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.