My experience with Valtrex

[grant107]

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

 

[muffin]

I don't know if it is the Valtrex or the LENS therapy or just ME. But i seem to be in an angry mood and had a rage fit yesterday that was not the norm. I am very mad at being so sick for 16 years this August and sleeping my life away, but my mood and the rage fit don't fit my personality. My poor husband was frightened by how mad I was and I was DRIVING at the time on a highway!

Anybody else having odd personality reactions to Valtrex? I am at the end of my first month and have to beg my internist to get me more. But I don't know if it helping, hurting or just costing me $230 a month (with insurnce) with no real benefit. Thoughts????????

 

[ukxmrv]

Getting mad is not necessaily such a bad thing as a symptom occasionally. Being ill for 16 years and "sleeping your life way" is entirely an appropriate thing to be mad about.

I'm impressed that you can drive with this disease! Did anything set you off in the car?

If you are having uncontrollable fits of rage at the wrong moment (like driving!) and it is dangerous - that is cause for worry.

I've been taking Valrex for about 9 months and no emotionals side-effects that I can see.

 

[grant107]

Valtrex does not effect my emotions. I have no side effects with two grams a day.
Jean

 

[muffin]

Thank you for responding

Yes, there were several things that had set me off before I got into the car to go get my husband at the airport. The heatpump/AC had just gone out right before I left the house ($$$), and other things were costing insane amounts and draining the bank account. There were a couple of other things that irritated me as well but my mood had been irritable for several days before this rage fit.

Yes, when I think about the last 16 years wasted sleeping it just pushes me back into a foul mood. There is no getting back those years and short of a miracle I see this disease for ME as progressive.

Yes I can drive but must do so ONLY when I am awake and not for distances past 10 miles. I am basically housebound since I am NOT awake enough to drive and do sleep much of the day/night (poor sleep at night).

I don't know anymore what causes any of these odd reactions. Could be meds, could just be the damage done to the brain/chemicals/hormones/etc.

Thanks for responding!

 

[ukxmrv]

I noticed that my moods are severely affected by taking antibiotics. An ex-partner noticed that I became bad-tempered and depressed whilst on them. I try to avoid antibiotics now and my mood is usually good.

I've been very lucky on the Valtrex but we are all different and it could be working on your brain or something similar.

Really don't blame you for flipping out generally though. 16 years, a limited life and money worries would get to anyone.

Hope that the heatpump/AC can be fixed and doesn't break the bank!

 

[mikipe2]

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

 

[muffin]

Started my second month of Valtrex - 2 week lag, now sleeping non-stop

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????

 

[ukxmrv]

Hi Muffin,

No sleep problems on Valtrex for me. I am on 1000mg per day in one dose.

 

[mikipe2]

Hi Muffin,

No sleeping problems here. In fact I seem to be able to get by on slightly less sleep, and I seem to be able to relax and get to sleep much more easily than before.
I wonder if Valtrex is interacting with other drugs you might be on?

Mike.

 

[heapsreal]

hi mike,

good to see your doing so well, keep it up. Ive dropped back abit of late, i think it might be the valtrex as im on too low a dose to have a good effect, so have changed back to famvir which is what i made my original improvement with. Its expensive having cfs, trying to juggle treatments to fit the budget.

cheers!!

 

[mikipe2]

Hi heapsreal,

Famvir was suggested to me recently as I believe it's going generic very soon here in oz. However I've just ordered generic Valtrex from a Canadian pharmacy so that I can continue what I've been having, and what's been working. Now that generic's are available, I'm excited about being able to stay on Valtrex for longer than 12 months. I read somewhere that Dr Lerner was on Valtrex for around 6 years, and the average 'responder' in his latest study was on antivirals for 2.5 years (assumedly at full dosage).

Yep, still seem to be improving, slowly but surely. I'm sorry to hear that you've not been doing well. Are you continuing with full time, or changing to part time?

Mike.

 

[heapsreal]

im plugging away fulltime for the time being, hopefully the famvir does the job. Interesting that famvir will come off it patent, it cost about $195 for 30x500mg tabs, internet can get famvir for 90x500mg for $269.
Yes i think with av's its a long hall treatment course. Will valtrex be going generic in australia as well?

 

[mikipe2]

Yeah, Valtrex is the same kind of thing.
It's around AU$220 or so for 42x 500mg (~$9.50 per 1000mg) although I'm paying less wholesale.
Or I just paid AU$357 for 180x 1000mg (~$1.98 per 1000mg).

Looking at it like that, GSK must have an enormous mark-up.
I checked the onilne pharmacy and it seems legit, I'm trusting that they're not counterfeit!

Valtrex will become generic in oz, but not until 2011 unfortunately.

 

[mikipe2]

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.

 

[heapsreal]

Hi Mike,
slow and steady wins the race, i know what u mean about the aussie winter bugs, it got a hold of me too. As far as relapses go, look back at what you were doing, sometimes when feeling better its easy to over do it. Ive been back on famvir now for about a month and feeling alot better, theres definately a sub group that improve on av's. I ve been on this supplement since getting the winter bug http://www.martinandpleasance.com/ki.htm and i think it has helped but next year before we hit winter im going to start it, i think it might be a better preventative thing for colds and flu's, maybe abit late when u already have it.

cheers!!

ps, hows the studt going?

 

[grant107]

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.

 

[mikipe2]

Hi heapsreal,

It's definitely been the infection that's caused the relapses. I've never had a winter like this, the infection just stays and stays no matter how much bed rest I get. It's been really depressing after feeling so good and having such hope.

I ended up getting astralagus and a vit c/zinc etc supplement. I stopped because the (liquid) astralagus was making me nauseas, and you're probably right, it's probably too late!

The study's gone well when I've been well, but I haven't been able to do my exam due to the relapses. I've got one last chance tomorrow, which I think will be ok. However I'm looking at reducing my load this semester.

How work going for you?


Hi grant107,

I hope Valtrex is going well for you. Do you think you've noticed improvement since the 2 month mark? I wonder if it would take longer for you if you're particularly sick, and only taking 2g/day. All the best!

Cheers
Mike.

 

[*GG*]

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.

Do you take Vitamin C and D? How about LDN?

 

[mikipe2]

Do you take Vitamin C and D? How about LDN?

I've been taking Vitamin D, and only recently been taking zinc, vit c etc. I'm not sure what LDN is .

Normally I've been able to get rid of colds/infections within around 48 hours or so by just going to bed, otherwise it would never last for more than 4-5 days. This one has been a particularly nasty clinger, that stayed no matter how much bed rest I gave it, but worsened if I didn't rest. My sister is about 80% or so recovered from CFS and the same infection stuck with her for over 3 weeks. It's just a nasty infection that I'm hoping to be completely rid of soon .