:

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’d 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).

 

[heapsreal]

good to hear your doing well, i understand u using the words seemingly, noticeably etc as this disease is so up and down its hard to know if your just having a normal up, thats why it took me 3 months to really know it was working for me. The experiences your having are similar to what i had, that is the fatigue is still there but just at a greatly improved level. I still have 'crashes' but there not as intense or last as long as they did pre av's. It should make uni abiteasier for you and give u abit of light at the end of the tunnel.

Keep us updated.
cheers!!!

 

[mikipe2]

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.

 

[heapsreal]

good to hear your doing well with valtrex, slow and steady wins the race. A cfs study im involved through bond uni on the gold coast , we got results back the other day of our initial blood tests and the cfs group appear to have poor natural killer cell function, so they said this can make us more likely to suffer from chronic and reactivated infections, so this is probably the reason why some of us respond to antivirals as ebv could reactivate in some of us.
keep the updates coming,
cheers!!

 

[maryb]

Can I ask if you are using Valtrex or the generic version? I was prescribed Valtrex last year for a EBV infection, I felt much better after the 10 day course, so much so I sent of for a generic batch(Cipla), I had what I thought was a re-activation of the EBV symptoms recently, had a blood test soon after and waiting for the results, but in the mean-time started on the meds I had, 1000mg a day, made me feel worse immediately, but I persevered for 5 days, after stopping had major gastric pain, (could it be a heart attack type severity!)that is easing after 7 days but still getting major dizziness and feeling bad. Anyone any thoughts on the differences in medication, I can't afford to take Valtrex long term, it was about 200 for the 10 days prescription last year. Sick of being fed up of being dizzy:-(

 

[heapsreal]

http://www.4rx.com/online-pharmacy/categories/herpes/generic-valacyclovir-valtrex.html
This is where i get my valtrex from and havent had any problems, takes about 4 weeks to get order though.
My initial 12 months was on famvir(not generic) and changed to generic valtrex for financial reason and with similar results.

 

[maryb]

Thanks heapsreal, my doc never mentioned prescribing Famvir so don't know whether it is as popular over here, I got my generic Valtrex from 4rx too. Everyone is so different with meds aren't they?
I'll wait and see what the tests show, if it is an active EBV its back to the drawing board I think!
BTW anyone noticed their hair thinning on the anti-virals? I used to have a thick mass of hair, not so now, maybe just the illness but it seems to have gone thinner since the last time I took the original Valtrex:-(

 

[mikipe2]

Hi maryb,

I'm taking brand name Valtrex, 1g every 6 hours. Although I do wonder whether it would be just as effective to take half that.
I haven't noticed any hair thinning, or any notable side effects now that I'm taking it regularly.
It sounds like there might something else going on. You'll have to speak to a doctor about the pain and dizzyness.

Thanks for that info re: NK cells in the study, heapsreal. I think that lines up with other studies overseas doesn't it? Assumedly XMRV affects NK cells and other parts of the immune system, allowing EBV, CMV or HHV-6 to become chronically active (just EBV in my case). So I'm expecting that no matter how much better I get from a 12 month course of Valtrex, I might need to stay on some dose indefinitely. It'll be interesting to see what happens.

Mike.

 

[maryb]

Hi Mike thanks for replying, I also felt better last year when taking the Valtrex, but this time its been the generic version and it made me feel worse? As soon as I stopped taking it the dizziness came back, its one of the worst symptoms of this chronic EBV for me. So my dilemma is whether to start taking this med again, I can't afford to buy the Valtrex as it is on private presciption only here, I can get the prescription no problem though. At least I'm dizzy but upright

 

[mikipe2]

I wish I could help you out! I feel quite helpless for you as I just don't know much about Valtrex, really.

All I can say is that I made sure to put my age, CFS symptoms, length and severity of illness (etc.) in post one, so that others can see if their situation lines up vaguely with mine. Otherwise I don't really know why Valtrex and/or generics work for some people and not for others.

Also in my situation, I didn't notice any improvement at all in the first 3 weeks (except for one particularly good day), so maybe your initial 10 day improvement was actually clearing up something else? According to Wikipedia, Valtrex is more active against other herpes family viruses. I believe Valtrex doesn't actually kill EBV, but instead reduces EBV infection of new cells. That's why it takes so long to be effective in CFS, because you have to wait for the old infected cells to die off. I believe there was a study done in vitro that showed this, but I don't have a link.

 

[ukxmrv]

Maryb,

I suspect that not all the Cipla versions sold over the internet are not the "real thing" as I have responded differently to Cipla drugs sold through different suppliers on the internet. One from an Indian website was fine then another (in 500mg tablets) didn't work at all from a Canadian website.

Sorry to not be more help. Sounds like a terrible reaction especially after you were helped by the 10 day course.

 

[mikipe2]

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.

 

[heapsreal]

good to hear, must be something in the air as i have a bug at the moment as well. Have you mentioned how your going to your doc, whats he think of your success??

 

[mikipe2]

I'm seeing my doc in a few weeks. I'm not really sure what he'll think. As I said in my first post, he recommended against me taking Valtrex due to side effects and no real improvement in those he's prescribed them to in the past (although I have no idea how long they took them for, or whether they had EBV, CMV and/or HHV-6). When I had decided to try Valtrex I took an abstract of one of Dr Lerner's earlier studies with me to the appointment. He looked over it and made about three negative comments about it, including one claiming that the results lined up with what you'd expect from placebo (60%???). Although he misinterpreted the 40%, not realising that they were the EBV/CMV coinfection controls.

I know when I saw him last time, I said that I'd had times when I felt noticably better, and he didn't respond, but was happy to fill my prescription. So I get the picture that he thinks any improvement is likely to be placebo. At this point though, other than my current relapse, the improvement is far more than could be explained with placebo. Although admittedly when I went to him last time, I wasn't 100% convinced myself that it was working, but very hopeful.

 

[Misfit Toy]

I just got the generic of Valtrex. How many pills do you take a day? I have been taking 1 of the 500 mg.

 

[mikipe2]

Hi The Spitfire,

I started small, but quickly worked my way up to 1g every 6 hours (ie 4g a day). And yes, that means I usually wake myself up in the middle of the night to take a dose.

Good luck with the Valtrex! I hope you get results too.

Mike.

 

[muffin]

Been on Valtrex for one month now

No side-effects, but can't say that I see any real difference --- yet. Need to push my internist into getting me another several months. He is NOT a fan of anti-virals and pooh poohs XMRV, etc. He and I have been "battling" now for over 10 years (of my 16 years of CFIDS) over anti-viral use.

For those who have been on Valtrex for a good long period, please continue to update us on how you are feeling. If Valtrex knocks down or out even one of our many viruses then that may be helpful. At this point, anything that gives me just a little bit more of normal is worth going for. Thanks.