Antivirals

[Strike me lucky]

So far the best treatment for me. I fit the herpes sub group very well with cmv/ebv and chickenpox again all within a 6 month period. Wow that was 13 yrs ago. Recently while trialling time off av's to see how long i could last before needing them again, which is 2-4weeks, i ended up with a sort of double whammy shingles infection first across the left side of my head and a week later along the back of my hairline. This has set my general condition back, aarrgghh

I have mostly used famvir with an 18month period of valcyte. 2009 i started avs and its kept me functioning and able to work. Theres a couple of other smaller things that help alot but thought i would mention the antivirals as they have been an important part of my treatment.

I would like to know more about the drug tenofovir which is commonly used in HIV and hepB. I have read in a few places that some HIV meds have good effects against the herpes viruses, if they get some other viruses i dont know about then great. From my research side effects seem low and it seems safer than valcyte. Just not alot of info out there showing its active against cmv, but i did come accross some info showing it was related to dr petersons favourite av 001cmx, but cant really confirm all this?

 

[Who Me?]

I'm with you @Strike me lucky I first started with acyclovir and it really helped me be able to talk (an ongoing struggle with me(). I wasn't like I was going to jump up and run a marathon but I felt less unwell. Subtle but noticeable to me.

Now I'm on Famvir and I know it keeps my viruses at bay. When I was on 500 mgs I had a viral reactivation from stress aka dentist. I had a horribel sore throat, my neck glands were swollen, and I could not keep my eyes open. One day it dawned on me it felt like mono so I slammed more Famvir and within 2 days all that crap was gone.

I have some valcyte, on my list to try, just wating to hear about SCIG. I'm at a point where I'll try anything. And no warnings necessary from the peanut gallery. I'm a big girl and make my own choices. It's easy when you have nothing to lose.

I'm also looking into the ABX aspect because of positive CPN and MPN. Not sure where to post that.

 

[Sherrilynn13]

Hi Everyone,
I'm completely new to forums in general... I have had severe ME-CFS for over 10 years now. I'm a World Trade Center survivor from 9/11/2001 and my CFS began about a year afterward (although I wasn't diagnosed for years after that!) Anyway, I've been on the Lerner Antiviral Protocol now for almost 7 months - Valtrex 4g/day & Valcyte 1350mg/day (recently decreased Valcyte to 900mg/day due to rashes and feeling like death).

Here's my question: Has anyone who has tried either of these antivirals NOT had any improvement in symptoms for the first 6-7 months but then DID IMPROVE AT SOME LATER DATE?

Thanks! I look forward to getting to know some of you!!!

 

[Sherrilynn13]

PS I forgot to add that I did have elevated IgG viral titers for all three main viruses: EBV, HHV6 & CMV (my highest levels were HHV6).

 

[Strike me lucky]

when i first started famvir i didnt notice any improvement in fatigue etc but did notice i wasnt crashing, probably close to 6 months where i could say i felt better. But then i crashed, i was pee'd off at this but while being on avs i recovered from the crash alot quicker. Subtly improvement is hard to see, many find when they stop they then realise how much it was helping.

Valcyte is tricky as it can make u feel like crap, you are starting on a high dose. Many seem to be starting on 1 tab a day and some less and work up to 2 a day. Many have found once they came off valcyte and blood work had improved that they felt alot better.

 

[San Diego]

I have some valcyte, on my list to try, just wating to hear about SCIG. I'm at a point where I'll try anything. And no warnings necessary from the peanut gallery. I'm a big girl and make my own choices. It's easy when you have nothing to lose.

Peanut gallery lol.

when i first started famvir i didnt notice any improvement in fatigue etc but did notice i wasnt crashing, probably close to 6 months where i could say i felt better. But then i crashed, i was pee'd off at this but while being on avs i recovered from the crash alot quicker. Subtly improvement is hard to see, many find when they stop they then realise how much it was helping.

I recently had to stop Famvir after about 4 months treatment (liver enzymes elevated). I stayed off for about a month, during which i went downhill pretty fast and ended up back in bed. I didn't realize that the Famvir had helped until I stopped it and the fever, fatigue, OI, etc got much worse.

I am working with my doc now to resume the Famvir and find a dose that works but doesn't kill my liver. We're shooting for 1 gram per day in divided dose. I had been taking 1.5 grams and it was too much.

 

[Who Me?]

@sdsu I just had some blood work done last week so I'll see how my liver looks. I do ok on 500 mgs famvir although I'm taking 1000 mgs now split into 4 doses / day. I pulse it occasionally when I'm feeling crap.

I had a viral reactivation from stress and famvir pulled me out of it. I know I don't want to stop it any time soon

 

[San Diego]

@Minx Thanks. I'm glad to hear people are doing well on lower doses. My viral titers had begun to fall when I was on just 1 gram a day, so hopefully I'll be able to go back to that and stay there. I'm having a rough time getting back on it, but should be OK in a couple of days if it's like the first time around.

I think Strike Me Lucky (unable to tag for some reason) said somewhere that the half life is 4 hours. I wonder if I'd take it in 4 smaller doses, like you do, if it'd be easier on my liver?

I'll be eager to hear how your blood work comes out!

 

[Strike me lucky]

@Minx Thanks. I'm glad to hear people are doing well on lower doses. My viral titers had begun to fall when I was on just 1 gram a day, so hopefully I'll be able to go back to that and stay there. I'm having a rough time getting back on it, but should be OK in a couple of days if it's like the first time around.

I think Strike Me Lucky (unable to tag for some reason) said somewhere that the half life is 4 hours. I wonder if I'd take it in 4 smaller doses, like you do, if it'd be easier on my liver?

I'll be eager to hear how your blood work comes out!

off the top of my head its 3-4hrs but it has an intracellular half life of 18hrs, whats that mean, i have no idea lol.
i have found dosing twice a day worked well and for me i didnt see any difference between 250mg twice a day vs 500mg twice a day, but thats me.

Probenecid is another med that can increase the half life of abx and avs. I dont know how much by but its alot cheaper than av's so using it with avs can make it more effective at lower doses and more economical.

 

[Who Me?]

I got some labs done so I'll have an idea of what's up

I don't really care what my viral numbers are. They've barely changed but I know without it I feel crap do why not?

I started taking 500 mg at s time becuase I felt really bad on more.

If you have s problem start really slow. Halve a tablet and do that for a few days snd deep up my 1/2 every few days.

@Strike me lucky I think dosage depends on cost. You have to pay a lot. I pay $10/ a month. So why not take more?

 

[Strike me lucky]

I got some labs done so I'll have an idea of what's up

I don't really care what my viral numbers are. They've barelyshould nged but I know without it I feel crap do why not?

I started taking 500 mg at s time becuase I felt really bad on more.

If you have s problem start really slow. Halve a tablet and do that for a few days snd deep up my 1/2 every few days.

@Strike me lucky I think dosage depends on cost. You have to pay a lot. I pay $10/ a month. So why not take more?

They do say that once your on avs that viral titres can be all over the place and at first not uncommon for them to go up.over the long term though titres should come down.

my famvir 500mg x 30 costs me $93 a month, this is a private prescription which means its not funded by the health system. If viral reactivation in cfs was recognized I wouldn't pay more than $35 a script and probably get prescribed higher doses for same cost.

I have looked online and there is nothing cheaper.

 

[Who Me?]

I think my numbers went down 3 points last time. I don't care except that it shows I'm a petri dish of viruses.

I don't know how they determine RX prices. I have 3 options for my healthcare. Two consider Famvir generic but it would still cost about $80/month. The plan I'm on it's $10/month. The quantity in the rx doesn't matter. So I could get #30 250 mgs or #30 500 and it would be the same.

 

[San Diego]

I found this interesting site regarding liver toxicity. You can look up most drugs. Here's part of what it says regarding:

Famvir:

Hepatotoxicity
Oral therapy with famciclovir has been associated with a low rate of serum aminotransferase elevations; in pooled analyses of patients on long term suppressive therapy, 3.2% of famciclovir vs 1.5% of placebo recipients had ALT elevations above twice normal. The elevations were transient and asymptomatic and resolved even without dose modification. Since approval, cases of cholestatic jaundice have been reported to the sponsor, but there have been no published cases. Thus, clinically apparent liver disease due to famciclovir must be exceedingly rare if it occurs at all.

Valcyte:

Hepatotoxicity
Intravenous administration of ganciclovir is associated with transient mild-to-moderate elevations in serum ALT levels in 2% of patients. These episodes have usually been asymptomatic and self-limited. CMV infection itself can cause liver enzyme elevations and may account for some abnormalities found during therapy. There is little evidence that either ganciclovir or valganciclovir can cause clinically apparent liver injury. Ganciclovir also has activity against HBV and HBV DNA levels decrease on treatment and can rebound when therapy is stopped, leading to an acute flare of hepatitis B, which can be symptomatic and severe.

*bolding mine
I'd sure love to see more statistics regarding liver toxicity with AV's. Is liver damage truly exceedingly rare? Is this another case where docs are treating the labs rather than the patient? I know the liver is nothing to mess around with, but neither is ME/CFS.

 

[Who Me?]

@sdsu i remember someone saying that Famvir was the least damaging of the antivirals. I think so many docs are locked into the number vs the patient.

Unless I'm in liver failure I don't know how much I care. Like you say, this isn't a disease to mess with.

I'll be able to get my labs online Thursday (doubtful either if the docs who ordered labs will call me) and see how it is.

 

[Strike me lucky]

I found this interesting site regarding liver toxicity. You can look up most drugs. Here's part of what it says regarding:

Famvir:


Valcyte:


*bolding mine
I'd sure love to see more statistics regarding liver toxicity with AV's. Is liver damage truly exceedingly rare? Is this another case where docs are treating the labs rather than the patient? I know the liver is nothing to mess around with, but neither is ME/CFS.

Famvir has been used long term for preventative reactivation of herpes viruses and is research showing upto 12 months with no issues. I think i have mostly been on it since 2009.I think i had one blood test which showed elevated liver enzymes, this could have been from the virus itself or i have have been on other meds also that could have stressed the liver or a combo of these things.

Most of the people i have read who have had abnormal blood work from valcyte have had issues with low white blood cell counts/neutrophils, i cant really recall anyone having liver issues from it. But it seems to be a big warning on testing liver function.

I think if one has elevated liver enzymes, theres a possibility that its from the viruses themselves. Have to look at other meds as paracetamol and anti-inflammatories can be hard on the liver too. NAC is a good liver detoxifier which is used in paracetamol overdoses, although its used IV, i have read studies showing oral nac is just as effective but probably a slower onset which is why the iv nac is preferred in overdoses.

 

[Who Me?]

I think I've been taking famvir for 1 1/2 years. Not exactly sure.

And I pulse between 500-1000 mgs. I can't say I notice much difference and if I stay at 500 then I have some place to go when I have a reactivation, which seem to be stress related.

I worry about a viral reactivation if I stop. I never get 100% back to where I was after one.

 

[Strike me lucky]

The last 12 months i have been going off and on avs while i was trialling different immune mods and to see if my immune system can hold back the viruses. I was lasting 2-4 weeks until viral symptoms would start and back on the avs i would go. I think i must have a low viral load now after several years of antivirals as it doesnt take me long to turn around my symptoms once i go back on avs.

Recently(couple of months??) i had an outbreak of shingles on my head while i was off av's, i was on immunovir, so this showed me immunovir just isnt strong enough to justify the cost of using it.

I took last week off famvir and by the end of the week started getting viral symptoms like brain fog, fatigue, neck glands sore, insomnia etc. I kick start the famvir off with a higher dose to start with and then drop back to 250mg twice a day. it only took a few days for things to improve. I think im just going to have to continue on famvir.

I have started using ahcc, a mushroom extract shown to increase immune function and has good research on it. So i will continue this for a few months and then try coming off av's and see if my immune system can hold things back.

Antivirals arent a cure but more away to manage cfs/me for certain subgroups.

 

[Strike me lucky]

@Minx Thanks. I'm glad to hear people are doing well on lower doses. My viral titers had begun to fall when I was on just 1 gram a day, so hopefully I'll be able to go back to that and stay there. I'm having a rough time getting back on it, but should be OK in a couple of days if it's like the first time around.

I think Strike Me Lucky (unable to tag for some reason) said somewhere that the half life is 4 hours. I wonder if I'd take it in 4 smaller doses, like you do, if it'd be easier on my liver?

I'll be eager to hear how your blood work comes out!

I came across this today in regards to half life of famvir.

Penciclovir and famciclovir

Penciclovir is an acyclic guanine derivative that resembles acyclovir in chemical structure, mechanism of action, and spectrum of antiviral activity (Perry and Wagstaff, 1995). Like acyclovir, penciclovir is first monophosphorylated by viral TK, then further modified to the triphosphate form by cellular enzymes. Penciclovir triphosphate blocks viral DNA synthesis through competitive inhibition of viral DNA polymerase. Unlike acyclovir triphosphate, penciclovir triphosphate is not an obligate chain terminator and can be incorporated into the extending DNA chain. Intracellular concentrations of penciclovir triphosphate are higher then those seen with acyclovir triphosphate. In VZV infected cells, the half-life values for penciclovir triphosphate and acyclovir triphosphate are 7 hours and 1 hour, respectively. However, this potential advantage is offset by the lower affinity of penciclovir triphosphate for viral DNA polymerase. The median IC50 of penciclovir for VZV in MRC-5 cells is 4.0 µg/ml. Because penciclovir is very poorly absorbed, famciclovir (the diacetyl ester of 6-deoxy-penciclovir) was developed as the oral formulation. The first acetyl side chain of famciclovir is cleaved by esterases found in the intestinal wall and the second acetyl group is removed on first pass through the liver. Oxidation catalyzed by aldehyde oxidase occurs at the six position, yielding penciclovir.
When administered as the famciclovir prodrug, the bioavailability of penciclovir is about 77%. Following a single oral dose of 250 mg or 500 mg of famciclovir, peak plasma penciclovir concentrations of 1.9 and 3.5 µg/ml are achieved at 1 hour. The pharmacokinetics of penciclovir are linear and dose dependent over a famciclovir dosing range of 125–750 mg. Penciclovir is not metabolized, but is eliminated unchanged in urine, with an elimination half-life of about 2 hours after intravenous administration. Penciclovir for intravenous administration has not been commercially marketed. Famciclovir is available as 125 mg, 250 mg, and 500 mg tablets. In the United States, the recommended dose of famciclovir for uncomplicated herpes zoster is 500 mg three times daily. Famciclovir doses of 250 mg three times daily and 750 mg once daily are approved for treatment of shingles in some countries and appear to be comparable with respect to cutaneous healing of herpes zoster (Shafran et al.,2004). Adjustment of the famciclovir dose is required in patients with creatinine clearance of <60 ml/min. The adverse effects most frequently reported by patients participating in clinical trials of famciclovir were headache and nausea, although these symptoms did not differ significantly between famciclovir and placebo recipients.

SDSU with your elevated liver enzymes, was it anything to do with creatinine clearance? going by the article a dosage adjustment helps correct this.
The article is a vzv/zoster but has interesting info on famvir.
http://www.ncbi.nlm.nih.gov/books/NBK47401/

 

[Who Me?]

@Strike me lucky like you I have a pretty quick response when I increase my famvir to beat down a reactivation

The problem I run into is pain when I go up fast. It subsides in a few days but During OWWWW!

I have some NK-3 which made me really ill when I first started it (too fast) so I'll be curious to see if the AHCC helps you since I think there are some similarities. Besides being freaking expensive.

 

[San Diego]

@sdsu
Unless I'm in liver failure I don't know how much I care. Like you say, this isn't a disease to mess with.

Can't live without a liver, but can't really live with severe ME either. Talk about choosing the lesser evil. Honestly, if I lapse into bed bound again and stay there indefinitely, I'll choose AV's and liver damage. Better a few halfway decent years than decades of isolation, pain, and misery.

SDSU with your elevated liver enzymes, was it anything to do with creatinine clearance? going by the article a dosage adjustment helps correct this.
The article is a vzv/zoster but has interesting info on famvir.
http://www.ncbi.nlm.nih.gov/books/NBK47401/

Because of my kidney history, we follow creatinine closely. On AV's all my kidney numbers returned to normal - haven't been that way in at least 10 years.