bad reaction to Famvir(famciclovir)

[Viktor11]

I just started Famvir, but got a terrible reaction after taking 500mg once. In the evening I felt agitation, my brain just kept speeding and I felt "out of control". Since I am very sensitive to all kinds of medication, I lowered the dosage and I took only 125mg and 250 mg for a couple of days then 375mg for two days and the symtoms returned in the evening. Has anyone felt this? What did your doctors say about it?

 

[Pyrrhus]

It is very common to have start-up effects when beginning direct antiviral treatment such as Famvir.
Patients report that it can take a couple weeks before the start-up effects disappear.

If you decide to try suboptimal doses to avoid the start-up effects, be aware that the longer you are at a suboptimal dose, the greater the chance that the virus will become resistant to the drug.

Also be aware that direct antivirals such as Famvir often have a nonlinear dose-response relationship, which means that lower doses don’t always mean correspondingly lower start-up effects.

Hope this helps.

 

[Viktor11]

Thank you for your reply. Unfortunately the side effects are unbearable. Would you know any way to "bypass" them?

 

[Sidny]

Does anyone know the precise mechanism by which antivirals such as famvir act? I mean if you’re dealing with these side effects I wonder what the drug is actually triggering in your body on a cellular level.. I believe naviuax says antivirals are "antimitochondrial” so theres probably some interruption of host metabolism going on.

Seems like lots of people on here are having horrible reactions to basic antivirals such as valtrex and famvir which is a shame.

I wish these drugs more selective and only targeted viral dna

 

[Shoshana]

HI, @Viktor11
I found these following 2 threads on our site, from last year, that might interest you:
one that comments on effects, and another that mentions 2 other options.
You could click on these links, to see if any of the info or ideas, help you.

You also might still get some other replies to this question you posted here, above.

Famvir is supper expensive, but it is one of 3 Antivirals people use in Antiviral Therapy for CFS/ME. The other two being Zovirax(Acyclovir) and Valtrex(Valacyclovir).

Until about 3 weeks after starting the protocol when i began having some weird symptoms at nights. I started feeling agitated, anxious, restless and generally a bit out of control and feeling a bit manic.

 

[Sidny]

Just found this tidbit from a Robert Naviaux interview and is the best explanation I’ve read on why these side effects happen. I think the mechanism of action is absurdly general and we need way better medicine than this

https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/


“In addition, all antivirals have metabolic effects that have nothing to do with inhibiting viral DNA or RNA synthesis directly. Many antiviral drugs inhibit the key metabolic enzyme SAdenosylhomocysteine Hydrolase (SAHH). Inhibition of SAHH causes an increase in intracellular SAH levels. SAH is a potent inhibitor of DNA, RNA, protein, and small molecule methylation. This affects both viral and host cell epigenetics, gene expression, mRNA translation, and protein stability. The inhibition of methylation reactions in the cell also affects neurotransmitter (dopamine, norepinephrine, and serotonin) and phosphatidylcholine membrane lipid synthesis, folate and B12 metabolism, and many other reactions. So by giving antivirals, doctors are not just inhibiting viruses, they are also inhibiting many host cell metabolic functions. Sometimes the inhibition of host cell functions can attenuate ME/CFS symptoms for a time, but in other cases, using potent antiviral drugs inhibits mitochondrial and methylation reactions and can delay a full recovery from ME/CFS.”

 

[Pyrrhus]

Thank you for your reply. Unfortunately the side effects are unbearable. Would you know any way to "bypass" them?

Many people find the start-up effects intolerable. Unfortunately, the only way to make the start-up effects tolerable is to temporarily lower the dose, as you have already done.

Obviously, it is somewhat risky to take a suboptimal dose of a direct antiviral, but if the start-up effects are intolerable, than it may be worth the risk, especially if you are able to eventually reach the full dose within 4-8 weeks.

If you can not reach the optimal dose within 3 months, you may consider asking your doctor about taking a break from the Famvir for 6 months, to let the virus lose any drug resistance it may have developed. Fortunately, in many cases, herpesviruses lose their drug resistance if you take a 6-12 month treatment interruption.

 

[Viktor11]

thank you all for your very kind replies.

 

[heapsreal]

I just started Famvir, but got a terrible reaction after taking 500mg once. In the evening I felt agitation, my brain just kept speeding and I felt "out of control". Since I am very sensitive to all kinds of medication, I lowered the dosage and I took only 125mg and 250 mg for a couple of days then 375mg for two days and the symtoms returned in the evening. Has anyone felt this? What did your doctors say about it?

It seems like you tolerated 250mg ok, unsure if its once or twice a day. I think 250mg twice a day has been used in studies on hvs1/2 for suppression therapy. Myself, i used 250mg twice a day for a few years before i needed to go up to 500mg twice a day.

One possibility for your symptoms is that you have lowered your viral load enough that your suppressed immune system is now able to work to some degree. Many symptoms of infections actually come from our own immune system.

Just some thoughts i had. Hope it helps.
Cheers.

 

[Viktor11]

Thanks for your reply. I’m taking 250mg once a day so far. Do you know what the most common dosage is? 500 mg twice a day? More or less?

 

[i-lava-u]

@Viktor11 I don't know what the most common dosage is, but I take 500 mg 3 times daily. I was prescribed this amount by my ME doctor (Dr. Bateman)

I don't know if it is based on individual viral load, or if it is a set protocol for everyone.

 

[Sidny]

@Viktor11 I don't know what the most common dosage is, but I take 500 mg 3 times daily. I was prescribed this amount by my ME doctor (Dr. Bateman)

I don't know if it is based on individual viral load, or if it is a set protocol for everyone.

Have you noticed any improvements on the medicine or any side effects for that matter?

 

[BadBadBear]

I started on the lower dose, I think around 250 mg per day and worked up to my full dose slowly, which for me was a gram per day. After a year and a half, I'm maintaining on 250 mg a day. If I have any sort of flareup, I increase my dose. It was pretty unbearable at the start, and every increase felt like hell. For me it got better and I have improved alot. Not a fun journey, but it ended up being worth it.

Seems like I did 250 mg at first, then occasionally bounced up to 500 mg per day, then could stay at 500 mg per day, then bounced to 750 sometimes (3 doses x 250 mg per day), then could stay at 750, then combined so my dose was 500 AM and 250 PM, then eventually bounced up to a gram. And it was miserable every time, then it would get less miserable.

 

[i-lava-u]

Have you noticed any improvements on the medicine or any side effects for that matter?

I did not have any side effects from Famvir, but I was prescribed Valacyclovir and Acyclovir first and had horrible side effects from those, so that's why I am on Famvir. I have been taking it for 18 months to 2 years ish? I don't know exactly how long, I lost track . I take it for CEBV

Improvements? Well, I still get outbreaks of cold sores and frequent low grade fevers (which my doctor is perplexed by)

But, the cold sores are not as often or as big as before. The fever part has stayed pretty much the same.

She did say that based on Dr. Montoya's research, it may take some patients up to 5 years to notice improvements, but MOST people notice improvements after about a year

In my case, I have had reactivation(s) of EBV since I had a bad case of mono in 1995 (followed by the the start of my ME/CFS)

I have VERY high viral titers, including at times, my early antigen (which, in my understanding is only supposed to be elevated the first time you get mono)

So for me anyway, that could be why it is taking so long to have any noticeable improvements. I am also mostly bed/homebound, so that could be another factor

 

[Viktor11]

Have you noticed any improvements on the medicine or any side effects for that matter?

I have only been on famciclovir for 2 weeks, and no I haven't seen any improvements. But I've understood that it can take a long time so I'm not worried.

 

[Viktor11]

@Viktor11 I don't know what the most common dosage is, but I take 500 mg 3 times daily. I was prescribed this amount by my ME doctor (Dr. Bateman)

I don't know if it is based on individual viral load, or if it is a set protocol for everyone.

Thank you for your reply. I think your dosage is what my doctor aims at too(Dr Susan Levine).

 

[Viktor11]

I started on the lower dose, I think around 250 mg per day and worked up to my full dose slowly, which for me was a gram per day. After a year and a half, I'm maintaining on 250 mg a day. If I have any sort of flareup, I increase my dose. It was pretty unbearable at the start, and every increase felt like hell. For me it got better and I have improved alot. Not a fun journey, but it ended up being worth it.

Seems like I did 250 mg at first, then occasionally bounced up to 500 mg per day, then could stay at 500 mg per day, then bounced to 750 sometimes (3 doses x 250 mg per day), then could stay at 750, then combined so my dose was 500 AM and 250 PM, then eventually bounced up to a gram. And it was miserable every time, then it would get less miserable.

Seems like a lot of us ME-patients are very sensitive to medicines in general. Are you seeing an ME-specialist? I need to ramp up slowly too.

 

[Viktor11]

I did not have any side effects from Famvir, but I was prescribed Valacyclovir and Acyclovir first and had horrible side effects from those, so that's why I am on Famvir. I have been taking it for 18 months to 2 years ish? I don't know exactly how long, I lost track . I take it for CEBV

Improvements? Well, I still get outbreaks of cold sores and frequent low grade fevers (which my doctor is perplexed by)

But, the cold sores are not as often or as big as before. The fever part has stayed pretty much the same.

She did say that based on Dr. Montoya's research, it may take some patients up to 5 years to notice improvements, but MOST people notice improvements after about a year

In my case, I have had reactivation(s) of EBV since I had a bad case of mono in 1995 (followed by the the start of my ME/CFS)

I have VERY high viral titers, including at times, my early antigen (which, in my understanding is only supposed to be elevated the first time you get mono)

So for me anyway, that could be why it is taking so long to have any noticeable improvements. I am also mostly bed/homebound, so that could be another factor

Hi,
You write you have very high titers, is that EBV? How high?
Anna

 

[BadBadBear]

Seems like a lot of us ME-patients are very sensitive to medicines in general. Are you seeing an ME-specialist? I need to ramp up slowly too.

I do not see a specialist, I see an Integrative MD. We are basically following Pridgen Protocol with Famvir and Celebrex.

I felt worried at the time I started because it took me sooo long to hit the full dose but after you have been at it for a year or so, it matters less and less how slow your start was. I don't think I could have gotten through a faster start.

 

[i-lava-u]

You write you have very high titers, is that EBV? How high?

I think I started antivirals shortly after this test (valacyclovir then acyclovir), I just copied and pasted it from my medical record,hopefully it makes sense! there was not a reference range attached on this one:

Lab/X-ray Results
EBV panel with titers05/02/2016
Dx: (B27.09) Gammaherpesviral mononucleosis with other complications
Files:

Performed:


WBC count with manual differential05/02/2016
Dx: (B27.09) Gammaherpesviral mononucleosis with other complications
Files:

Performed:


Notes on results:
Date 'performed' = date drawn.
"Peripheral smear within normal limits."

EBV VCA IgM < 36.0
Early Antigen IgG 64.3
VCA IgG 157
Nuclear antigen IgG < 18.0

---------------------------------------------------------

Here is my most recent test. They did not test early antigen on this one. I started taking famvir after this test.

EBV NUCLEAR IgG SCREEN

11/01/2017​

Files:

Performed
EBV Nuclear IgG Interpretation
Positive (ref: NEG) Final results Abnormal

Comments:​

See Note: Final results
(NOTE)
INTERPRETIVE TEXT FOR EBV STUDIES:

- -

EBV Interpretation
NEG: <=0.8 AI
POS: >=1.1 AI
EQ: 0.9-1.0 AI

- -

For specimens that are equivocal or negative with high
clinical suspicion, the patient can be re-collected for
repeat testing in one to three weeks.

The magnitude of the result measured above the cut-off is
not indicative of the total amount of antibodies detected.
Performed using BioPlex 2200 multiplex bead technology.

- -

See EBV Interpretative Guide in Laboratory Test Directory:


Performed at Intermountain Central Laboratory, Murray, Utah
EBV Nuclear IgG EBV
>8.0 AI (ref: <0.9) Final results High
EBV Nuclear IgG


------------------------------------------

EBV ANTI-VCA IgG

11/01/2017​

Files:

Performed:EBV Anti VCA IgG Interpretation
Positive (ref: NEG) Final results Abnormal
Performed at Intermountain Central Laboratory, Murray, Utah

EBV Anti VCA IgG
>8.0 AI (ref: <0.9) Final results High
EBV Anti VCA IgG

Notes on results:

--------------------------------------
Lab/X-ray Results
EBV ANTI-VCA IgM

11/01/2017​

Files:

Performed:
EBV Anti VCA IgM Interpretation
Negative (ref: NEG) Final results
Performed at Intermountain Central Laboratory, Murray, Utah

EBV Anti VCA IgM
<0.2 AI (ref: <0.9) Final results
EBV Anti VCA IgM