Famvir- my story

[jsfm]

Yesterday was day 1 on famvir. I don't expect to having to many side effects yet but I am scared I will get more sick before I get any better. I still work (very sedentary job with flexible hours) so I am scared that I will be forced to quit working. However, I have already been needing to slow down on working, if not quit due to how ill I am.

I have read numerous posts about others taking famvir but my brain fog is so bad that I miss most of what I am reading.

Can anyone give me their rundown of side effects and the timeframe from first dose of famvir?

I really appreciate everyones advice and help.

 

[heapsreal]

Firstly try not to quit your job, first start of if u can to reduce your hours. I say this as it can be hard to get a diagnosis of cfs/me and than get disabilty payments.

I didnt get any side effects at all from famvir but took 3 months to notice the effects which initially was realising i wasnt crashing, then steadily improved from there. Cant predict side effects unfortunately.

good luck.

 

[Ruthie24]

Have been on Famvir for 7 months now. Only had a couple really bad days of side effects. Doc decreased the dose and I built up a little slower. Then I seemed to hit a "tipping point" as he described it and I was able to quickly tolerate higher doses after a few weeks.

I think it was a couple months when my family started commenting that they were noticing changes in my mental state. I didn't notice it at that point. After about 3-4 months I started noticing it and was having a pretty good time all the way around, both physically and mentally. Of course, I then started really overdoing things as my son was getting married and I started going back downhill after that. I still think cognitively things are better than they were before I started it (but not as good as before I relapsed), but physically things have been pretty challenging again.

I'm taking a fairly high dose of Famvir I think.

Good luck!

 

[jsfm]

Doc decreased the dose and I built up a little slower.

What dose did your doctor start you out on? Mine started me out on 500mg 3x/day (total 1500mg). How high is your dose now? Are your titres any better?

I am super nauseated and have loose bowels multiple times a day. I wonder if I should just take the 1500 mg all at night and maybe I won't feel so yucky.

 

[SOC]

What dose did your doctor start you out on? Mine started me out on 500mg 3x/day (total 1500mg). How high is your dose now? Are your titres any better?

I am super nauseated and have loose bowels multiple times a day. I wonder if I should just take the 1500 mg all at night and maybe I won't feel so yucky.

I would definitely NOT take the entire dose all at once, especially if you're already having side effects with the distributed dose. It's already upsetting your GI system, putting more in at once is not likely to help that. You would also be hugely increasing the amount of med in your system at one time which could be dangerous. Just not a good idea.

You should call your doc and see what he suggests before you mess around with your dosing. If you feel the need to relieve your side effects before you can talk to your doc, it would make sense to cut back on the dose until you can consult with him.

 

[Ruthie24]

Are you taking it with food? That might help. I remember having quite a bit of GI stuff at the beginning. My doc decreased my dose to 500 mg 4x a day when I couldn't tolerate the full dose at the beginning. It did get better over time, but was pretty miserable the first few weeks. Every time he increased my dose I would also have really nasty migraines as well for a few days. Eventually I got to a point where it pretty much all stopped and I could increase and didn't have any side effects. Since everybody is different you still should be checking in with your doc about your own situation.

Haven't had titers re-tested but from what he said, of the patients who respond to antivirals only around 50% drop their titer levels so he doesn't think that's necessarily a great indicator; it just happens to be one of the few that they have to work with.

Good Luck!

 

[surethom]

Where can I buy Famvir from online that will ship to the UK without a prescription as my Dr is useless & will not even talk about takin Antivirals for my EBV & CMV. Cheers

 

[maryb]

How do you know you have EBV and CMV?

 

[surethom]

I have had loads of blood test from my Doctors & a couple of months ago the blood test showed EBV & recent CMV virus loads, but all they keep saying is its a virus & antivirals do not work on them (though posts on here & other sites, some say Famvir can help & others say Valtrex can help?), they will clear up over time, but I have mild flu/chills symptoms will body & face flushing/rash & currently off work.

Been on Aciclovir for 5 months still no better, would Famvir or Valtrex work better as I have read?

 

[maryb]

Your doctor is right to some extent - much better to try to let your body heal itself from viruses if it can.
The decision to take a/virals depends on a nunber of factors and its not a good idea to take them without medical supervision. Even ME doctors don't automatically prescribe a/virals.
Doctors like Prof de M-erleir would treat co-infections first,
When were you diagnosed with ME/CFS?
Its unusual for GPs in the UK to test for viruses if they suspect you have ME.

If you've only recently become ill you may have PVFS, the best thing for this is rest rest rest and as little stress as possible.

 

[surethom]

Hi thanks for the relpy, I have been ill for the last 5 months now, but bad the last 2 weeks & have been off work since then, body does not seem to be healing self & I think it needs some help.

I have not been diagnosed with anything yet, just that I have EBV & CMV, they just seem to say it is viral & not much else.?

 

[surethom]

Been back to the Dr & he Refused point blank to try me on Famvir or any other antiviral because there are no clinical studies & he does not care about what I have read on blogs.

Help can anyone suggest any websites that I can buy Famvir without a prescription (I hear from india are the best)

 

[heapsreal]

https://www.clearskypharmacy.net/generic-famvir-famtrex-by-cipla.html
Also a thread if u search about pharmacy links as well.

 

[surethom]

Heapsreal, Many thanks, I will look at this website & have found the thread with other links. Cheers.

 

[surethom]

I have been on Acyclovir for 5 months since becoming ill, i stopped taking Acyclovir 400mg 3 x day & changed to Generic Famvir (Famtrex) 250mg 3 x a day within 2 days my sleep is dreadfull, I have been having 8 hours good sleep but now takes forever to get to sleep & feel so bad when I wake after 5 hours or so. Not sure if Acyclovir was helping keeping viruses (ebv, cmv) at bay ish or famvir reaction??

Off famvir & back on Acyclovir for now. Anyone had any sleep problems on famvir/Acyclovir

 

[Christopher]

depending on what's going on in your body, that acyclovir dosage could be way too low to be doing anything useful.

 

[ebethc]

Have been on Famvir for 7 months now. Only had a couple really bad days of side effects. Doc decreased the dose and I built up a little slower. Then I seemed to hit a "tipping point" as he described it and I was able to quickly tolerate higher doses after a few weeks.

I think it was a couple months when my family started commenting that they were noticing changes in my mental state. I didn't notice it at that point. After about 3-4 months I started noticing it and was having a pretty good time all the way around, both physically and mentally. Of course, I then started really overdoing things as my son was getting married and I started going back downhill after that. I still think cognitively things are better than they were before I started it (but not as good as before I relapsed), but physically things have been pretty challenging again.

I'm taking a fairly high dose of Famvir I think.

Good luck!

hi @Ruthie24
how did you get better "mentally" - as in brain fog? this is a big problem for me..
does famvir reduce inflammation (if that's a problem for you)..
What dose were you taking?
How long were you on it?

 

[Ruthie24]

hi @Ruthie24
how did you get better "mentally" - as in brain fog? this is a big problem for me..
does famvir reduce inflammation (if that's a problem for you)..
What dose were you taking?
How long were you on it?

I have been on Famvir for over 3 years now and still taking it. I don't remember the Famvir helping with inflammation but I also take LDN, colchicine and anti-inflammatories which help with my joint pain, arthritis and body aches.
As far as improving mentally with the Famvir, my daughter told me she "was getting her mom back". She said that I had changed a lot in both personality and mentally and after a few months of being on the Famvir, she was the one who noticed that I was more like my old self. While I don't feel like I am back to normal with my cognition, there are many days where the horrible brain fog is a distant memory. When I have a "flare" it returns but never as bad as it was.

I also added on Valcyte after about 18 months on the Famvir and noticed another bump up in functional level after that.

I'll PM you with my doses.

 

[darroo]

I have been on Famvir for over 3 years now and still taking it. I don't remember the Famvir helping with inflammation but I also take LDN, colchicine and anti-inflammatories which help with my joint pain, arthritis and body aches.
As far as improving mentally with the Famvir, my daughter told me she "was getting her mom back". She said that I had changed a lot in both personality and mentally and after a few months of being on the Famvir, she was the one who noticed that I was more like my old self. While I don't feel like I am back to normal with my cognition, there are many days where the horrible brain fog is a distant memory. When I have a "flare" it returns but never as bad as it was.

I also added on Valcyte after about 18 months on the Famvir and noticed another bump up in functional level after that.

I'll PM you with my doses.

any progress? i just started famvir and will go on valcyte later on

 

[Ruthie24]

@darroo- Sorry for the delayed response. Just traveled to see my doc and have been recovering from the trip.

I still think the Famvir and Valcyte are helpful. Have recently cut back on my doses and not doing as well. However, my doc had me doing some antibiotics for a few months as well and that has complicated things so that I'm not sure what is causing which symptoms.

Good luck with your trial of the antivirals. Hope they provide you with some relief.