Questions about Famvir

[purrsian]

I started taking Famvir approx halfway through March. I have 250mg 3x per day. I haven't noticed side effects aside from diarrhoea on first day (I do have some current GI issues though). I'm not really sure if I've noticed any benefit though. How long does it usually take to see an effect?

It's just it's a very expensive drug to take for long. I'm currently getting 1 week's worth at a time, costing me $30 to $45 (AU) each time. Massive difference in prices, so I really need to narrow down which chemists to get it from.

I haven't been too well so far this year and am getting a little down about not being able to contribute much to my household (don't work, my only contributions are cleaning here and there) and struggling to keep up with my part time study. I'm trying to get on disability to make things easier, but it's taking so long to convince the doctor to actually do anything about it.

Just looking for any further insight about Famvir and what kinds of effects it should have and how long you have to be on it to see any effects.

 

[kangaSue]

Do you qualify for a Health Care Card so you can get the full concession rate on scripts.

Failing that, do you qualify for an Authority Script (not sure what you need to have to qualify) where you can get 56 tablets at the PBS rate of $37-80.

Option 3 is to order 800mg Lovir (Acyclovir) from inhousepharmacy (35 tablets for AUD $60-30) and quarter each pill if a reduced daily dose will still do the job.

 

[drob31]

What virus are you going after with Famvir?

 

[purrsian]

Do you qualify for a Health Care Card so you can get the full concession rate on scripts.

Failing that, do you qualify for an Authority Script (not sure what you need to have to qualify) where you can get 56 tablets at the PBS rate of $37-80.

Option 3 is to order 800mg Lovir (Acyclovir) from inhousepharmacy (35 tablets for AUD $60-30) and quarter each pill if a reduced daily dose will still do the job.

I unfortunately don't qualify for a health care card at this point, unless I can finally get on disability. Which I'm sure I do qualify for, it's just hard work getting a doctor to actually commit to doing the paperwork - they all say they will do it, then just never get around to it even when I ask multiple times.

I don't actually know what an authority script is, so I'll have to look that one up to see how to qualify for it.

Thanks for the info about that plus about the inhousepharmacy one - good option if I can't get anything else.

What virus are you going after with Famvir?

It's more of a "doctor doesn't know what else to try but has heard it helps some people" kind of thing. I have tested positive for having EBV at some point in the past, but didn't test positive for any of the other standard tests done when diagnosing CFS.

 

[JES]

Well I have read people on these forums say it may take up to a few years for these type of antivirals to reduce the herpesvirus levels significantly enough. To me personally if something hasn't shown improvement in a month or two I usually stop it, so I would at least not go for over half a year at that price if no benefits are seen.

There is currently a phase 3 trial being conducated regarding use of famvir and celecoxib combined for reducing fibromyalgia (source). Some people interviewed on this combo improved within a couple of months, but generally speaking it seems success rate with famvir on this forum has not been so great.

 

[kangaSue]

An issue to consider with treatment is that it only apply to active viruses so latent viruses can survive despite drug therapy.

I don't actually know what an authority script is, so I'll have to look that one up to see how to qualify for it.

A lot of meds can have an authority script where a specific condition is known to require more than the standard amount of a medication for a chronic condition, that can be for simple things even like reflux (double the daily amount of acid blockers) or acne (roaccutane), usually first prescribed by a specialist.

Don't know for sure but I would think things like recurring Herpes or Shingles would qualify for an authority script.

 

[heapsreal]

I started taking Famvir approx halfway through March. I have 250mg 3x per day. I haven't noticed side effects aside from diarrhoea on first day (I do have some current GI issues though). I'm not really sure if I've noticed any benefit though. How long does it usually take to see an effect?

It's just it's a very expensive drug to take for long. I'm currently getting 1 week's worth at a time, costing me $30 to $45 (AU) each time. Massive difference in prices, so I really need to narrow down which chemists to get it from.

I haven't been too well so far this year and am getting a little down about not being able to contribute much to my household (don't work, my only contributions are cleaning here and there) and struggling to keep up with my part time study. I'm trying to get on disability to make things easier, but it's taking so long to convince the doctor to actually do anything about it.

Just looking for any further insight about Famvir and what kinds of effects it should have and how long you have to be on it to see any effects.

You will probably find it cheaper online. I was paying $200 a month the first year. It was helpful but too costly to continue and thats when i started looking at overseas pharmacies(approx half price) that were much cheaper. I kept my prescription on hand incase it was a customs issue. Laws say you can order in a 3 month supply at once of meds.

A fair trial period is 3 months to notice something. Initial 3 months i didnt notice any big energy increases but noticed i wasnt crashing every few weeks which was a big drain on energy i guess. 6 month mark was when i felt more noticeable improvement.

If you decide to stop it might be an idea to keep a few weeks on hand and if you have a crash then give them a shot then and see if it turns things around quicker.

Remember theres several things usually broken in mecfsers, so avs might only be treating a part of the problem, for some its a major part, others a small part and some plays no part. Id also stick with famvir to start with as it seems it may have a broader range of effects then valtrex and acyclovir but consider them later on if you think they might help.

 

[purrsian]

Thanks for all the advice guys. My doctor has suggested going off them, as I've been having some pretty bad nausea and it might be from that. I've been having some weird GI stuff so far this year, so I guess it will be helpful to figure out if it was from Famvir or if it continues and is something that needs further investigation.

 

[kangaSue]

My doctor has suggested going off them, as I've been having some pretty bad nausea and it might be from that. I've been having some weird GI stuff so far this year

I've had 17 years of weird GI crap going on (nausea and vomiting and no appetite (gastroparesis),food intolerance, intestinal ischemia, bowel pseudo-obstruction) which is only getting weirder and have had extensive investigations done so sing out if you need any help with fathoming things out? I might be able to recommend a good GI too depending on where you live, the common garden varieties are next to useless if you are anything other than a classic text book case.

 

[purrsian]

I've had 17 years of weird GI crap going on (nausea and vomiting and no appetite (gastroparesis),food intolerance, intestinal ischemia, bowel pseudo-obstruction) which is only getting weirder and have had extensive investigations done so sing out if you need any help with fathoming things out? I might be able to recommend a good GI too depending on where you live, the common garden varieties are next to useless if you are anything other than a classic text book case.

Thanks @kangaSue , I'll definitely sing out if it keeps up. I'm hopeful that the worst is over - few months of what seemed like IBS, but last month has been almost normal. It would be super nice if it did not come back lol I've just finished up my Famvir, so hoping to know soon whether nausea is related to it or something else. I'm so sorry you've had 17 years of dealing with things like this - GI symptoms are definitely not nice!

 

[Hip]

I'm not really sure if I've noticed any benefit though. How long does it usually take to see an effect?

Unfortunately, according to Dr Lerner's study (see the second half of this post), you need to take Valtrex or Famvir for around 2 years in order for the full benefits to have a chance of manifesting. Taking Valtrex or Famvir for a month or two is very unlikely to make much difference.

If you want something that works faster, you might consider oxymatrine, which Dr Chia says significantly helps around 25% of patients. Oxymatrine takes just a month or so to work (if it does work for you).