Was just prescribed both Tenofovir alafenamide and Tenofovir disoproxil

[Gzephyr]

It's a paradox but beginning antiviral treatment does seem to cause a viral flare in many, if not most ME/CFS patients. I haven't been able to find a satisfying scientific explanation, mainly because no one has bothered to investigate it. It's often called a "Herxheimer reaction", but that is meant to refer to bacteria die-off. The closest analogy is HIV-related IRIS but that doesn't quite seem like the same thing either.

As more people with autoimmune diseases (like MS) try antivirals, it will be interesting to see if they also experience flare-ups when they first start them.

I had the biggest flare I've ever had when I started Valacyclovir 6 months ago. I only took it for a week but I never recovered from that flare, unfortunately. I wonder if I would have been better off if I kept taking it. I'm trying it again, starting in very small doses and working up.


I speculate that's because you're basically upsetting the homeostatic balance whenever you stop a drug you've been taking awhile, or start a new one that you've never taken (or haven't taken for awhile). The brief period off Val takes your body out of homeostatis, and going back on it quickly brings it back. But, it takes a long time to shift to a new homeostatis level.

Thanks for keeping us updated, Gzephyr.

Thanks for the info

Would you say it’s more likely my homeostatic balance being thrown off or simply the virus starting to replicate again because VAL is not there suppressing it? I started VAL while I had acute mono and it knocked it out within a day or two. I tried to come off of it before even a week had passed and the same flare happens. I felt exactly like I did with mono.

I’ve also experimented over the years with different dose timings and would flare up in specific situations.

Cutting a 1 gram pill in half and taking 500mg and then another 500mg 45 minutes later caused me to have horrible symptoms. It wasn’t the same flare as I’ve mentioned but arguably worse. My whole body felt on fire during the duration of the experiment. That’s the best way to describe it. I switched back to my normal dosing and felt better within 24 hours.

Recently, I tried taking a gram and a half in the morning as my first dose, skipping my mid-day dose, and then another gram and a half at night 12 hours later. I experienced the “no VAL” viral flare I get the very next day so I stopped the experiment. The feeling I get is indistinguishable from regular PEM

I’ve speculated that it could be some sort of immune rebound after stopping VAL and not an EBV flare but I don’t have enough evidence to stop taking the medication. I’d stop it and push through the flare but I get so much worse long term whenever I allow that to happen… A long time ago, I went a week and a half without it and I felt worse and worse every day to the point where I could hardly even walk and stand up in the shower. Along with the worsening of other physical symptoms I’ve mentioned before. The mouth ulcers kept coming and the sinus and throat inflammation got worse and worse. I haven’t recovered from this flare since

Not necessarily asking for answers from you guys, just detailing my long experience with this drug. Thanks for all the info

 

[cfs since 1998]

Thanks for the info

Would you say it’s more likely my homeostatic balance being thrown off or simply the virus starting to replicate again because VAL is not there suppressing it? I started VAL while I had acute mono and it knocked it out within a day or two. I tried to come off of it before even a week had passed and the same flare happens. I felt exactly like I did with mono.

I’ve also experimented over the years with different dose timings and would flare up in specific situations.

Cutting a 1 gram pill in half and taking 500mg and then another 500mg 45 minutes later caused me to have horrible symptoms. It wasn’t the same flare as I’ve mentioned but arguably worse. My whole body felt on fire during the duration of the experiment. That’s the best way to describe it. I switched back to my normal dosing and felt better within 24 hours.

Recently, I tried taking a gram and a half in the morning as my first dose, skipping my mid-day dose, and then another gram and a half at night 12 hours later. I experienced the “no VAL” viral flare I get the very next day so I stopped the experiment. The feeling I get is indistinguishable from regular PEM

I’ve speculated that it could be some sort of immune rebound after stopping VAL and not an EBV flare but I don’t have enough evidence to stop taking the medication. I’d stop it and push through the flare but I get so much worse long term whenever I allow that to happen… A long time ago, I went a week and a half without it and I felt worse and worse every day to the point where I could hardly even walk and stand up in the shower. Along with the worsening of other physical symptoms I’ve mentioned before. The mouth ulcers kept coming and the sinus and throat inflammation got worse and worse. I haven’t recovered from this flare since

Not necessarily asking for answers from you guys, just detailing my long experience with this drug. Thanks for all the info

Hi Gzephyr,

What are you trying to do exactly? If you are doing well (or not getting worse) on a particular Val dose, I would just stay on that. I wouldn't play around with the dosage.

I'm currently up to about 750mg/day myself and plan to take it forever if I can, probably 1 to 2g/day.

 

[Gzephyr]

Hi Gzephyr,

What are you trying to do exactly? If you are doing well (or not getting worse) on a particular Val dose, I would just stay on that. I wouldn't play around with the dosage.

I'm currently up to about 750mg/day myself and plan to take it forever if I can, probably 1 to 2g/day.

I wasn’t doing well on 3 grams a day. The last half or year or so has been very tough on me. I don’t really do “well” at all on the medication, I just have to take it or risk becoming bed bound.

I want to knock down EBV even more so that’s why I’ve moved to 4 grams a day. It makes sense in my head. My doctor seemed to agree that it’s worth a try.

You’ll probably be fine on that dose forever. I’ve had 0 liver or kidney problems 3+ years into medicating. It seems to be a very well tolerated medicine from people I’ve talked to even though there’s apparently a kidney health risk. Just drink tons of water !

 

[Gzephyr]

I’ve been on 4 grams VAL a day now for close to two weeks. So far so good but don’t wanna jinx it so I’m not gonna talk too much about the good days I’ve had recently.

I’ve very recently started to feel the flu like flare ups I’ve mentioned before. Started to feel it last night. Again, it’s like I feel when I’m off of the medication and when I started/restarted TAF. This has never happened while consistently taking valacyclovir so I think it’s a response to the dose increase. Very strange that it’s occurring 2 weeks after I increased my dose and not at the beginning.

My tinnitus has also noticeably improved. This may be a coincidence

 

[HannahAdina]

I’ve been on 4 grams VAL a day now for close to two weeks. So far so good but don’t wanna jinx it so I’m not gonna talk too much about the good days I’ve had recently.

I’ve very recently started to feel the flu like flare ups I’ve mentioned before. Started to feel it last night. Again, it’s like I feel when I’m off of the medication and when I started/restarted TAF. This has never happened while consistently taking valacyclovir so I think it’s a response to the dose increase. Very strange that it’s occurring 2 weeks after I increased my dose and not at the beginning.

My tinnitus has also noticeably improved. This may be a coincidence

Hey,
I am taking descovy which contains 25 mg tenofovir alafenamide for 4 weeks now. Initially after th first 4 days I had a huge flaire up, it was terrible, a very strong flu like virus feeling headache even worse and couldnt even focus my eyes bevause of the fatigue... if you know what I mean.
I really hope improvements are ahead of me with tenofovir. So far I don't feel better.
Are you still taking tenofovir? is it helping you?


can you tell me how big the improvement was you got with valaciclovir? for how long are you already taking it?
and what was your health like before and after taking the course of valtrex?


I am thinking of switching to valtrex maybe..
I thought tenofovir is much stronger for ebv than valtrex and I would feel better sooner.

 

[Gzephyr]

Hey,
I am taking descovy which contains 25 mg tenofovir alafenamide for 4 weeks now. Initially after th first 4 days I had a huge flaire up, it was terrible, a very strong flu like virus feeling headache even worse and couldnt even focus my eyes bevause of the fatigue... if you know what I mean.
I really hope improvements are ahead of me with tenofovir. So far I don't feel better.
Are you still taking tenofovir? is it helping you?


can you tell me how big the improvement was you got with valaciclovir? for how long are you already taking it?
and what was your health like before and after taking the course of valtrex?


I am thinking of switching to valtrex maybe..
I thought tenofovir is much stronger for ebv than valtrex and I would feel better sooner.

I’m not currently taking TAF. I might restart it in a month or two after I get a true feel of how an extra gram of Valacyclovir is helping me. I had pretty much the exact same viral feeling flare as you when starting TAF. It’s like that feeling you get when a cold is coming on !

I can’t say Tenofovir helped. I don’t think it suppresses EBV enough for me.

I get that same exact viral feeling when off of valacyclovir that gets worse and worse if I continue to not take it. I also get 30 mouth ulcers in like a week + more miscellaneous symptoms. I test positive for EBV DNA while off of valacyclovir so this explains everything.

I’ve been on VAL ever since my EBV reactivated in late 2020 and caused acute mono. I started the drug during the mono phase, which cleared it up, but the virus has simply yet to go fully dormant post acute mono. I can’t say I’ve improved while on VAL, it just keeps me from getting worse. The several times I’ve tried to come off the drug, I’ve worsened my CFS long term. I’ve been taking 3 grams a day for close to 4 years. Just recently moved to 4 grams a day and I’ve had some early success but it hasn’t been long enough to say for sure

Stay on tenofovir for at least a few months. If you don’t feel better it might be a good idea to try Valtrex. Everyone responds differently to things !

 

[cfs since 1998]

Hey,
I am taking descovy which contains 25 mg tenofovir alafenamide for 4 weeks now. Initially after th first 4 days I had a huge flaire up, it was terrible, a very strong flu like virus feeling headache even worse and couldnt even focus my eyes bevause of the fatigue... if you know what I mean.
I really hope improvements are ahead of me with tenofovir. So far I don't feel better.
Are you still taking tenofovir? is it helping you?


can you tell me how big the improvement was you got with valaciclovir? for how long are you already taking it?
and what was your health like before and after taking the course of valtrex?


I am thinking of switching to valtrex maybe..
I thought tenofovir is much stronger for ebv than valtrex and I would feel better sooner.

TAF should be stronger hypothetically, however, since most of the EBV is latent, it will still take a long time to reduce viral load.

The following graph from Dr. Lerner's Valtrex/Valcyte treatment paper (published in 2010) seems to indicate it takes a year before a substantial symptom improvement.

I experienced the worst flare up I've ever had after starting Valtrex so I don't think switching is going to help you.

If anything I wish these two could be taken together however that can be bad for kidneys.

The flare-up could be a immune reconstitution inflammatory process. This might mean that the stronger the drug, the worse the flare-up. Seems like most CFS patients who have tried TAF have had trouble tolerating it, possibly due for this reason.

 

[HannahAdina]

TAF should be stronger hypothetically, however, since most of the EBV is latent, it will still take a long time to reduce viral load.

The following graph from Dr. Lerner's Valtrex/Valcyte treatment paper (published in 2010) seems to indicate it takes a year before a substantial symptom improvement.

View attachment 53910

I experienced the worst flare up I've ever had after starting Valtrex so I don't think switching is going to help you.

If anything I wish these two could be taken together however that can be bad for kidneys.

The flare-up could be a immune reconstitution inflammatory process. This might mean that the stronger the drug, the worse the flare-up. Seems like most CFS patients who have tried TAF have had trouble tolerating it, possibly due for this reason.

Thanks. Very interesting. So for how long are you already taking valaciclovir? Can you already feel improvement?

So its not bad if someone feels worse after taking tenofofir?

I once took valtrex and I didnt have such a flare up like with tenofovir.
I know a person who is healed from ME CFS . She fook tenofovir disoproxil for three years. and also valaciclovir in additon for some time. I guess it is possible to take both but it would scare me to do that without a doctor. And kidney and liver values hae to be checked

I had to quit tenofovir because I was admitted to a clinic where a doctor treats me with aciclovir IV high dose for several weeks. I hope it helps because I have already varicella zoster activated. I hope at least that will go down with aciclovir and hopefully ebv too.

 

[cfs since 1998]

Thanks. Very interesting. So for how long are you already taking valaciclovir? Can you already feel improvement?

I only took it for a week. Got scared at the severity of reaction and stopped taking it.

After 6 months I did not recover from my flare I decided to start taking it again. I thought if I started with a tiny dose and worked my way up, I could avoid side-effects. Unfortunately I seem to be flaring again.

So its not bad if someone feels worse after taking tenofofir?

I don't know. It is widely reported (for antivirals in general, not specific to tenofovir) that most patients feel worse before they feel better. Some only feel worse and never get to the better stage. Some have no effect, positive or negative. Unfortunately, no one knows why this happens. Some doctors have reported that the patients who flare the most at the beginning of treatment also see the most improvement, but I am skeptical of this, due bias, placebo effect, etc.

I once took valtrex and I didnt have such a flare up like with tenofovir.
I know a person who is healed from ME CFS . She fook tenofovir disoproxil for three years. and also valaciclovir in additon for some time. I guess it is possible to take both but it would scare me to do that without a doctor. And kidney and liver values hae to be checked

I had to quit tenofovir because I was admitted to a clinic where a doctor treats me with aciclovir IV high dose for several weeks. I hope it helps because I have already varicella zoster activated. I hope at least that will go down with aciclovir and hopefully ebv too.

Thanks for that information. I hope you keep us posted with regard to your experience.

 

[beingsamiracle]

Just saying hello to you guys who've been active on this thread...I've had EBV induced CFS for the past years, currently severe. I'm gonna try antivirals in the near future - still undecided whether I'll go with valtrex or Tenofovir.

I have a pretty regular EBV like flare up every month or so that is not related to stress, it just happens and lasts a few days to a week. What's worse, the minute I move around or have a stressful situation with my kids, say, I can feel the beginning of a reactivation. If I'm careful and immediately lay down, I "recover" within a few minutes to a few hours and I'm good again. But it has happened a number of times over the last half a year or so that a stressful event/physical exertion has triggered a reactivation that then makes me feel like I have mono all over again.

I wonder whether any one of you can relate to even a little bit of what I'm experiencing? Truth to be told, I don't otherwise have the full array of typical ME/CFS symptoms (brain fog, constant fatigue, terrible sleep). I actually feel pretty normal most of the time and can read/watch stuff and have conversations with friends and family so long as it's in a quiet and peaceful environment. Again, the minute my body/mind gets strained, I'm at risk of a mono-like flare-up.

I haven't for that reason been able to leave the house or even move around the house for that matter in the past year.

 

[godlovesatrier]

I'm the same as you although I wouldn't say I feel better in a few hours probably a full day or two. But if you're not taking valtrex you should be.

I'm going to try truvada but on this forum lots of people have tried it for ebv and some have had very poor results.

 

[beingsamiracle]

I'm the same as you although I wouldn't say I feel better in a few hours probably a full day or two. But if you're not taking valtrex you should be.

Yeah, valtrex seems like an obvious choice doesn't it? I live in Germany and my docs are unfamiliar/skeptical regarding antivirals. You're from the UK, right? Did you get Valtrex prescribed? Is it covered by health insurance? I can't really afford 3g/day or 5 Euros/day for the years without end. And I would need to find a reliable source...

 

[godlovesatrier]

Yes I get it prescribed.

 

[Sancar]

@godlovesatrier ~ Hello ~ How did you react to Truvada? Ive gphad EBV since 1988. Only thing prescribed Valtrex ? Than you for your input

 

[godlovesatrier]

Haven't taken it yet but due to take it in April.