Tenofovir Alafenamide anyone?

[heapsreal]

I can recall where I read it and which guru said it but basically our bbb is cactus anyway, so our antivirals, going by this logic should work but........

 

[godlovesatrier]

Safety profile well TAF is very safe in terms of kidney toxicity and I think nephrotoxicity due to be way in which it's metabolised into the cells.

Tenofovir however isn't as safe as it's much harder on the kidneys and liver.

That's all I've got I'm afraid.

Like heaps said it's trial by error you just can't know if you're going to be a responder. To be honest I want to take taf so it will hit ebv without the kidney complications that I get from valtrex. Taf will stay in the cells much longer and only require one dose and supposedly can be titrated. So all in all it seems a better drug than the valtrex. I guess valtrex is my fallback drug at this point.
In an ideal world I'd take famvir and taf together but famvir makes me angry and gives me insomnia. Although maybe it's worth doing a 14 day test. As I usually crash on antivirals after a week or two. I'm not sure why. I don't know if it's antioxidant depletion in cells or what...

 

[MartinK]

do I understand correctly? - better safe profile than Valtrex? ...and lower load for kidneys and liver? wow!

I found this (in association with EBV):
"In a cell-based assay, TAF was 35- and 24-fold and TDF was 10- and 7-fold more potent than acyclovir and penciclovir, respectively, and TAF was also twice as potent as ganciclovir."

from: https://pubmed.ncbi.nlm.nih.gov/32409608/

 

[godlovesatrier]

No better safety profile than tenofovir. But yes TAF better for kidneys and liver than tenofovir not valtrex.

I haven't compared valtrex and TAF. To be honest absolutely nobody has the reaction I do to valtrex so I'd take it with a pinch of salt.

Correct highly potent against ebv.

Just took my first dose. My pill splitter is garbage it never splits the pills right. I noted it has 3 dyes in it hope I don't have one of my loopy reactions to one of the dyes. Apart from that I've taken about 8mg eyeballed due to the dodgy splitter. Was meant to be 12.5. Gonna see how I react first before I go higher.

Sore throats very bad today. I assume it's ebv so be interesting to see if the taf squashes the sore throat.

Only just taken the taf so nothing to report yet. Assume peak plasma concentration in an hour will have to Google it.

 

[godlovesatrier]

More info about TAF

https://www.drmyhill.co.uk/drmyhill/images/6/64/Arztanfragen_englisch_KV-Doctor-Inquiries-ART-regime-for-ME-final_(1).pdf

Alternative to Viread:
A good alternative to Viread is the proprietary drug Vemlidy (TAF = Tenofovir alafenamid), which has a much better side effect profile, although it is supposed to be equally as potent as Viread.

Vemlidy can be taken at its full dose straightaway. It is possible to start out with a smaller dose, too, but it is better to reach full dosage soon to prevent the development of resistance. This is because it contains far less Tenofovir than Viread.
Because of its better tolerability, especially with regard to kidney function and bone density, Vemlidy is probably also better suited for older patients. The only catch on Vemlidy - besides the fact that, unlike Viread, it is not yet available as a generic drug - is that it is still relatively new on the market, studies on which integrase inhibitors it can be combined with are still missing and only very few ME patients have had experience with it so far. The interaction between Vemlidy and, for example, the integrase inhibitor Raltegravir, which, as mentioned at the beginning, has to be added at some point, has not yet been investigated, but none is expected

It also says that responders are more likely to be ICC definition myalgic encephalomyelitis patients. That is patients who suffer from neuro cognitive dysfunction with even the smallest amounts of exertion. Which I still think explains me even as a milder patient. I hope anyway without a SPECT scan theres little way to know.
So that might indicative responders.

 

[godlovesatrier]

So titration isn't advised with TAF after all. Titration was advised instead for tenofovir. With full dose potentially being reached after 7 months (this case study).

 

[godlovesatrier]

So it's 55 minutes since I dosed now. Peak plasma concentration at 60 minutes according to Google.

I experienced sleepiness, much worsened brainfog, neuro cognitive slowdown, sound sensitivity exacerbation, fatigue in legs and arms Inc joint and muscle pain, hot earlobes.

I took 8mg as a tester dose. I'm going to take the rest now so I'm on 25mg for the day.

All the above symptoms stopped about 45 minutes in apart from fatigue in the body, brainfog, and muscular pain (to be honest this pain is from the fatigue I think which may not be the same as pain in the muscles not sure).

I'll report back in a bit when I've taken the rest.

My sore throat has gone. I'll see if it stays that way.

 

[godlovesatrier]

5pm now starting to experience some worse flu like symptoms. Although that's probably because I had to get up and do some lifting which has made me feel more achy. Not experiencing fatigue now to be honest just aches and muscular pains.

I've just remembered I had a theory years ago that if this happened it was probably a good sign. As it meant the immune system was working through the problem. As I don't tend to experience flu like symptoms anymore like I used to. I generally just feel weak, exhausted and/or lethargic.

Anyway my lymph nodes in my neck feel quite full. I've got no fatigue now just the flu like muscular and joint pains. Brainfog is a lot better but not great. So I assume it's still working as it's meant to.

I also felt really hungry an hour ago - assume immune activation. And assuming the flu like pain isn't from a really bad crash then I don't feel like I'm crashing from that initial dose. I didn't take a higher dose today. Just stuck with 8mg. I'll try to eyeball 12 tomorrow! As myhill contradicts the other doctor saying that it's ok to titrate TAF and that 12.5mg is probably plenty for ME patients. But she seems to base her ideas on less than concrete reasons. Anyway I'm going to stick with 12.5mg hopefully brain fog will be gone by the morning.

If my body adapts to 12 and I've seen results I might go to a higher dose in future months.

 

[godlovesatrier]

Forgot to say over the 2 to 3 months that I took famvir and valtrex whilst I did experience much worsened brainfog (mainly on famvir but only slightly on valtrex) I didn't experience any flu like symptoms. But I did get tonsillitis on Famvir at day 8 and two days later it was gone. Since then the tonsillitis has only come back once (a few weeks ago) it responded to valtrex but an inflammatory state had my body stuck in a loop so valtrex wasn't enough on its own.

So I'm not sure what the tenofovir is hitting the the valtrex and famvir didn't to experience these symptoms. But I'm intrigued to see how I go.

Flu like symptoms: really bad aches and pains, some mild nausea, brain fogged up (slow reaction times strained neuro cognitive processing). I've also got a cough but that might be a coincidence. Heart rate slightly tachy (was worse earlier). Head is starting to hurt a bit too - could just be hunger.

 

[Shanti1]

Just took my first dose. My pill splitter is garbage it never splits the pills right. I noted it has 3 dyes in it hope I don't have one of my loopy reactions to one of the dyes. Apart from that I've taken about 8mg eyeballed due to the dodgy splitter. Was meant to be 12.5. Gonna see how I react first before I go higher.

Thanks for reporting back on your experience. I found I was having trouble with even a quarter tab, so I ended up dissolving tabs in a bottle such that a quarter tsp will give me 2mg. I'm taking a week break to trial ARA-290 peptide because I wanted to get started on that, and then will start titrating up with the TAF. I understand the potential for resistance with titration, but we do what we can do with these poor sensitive ME bodies!

 

[godlovesatrier]

Sounds like a good idea. I was surprised I could tolerate 8mg tbh. But the flu like symptoms were horrid. Even my eyes hurt a bit. These are all the areas that hurt the most the first few years I had ME. So we will see.

I'm not sure if the stuff is immunomodulatory like tenofovir is...but I assume it must be?! Not sure.

Sore throat didn't really go away. Still there. Will see how it goes. No flank pain so far. No post nasal drip. No allergic reactions.

 

[godlovesatrier]

http://www.x-rx.net/blog/2011/12/update-from-michael-snyderman-md.html

 

[godlovesatrier]

Not much to report today. Brainfog felt a lot worse before taking the TAF than it did afterwards. Have had a strange sensation in my right flank but it also wraps round my back. Torso has had some mild aches and pains today and yesterday anyway.

Cough isn't as bad today. Brainfog still there just not as bad as yesterday. I do have muscle fatigue in my arms and some in my legs.

I've felt like this before and then had terrible crashes on antivirals so I'm a bit worried about that happening again. My joints continue to hurt post dose a lot more than they do pre dose. I also had pain in my temples today for about an hour.

 

[godlovesatrier]

Day 3 12mg

I've switched to taking the drug at 8am. So far so good brainfog tolerable reaction times ok. But fatigue and aches are kicking in. It's been one hour and I took 12mg which is the full dose myhill recommends. She cautions about taking 25mg a day as it may be too much. But then Hip confirmed that the amount of tenofovir in TAF is lower than taking tenofovir so....it's not clear really if that matters or not.

Basically 12mg of TAF is equivalent to 150mg of tenofovir (viread). One patient who Hip has in his recovery thread went into remission at this dose.

Also hip confirmed that this drug is a potent th2 to th1 modulator. Due to its effects on cytokines.

I do think I have been experiencing some of these immune modulating effects. I feel pretty good today and didn't crash after going for a short walk last night thismorning.

One thing to note is that I have gland pain under both arms (armpits) today at this higher dose of 12mg. It's mild but noticeable. I personally believe this is another area ebv likes to invade but I could be wrong.

As I have already cleared out my tonsils, throat and neck with famvir and valtrex over a period of 2 months I'm not really surprised that I haven't had any symptoms in this area.

The only side effect so far is dry mouth which is annoying because it causes me major dental problems. I'm due to see an orthodontist for tooth realignment soon but I'm not convinced they will be able to do anything. My eyes started to feel a tad dry on Tuesday. I assumed it was from the heatwave but I think it's the drug.

Also TAF can deplete cellular and mitochondrial antioxidants like gsh and others. So I'm glad I'm on Josh's protocol as I take all this stuff already. I'm also taking an electrolyte pill that has magnesium, sodium and potassium in it.

I'll update again later.

 

[godlovesatrier]

@Shanti1 how are you getting on? Experiencing any of the sickness worsening symptoms I am?

Still got the weird ache in my sides that I had from the valtrex. Feels a bit like my torso is being squeezed. It's not painful though at present just a bit annoying. Feeling ok tonight just very spaced out I think insulin sensitivity is a bit worse around mealtimes. As I can't wait to eat food as easily as I could before.

 

[Shanti1]

@godlovesatrier Thanks for documenting your experience and for posting the useful info from Hip and Myhill. I took a break from the TAF because I wanted to trial the peptide ARA-290 (which I will continue with), but plan on starting TAF back up tomorrow or Monday at 2mg and then move up from there.

Even though I only took a few doses previously, I can relate to some of the side effects you mention. I also had a weird soreness in my torso/sides that couldn't really localize, but especially noticed because I use an abdominal compression wrap for my orthostatic intolerance. If it comes back when I start the TAF back up, I'll get a chem screen to double check my kidneys.

I also found that my appetite increased, I did not want to wait for my usually breakfast time of 10am and then ate more than usual. However, I was also slightly nauseous at times from the med.

Had some increase in fatigue and somnolence but the what I disliked the most about TAF, and what has caused me to decide to restart low, is the irritability (code for psychotically wrathful) it caused.

I have not had sore throat or swollen lymph nodes, but I have also been on Val 1g tid for a year now.

 

[godlovesatrier]

Interesting. It's not just me then.

The last two days at 12mg I've been struggling with coldness especially in the afternoon and raised body temp after food which sounds odd but it's true! I feel irritable but only when I'm feeling really tired/exhausted from the drug.

Also experiencing nausea as well. Annoyingly I've just ran out of reishi and my mitos are crashing - life extension reishi protects mitochondrial cells from stress so I am a bit annoyed I've ran out. More arriving on Wednesday. I'm taking mushroom gold in the meantime which is like a poor man's reishi.

Getting my kidney tests next week.

What was your brainfog like @Shanti1 ? And dry mouth? My mouth is a lot drier for several hours after dosijg.

 

[Shanti1]

@godlovesatrier Funny thing is that brain fog used to be my worst and most debilitating symptom. I worried I was getting early dementia and hoped that no one at work would notice. Now, after, a year on valac and using some off label meds that I think helped regulate my neural pathways, I almost never have brain fog.

I do still get mental fatigue, but not that feeling that my brain is working in slow motion and I can't grasp simple concepts. My main symptom now is orthostatic intolerance (something I only developed in April) leading to fatigue and poor cognition.

Ok, so that being said, I did notice some slight brain fog in the morning with TAF, but I more so noticed a slight worsening of my OI and mental fatigue.

If I had to make an analogy, mental fatigue would be akin to it being difficult to climb stairs because your legs are tired and brain-fog is like you can't climb the stairs because your legs are paralyzed.

 

[Shanti1]

No dry mouth, but on the third day I thought my eyes might be drier than usual. But then I stopped taking it so not really sure.

 

[godlovesatrier]

Yes it does feel like dementia, even though I have it milder than some when I get an attack of brain fog, I can't take in any new information, form memories or retrieve information. It's an absolute nightmare at work, but generally it's only when doing treatments that are new or antiviral or immune modulating that I experience this kind of issue.

I am sure I read recently that Dr Chia advises patients to take Inosine to draw out entereoviruses to expose them so that certain drugs can then get rid of them. Off topic but I am wondering if these drugs are enough by themselves.

Anyway my day 4 update: I took TAF at 9am, I felt pretty unwell and had a major worsening of symptoms after going out at 11am and then recovered fairly quickly from that and started to get better about 5pm. I've noticed this worsening is usually, not one that induces a crash or worsening of ME and lasts about 8 hours.
I did 5 hours of re-organising and moving boxes from about 5 till 10pm and felt really very good to be honest. I had zero pain in my sides that day too so not sure what that was all about.
Woke up at 5am with a sore throat but no PEM - I just felt dizzy to be honest and I guess a bit tired, you could argue it was a pre PEM state. Whereas normally after that much activity and no bcaas and no glycine/benzoate, and no oat bran, I'd have felt pretty crappy. So I was surprised. I took 12mg at 5 as I was wide awake at that point prob with inflammation from the pre crash state, that relaxed me and sent me off to sleep. I woke up at 10am, could have slept for longer. So it seems to be normalising sleep too....i think

Day 5 woke up at 10am, was still experiencing some herx from the TAF, so mild brainfog, joint aches and pains, inc fatigue in legs mainly. But that was it and this was all induced by TAF, so the drug and immune system attacking something is my theory.

So I am hoping the majority of the effects will wear off in a few hours and then I'll prob have tons of energy if yesterday is repeated. I'm waiting for the main "responder" symptoms to abate from the drug before seeing how much I can do but I feel quite optimistic.

This is the first drug I have been able to take at the correct dosage every single day without major side effects or issues (so far). So I am pleased to have found something. Mind you Gilead held this drug back from HIV patients for years even thoguh they knew it was a better drug, probably because it didn't make them as much money.