Was just prescribed both Tenofovir alafenamide and Tenofovir disoproxil

[Gzephyr]

I believe I have reactivated EBV and valacyclovir is the only drug that's helped with that. I'm sick as as dog when I don't take it. Convinced my doc to let me try tenofovir. Doc gave me the option to try either first. Just don't know which. Has anyone had experience taking either of these drugs. Has anyone tried both?

https://www.pnas.org/doi/10.1073/pnas.2002392117

This study claims Tenofovir alafenamide (TAF) is more potent and is well absorbed into lymphatic tissue which sounds amazing on paper. Tenofovir disoproxil (TDF) still seems like a better option than the valacyclovir I take. I have that prescription sitting next to me but not sure if I'm gonna start it tonight

 

[BrightCandle]

I always start anything new on a morning. That way if things go really badly wrong its the middle of the day and I can do something about it. I don't like starting drugs on an evening since I have no idea how my body will respond and I would rather not find out it wrecks sleep or brings me out in hives or makes my heart race when its bed time and I am exhausted already.

Not that I feel good in mornings, I don't its the worst part of the day, but its when I have the most waking time ahead of me to resolve whatever it is that happens and assess the side effects.

 

[Judee]

These threads might give you more info: https://forums.phoenixrising.me/threads/tenofovir-alafenamide-anyone.87959/

https://forums.phoenixrising.me/thr...patient-sick-for-20-yrs-tenofovir-poll.54912/

And one with a warning: https://forums.phoenixrising.me/threads/tenofovir-and-lactic-acidosis.8542/

I'm not sure which is which but remember one of them is a bit safer/less kidney toxic. @godlovesatrier, @Hip, or @heapsreal might remember which.

 

[Hip]

This study claims Tenofovir alafenamide (TAF) is more potent and is well absorbed into lymphatic tissue which sounds amazing on paper.

TAF is more potent than TDF, but is taken at a lower dose, so the overall effect is the same. Though TAF may be marginally safer for the kidneys.

 

[Cipher]

Since both Tenofovir and Valacyclovir has potential nephrotoxic effects, it's often recommended to monitor kidney function while taking them. Combining them is in theory more risky, and seems to be discouraged:

https://www.drugs.com/drug-interact...alacyclovir-2158-0-2282-0.html?professional=1

 

[cfs since 1998]

I believe I have reactivated EBV and valacyclovir is the only drug that's helped with that. I'm sick as as dog when I don't take it. Convinced my doc to let me try tenofovir. Doc gave me the option to try either first. Just don't know which. Has anyone had experience taking either of these drugs. Has anyone tried both?

https://www.pnas.org/doi/10.1073/pnas.2002392117

This study claims Tenofovir alafenamide (TAF) is more potent and is well absorbed into lymphatic tissue which sounds amazing on paper. Tenofovir disoproxil (TDF) still seems like a better option than the valacyclovir I take. I have that prescription sitting next to me but not sure if I'm gonna start it tonight

I would go with TAF.

 

[Hip]

Since both Tenofovir and Valacyclovir has potential nephrotoxic effects, it's often recommended to monitor kidney function while taking them. Combining them is in theory more risky, and seems to be discouraged:

https://www.drugs.com/drug-interact...alacyclovir-2158-0-2282-0.html?professional=1

Yes, and tenofovir with Valcyte can lead to tenofovir-induced nephrotoxicity as well, according to this paper.

 

[godlovesatrier]

Yeah I'd take TAF but some people were saying it won't reach cells in the same way which I didn't fully understand. The generic form of TAF is quite heavy on the body full stop, because indian generics have god awful compounding. If you can get a european or american generic for TAF it'll likely be loads better. I think it's descovy.

But yeah TAF always interested me but the side effects of the indian generic were so strong on my intestine (inflammation and stomach upset) that I have ditched it twice.

 

[Gzephyr]

Thanks for the info everyone. I’ve been taking it for 4 days now with no problem so far. I do feel similar to how I feel when I first come off of my antiviral and start to get a viral flare but it hasn’t developed fully into that yet. I wonder if this is a positive thing?

It was the TDF I started. I’m still waiting on prior authorization from my doctor for TAF so my insurance will pay for it

I’ll provide updates as I continue

 

[Gzephyr]

Day 5: still feeling pretty good. Immune activity is a little higher but I don’t really classify that as PEM. Just feel like I have a very minor cold. 99% sure it’s the tenofovir, though.

I’m light and limber on my feet which is a good sign. I’m not achy and stiff like when I’m in a PEM flare. Making sure to rest as much as possible

 

[Gzephyr]

Day 7: mostly more of the same except more fatigue. It’s nothing too crazy but it’s very noticeable. Still don’t really have any PEM. I feel quite good except for the extra tiredness that’s crept up over the last few days.

I may cut my dose in half, though. I don’t wanna stress my immune system out any more than it already is. I’ll see how I feel in the morning.

Also, I participated in the first half of a Stanford CFS study today! The 2nd half is Thursday. They’re gonna inject me with a tracer through IV and then do a pet scan then MRI to check for systemic inflammation. Pretty neat

 

[Dude]

Also, I participated in the first half of a Stanford CFS study today! The 2nd half is Thursday. They’re gonna inject me with a tracer through IV and then do a pet scan then MRI to check for systemic inflammation. Pretty neat

Sounds interessting. Is there a link to the Study?

I also tried Tenofovir Disoproxil Fumarate / Emtricitabine for 2 Month. But it didnt help me.

 

[Gzephyr]

Sounds interessting. Is there a link to the Study?

I also tried Tenofovir Disoproxil Fumarate / Emtricitabine for 2 Month. But it didnt help me.

I couldn’t find it, sorry. Sadly, I wasn’t invited back for the 2nd day of the study. They said my medical history disqualified me and would not go into specifics

 

[Gzephyr]

It’s been over 2 weeks on Tenofovir. The viral flare up symptoms are gone. I started to feel much better overall a few days ago but have since crashed.

My sinuses, throat, and tonsils have been inflamed 24/7. I don’t have the chills and fatigue like I do during a viral flare up. This is my form of PEM.

This was how I was feeling before starting the Tenofovir so not sure if the Tenofovir is causing/contributing to it

 

[Gzephyr]

I tried coming off of valacyclovir yesterday but I got a viral flare up…. I skipped my morning dose and felt the flare by the time I was supposed to take my 2nd dose. So around 16 hours off of the VAL. Never fails…

So I guess the tenofovir isn’t working like I wanted as of yet. Maybe it’ll take several weeks to kick in 100%. Hoping to come off the Valacyclovir completely in the future. I can’t help but think it’s another virus other than EBV but I’ve tested negative for all of them except for EBV. Positive PCR test while off valacyclovir…. If Tenofovir doesn’t work eventually then I have no clue what to take other than Val to push replication to 0%. I have a hunch that the VAL doesn’t get me there. Maybe to around 95% or so. Low enough to not show up on a blood test while on VAL

 

[Gzephyr]

Update: feeling pretty ok lately. I was feeling pretty rough but I’m doing better now. For a week or so, I would feel ok during the day but would get terrible PEM that kicked in around 6 or 7pm. Almost every single day even without any exertion.

It kept happening into this week but was much much less severe. It seems to be improving by the day.

I seem to be fully adjusting to the tenofovir, finally. I’m still very excited about my future on this drug. Even if it doesn’t directly stop my viral replication, the immune modulation this drug provides should provide a benefit after a few months.

 

[Gzephyr]

Update: felt pretty good this past week. Have had a few days where I felt completely normal. No clue if it’s the TDF because I’ve been resting as much as possible to avoid PEM.

I did switch to Tenofovir Alafenamide today since insurance finally approved it. Had a $120 co-pay but found a manufacturer coupon and paid $0 !

I’m already feeling another viral flare up like I did when I started TDF. I still consider this a good thing. Maybe it’s similar to IRIS symptoms that HIV patients get when their immune system starts to recover. I believe it has something to do with low CD4 cells returning to normal. Could be a completely different thing in my case but I’d like to think this means I’m a responder to this medication.

Excited to see how TAF works for me. I know it’s much stronger against EBV and much safer in the body compared to TDF. Glad to be off of that stuff even though it seemed to be helping me

 

[Gzephyr]

TAF 1 week update: Still getting viral flare ups from this drug BUT I still feel pretty good other than that. I'd say the normal viral inflammation I have is cut by close to half. On average, my throat isn't as red, my PEM is less severe and doesn't last as long, and my brain fog seems slightly improved. I'm hoping this drug's effectiveness hasn't plateaued and I continue to feel better over time. I'd say this drug improves my physical QoL as much as NAC does. Too bad I can't take NAC for long because it makes me anhedonic.

I'm still taking valacyclovir 3 grams. I cannot go without it.

 

[Forummember9922]

TAF 1 week update: Still getting viral flare ups from this drug BUT I still feel pretty good other than that. I'd say the normal viral inflammation I have is cut by close to half. On average, my throat isn't as red, my PEM is less severe and doesn't last as long, and my brain fog seems slightly improved. I'm hoping this drug's effectiveness hasn't plateaued and I continue to feel better over time. I'd say this drug improves my physical QoL as much as NAC does. Too bad I can't take NAC for long because it makes me anhedonic.

I'm still taking valacyclovir 3 grams. I cannot go without it.

@Gzephyr How are you doing with your QoL and PEM? Hopefully keeping an eye on kidney/liver if you are TAF+3g Valtrex

 

[Shanti1]

TAF 1 week update: Still getting viral flare ups from this drug BUT I still feel pretty good other than that. I'd say the normal viral inflammation I have is cut by close to half. On average, my throat isn't as red, my PEM is less severe and doesn't last as long, and my brain fog seems slightly improved. I'm hoping this drug's effectiveness hasn't plateaued and I continue to feel better over time. I'd say this drug improves my physical QoL as much as NAC does. Too bad I can't take NAC for long because it makes me anhedonic.

I'm still taking valacyclovir 3 grams. I cannot go without it.

Hi @Gzephyr thanks for all of your posts sharing your progress. I also have to stay on valtrex or symptoms come back, although take about 3 days for me instead of the same day.

I tried TAF a while back, but I couldn't tolerate it, even at a greatly reduced dose. I think (although I can't be 100% sure), that the issue for me was medication side effects and not the immune flair one can get when starting an antiviral. When I started valtrex I had a noticeable flair, followed by resolution of some symptoms. This felt different. Anyhow, do let us know how you are getting along with it.