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can't tolerate Valtrex after several tries -- what do I do?

el_squared

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Hi,
This is about Valtrex, dosing, and how I can't seem to tolerate it.
So I'm a patient at the CFS clinic at Stanford. Dr. Bonilla is set on my taking Valtrex. (I have the generic 500mg tablets, made by Aurobindo.) The prescription was initially 500mg tablet twice a day.
But, Off and on for several months, I have tried to take it, but unsuccessfully. A few days I have tolerated a quarter tablet. But often even a quarter tablet makes me so ill I can't walk. Dr. Bonilla said I can take a smaller dose, but eventually I'm supposed to move up, and I can't. After being off it for a while, I'm back to trying like 1/16 of a tablet.

Hard to know if it's doing anything! I feel like I'm making zero progress. My health is terrible. What should I do?

thanks,
Laura
 

geraldt52

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If you are taking generic Valtrex you could try the name brand. Sometimes it makes a difference. You could also try acyclovir, a similar antiviral, which I found easier to tolerate than Valtrex.
 

el_squared

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If you are taking generic Valtrex you could try the name brand. Sometimes it makes a difference. You could also try acyclovir, a similar antiviral, which I found easier to tolerate than Valtrex.
I'm just hearing about this one -- Acyclovir. That's not Famvir, right? That's Zovirax? Is it helping you?
 
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You might find this interesting

Viruses and CFS: Statements by Ron Davis and Bob Naviaux (September 2016)

The most important thing you can do is listen to your body and not let these doctors over-rule you. Be careful. FYI other clinics will run monthly safety labs - not sure this clinic does that.

I see you were also on this thread

Have you considered the suggestion on that thread of going to the Center for Complex Diseases just down the road for a second opinion? The last thing you want to do is make yourself permanently worse. It is expensive but better safe than sorry.

Oh, and if they suggest an immune modulator be careful and read up first. I was shocked after I read @cb2 comment here
 

el_squared

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Thanks for your reply. I was surprised that Bonilla didn't offer to do monthly labs. But I recently talked to my internist who I see regularly and she seems okay with ordering liver function tests, etc.

The Center for Complex Diseases sounds promising but Stanford is covered by my very affordable insurance, and the other offers no coverage. Considering that I'm totally broke, no savings, mountains of debt, I can't go there.

I did test recently as having zero NK cell function, and Dr. Bonilla recommended Imunovir, but gave me no tips on how to get it. He did say Inosine, a supplement that is chemically similar, would suffice. I haven't tried it yet.
 

el_squared

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Thanks for your reply. I was surprised that Bonilla didn't offer to do monthly labs. But I recently talked to my internist who I see regularly and she seems okay with ordering liver function tests, etc.

The Center for Complex Diseases sounds promising but Stanford is covered by my very affordable insurance, and the other offers no coverage. Considering that I'm totally broke, no savings, mountains of debt, I can't go there.

I did test recently as having zero NK cell function, and Dr. Bonilla recommended Imunovir, but gave me no tips on how to get it. He did say Inosine, a supplement that is chemically similar, would suffice. I haven't tried it yet.
And thanks for the links -- very interesting. My viral tests only showed past infection. Stanford has maintained that these elevated numbers are still significant, but I really wonder. It seems like the ground is constantly shifting. It's viral-related. It's mitochondria. It's inflammation. It's immune function. it's all of it. Meanwhile, I'm in bed.
 

geraldt52

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I'm just hearing about this one -- Acyclovir. That's not Famvir, right? That's Zovirax? Is it helping you?
Acyclovir is Zovirax, not Famvir. I think that the only difference between Zovirax and Valtrex is that Valtrex requires lower doses because it is more bioavailable or something. I used Zovirax for a bit more than a year, but all the benefit I got from it occurred in the first 3 months, and then really no further benefit. I tried replacing it with Valtrex, but it also did nothing. I had much worse side effects from the Valtrex (mostly joint and muscle pain). After stopping both of them I noticed no difference whatsoever.
 
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Valtrex is Valacyclovyr, is cheaper, however has more side effects.
Zovirax is Acyclovyr, is more expensive, has less side effects.

I believe both of them are used for different situations. Etc. the most common use of Acyclovyr is the need to fight the Herpes simplex virus (etc cold sores, encephalitis), Valacyclovyr on the other hand is more frequently used to fight the Herpes Zolster virus that causes Shingles.

They both work by inhibiting the replication of viruses.

However, Laura, afaik these medications are used for active infections, don't use them longer than a couple of weeks withouth the advise of your doctor. Also, they're more helpful for active virus infections. My dad had severe accidents and is a chemist, he has chronic virus flare ups and no one can explain what is going on (etc his head and eyes start hurting when he has more stress).

Viruses are sneaky little parasites that are hard to fight with. You should also relax a little bit and think about adjusting your diet and supplement it with neccesary vitamins.

Viruses are best taken care of naturally by our immune systems. We don't have such effective medicines equivalent to Antibiotics for bacteria for them.
 

Wonkmonk

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What exactly are your symptoms when you say you can't tolerate it?

I had some problems with my kidneys while on Valtrex. Also couldn't tolerate 500mg at that time, I had discomfort/pain in the kidney area, back pain, and a general worsening of most other symptoms.

It got better when I stopped Vitamin D supplements and switched to a diet that is moderate in Calcium and Potassium (I had very high intake of both before that). Calcium and potassium are excreted by the kidneys, so that might have played a role. Afterwards I could restart Valtrex again.

Which virus is your doctor targeting with the Valtrex?

There are other drugs available, e.g. Famciclovir (Famvir) is metabolized mostly in the liver, not in the kidney, so if the kidney is the problem (as it was in my case), you may tolerate Famciclovir better. Brivudine might also be an option (metabolized entirely in the liver), although effectiveness against EBV is not proven, but it is very effective against Herpesvirus 1 and 3. Foscarnet would be another drug that might be effective, depending on which virus you are targeting.
 

Hip

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Valtrex is Valacyclovyr, is cheaper, however has more side effects.
Zovirax is Acyclovyr, is more expensive, has less side effects.
Valacyclovir converts into acyclovir in the body, so I would think it is likely you will get similar side effects with both drugs. Famvir is a different drug, with similar efficacy to Valtrex, but much better tolerated.



However, Laura, afaik these medications are used for active infections, don't use them longer than a couple of weeks withouth the advise of your doctor.
If you look up the Dr Lerner and Prof Montoya antiviral protocols for ME/CFS, you will see that Valtrex, Famvir and Valcyte are prescribed for years if not indefinitely. Benefits appear only slowly.

This is because the herpesvirus infections found in ME/CFS may not be regular viral infections. Dr Lerner for example proposed herpesviruses form abortive infections in ME/CFS patients, which is why they are so hard to treat with antivirals (normally antivirals work within a matter of weeks for regular viral infections, but they take much longer to work in ME/CFS).
 
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el_squared

Senior Member
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Valtrex is Valacyclovyr, is cheaper, however has more side effects.
Zovirax is Acyclovyr, is more expensive, has less side effects.

I believe both of them are used for different situations. Etc. the most common use of Acyclovyr is the need to fight the Herpes simplex virus (etc cold sores, encephalitis), Valacyclovyr on the other hand is more frequently used to fight the Herpes Zolster virus that causes Shingles.

They both work by inhibiting the replication of viruses.

However, Laura, afaik these medications are used for active infections, don't use them longer than a couple of weeks withouth the advise of your doctor. Also, they're more helpful for active virus infections. My dad had severe accidents and is a chemist, he has chronic virus flare ups and no one can explain what is going on (etc his head and eyes start hurting when he has more stress).

Viruses are sneaky little parasites that are hard to fight with. You should also relax a little bit and think about adjusting your diet and supplement it with neccesary vitamins.
I HAVE BEEN GLUTEN FREE FOR 13 YEARS, SINCE BEING DIAGNOSED WITH CELIAC DISEASE. I AM DAIRY FREE. SUGAR FREE. AVOID GRAINS MOST OF THE TIME. WHAT DO YOU RECOMMEND? I HAVE TENS OF THOUSANDS OF DOLLARS IN SUPPLEMENTS. NOTHING HAS PROVEN HELPFUL THAT I CAN SEE.

Viruses are best taken care of naturally by our immune systems. We don't have such effective medicines equivalent to Antibiotics for bacteria for them.
 

Tella

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What exactly are your symptoms when you say you can't tolerate it?

I had some problems with my kidneys while on Valtrex. Also couldn't tolerate 500mg at that time, I had discomfort/pain in the kidney area, back pain, and a general worsening of most other symptoms.

It got better when I stopped Vitamin D supplements and switched to a diet that is moderate in Calcium and Potassium (I had very high intake of both before that). Calcium and potassium are excreted by the kidneys, so that might have played a role. Afterwards I could restart Valtrex again.

Which virus is your doctor targeting with the Valtrex?

There are other drugs available, e.g. Famciclovir (Famvir) is metabolized mostly in the liver, not in the kidney, so if the kidney is the problem (as it was in my case), you may tolerate Famciclovir better. Brivudine might also be an option (metabolized entirely in the liver), although effectiveness against EBV is not proven, but it is very effective against Herpesvirus 1 and 3. Foscarnet would be another drug that might be effective, depending on which virus you are targeting.
Hey how r u now?
 

EddieB

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Found this thread, hoping to continue discussion...

I made a second attempt with valtrex, same results, burns my stomach and esophagus. I cannot take it. Has anyone experienced this, other options? Acyclovir is likely the same drug, I would think?
 

Hip

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Acyclovir is likely the same drug, I would think?
Yes, Valtrex is the prodrug for acyclovir, meaning it converts into acyclovir in the body.


An alternative to Valtrex is Famvir, which is a different drug, but targets the same viruses as Valtrex. Famvir is usually better tolerated. Unfortunately Famvir is about 3 times the cost of Valtrex.