Tenofovir Alafenamide anyone?

[Judee]

but the ART has improved this.

Can you refresh my memory on the ART meds you used to get this improvement? Like was it just the Tenofovir Alafenamide or a combo of medications and if a combo was there any that you felt were not really that helpful and could have been left out?

Thank you!!!

Edit: I'm sorry. I'm just too tired to read the whole thread.

 

[fingers2022]

Can you refresh my memory on the ART meds you used to get this improvement? Like was it just the Tenofovir Alafenamide or a combo of medications and if a combo was there any that you felt were not really that helpful and could have been left out?

Thank you!!!

Edit: I'm sorry. I'm just too tired to read the whole thread.

I take a combo pill of TenofovirAlafenamide and Emitricitabine...there is no logic or science to this, it is simply what I can procure without prescription. So I am limited. I think I may well get more improvement with access to other meds. It is not a fair world for ME sufferers. Maybe we all should try to get a Long/Post Covid diagnosis!!!

 

[Judee]

Thanks for answering. @fingers2022, Again I'm being lax but did you test positive for viruses and if so which ones?

 

[fingers2022]

Thanks for answering. @fingers2022, Again I'm being lax but did you test positive for viruses and if so which ones?

haha, I can't afford to pay privately for testing. In the UK, until Covid appeared, a virus was a mythical beast which phsicians had no interest in and certainly had no interest in treating. I did manage to get my GP to request an appointment with an immunologist, and this was firmly booked. However, the immunologist cancelled the appointment and said she couldn't help me...I suppose because it said 'ME' onn my records.
Now the NHS has setr up separate clinics for LongCovid - these have lots of phsicians and generally lots of resources. The existing ME clinics have just one physician assigned. Neither clinic has anything concrete or useful to offer. What a joke, I can't even get a prescription to source meds mself, so I am reduced to very limited DIY medicine. They can all fuck right off.

 

[Forummember9922]

Am i correct to understand the best way to try tenofovir alafenamide is allday chemist? in other words, are there none of those online bot doctor sites I can get it ideally from the US? Look forward to sharing results

 

[fingers2022]

I've just started Biktarvy...feeling pretty good...early days, will report back

 

[Forummember9922]

Would anyone have a guess - If I temporarily discontinue TAF for a month or two to try Sofosbuvir, will this increase the likely hood of mutations in EBV that could create drug resistance? Or conversely is there any hypothetical advantage to pulsing in this fashion?

 

[Judee]

Would anyone have a guess

Not sure of the answer (sorry) but just curious if you felt like you have been getting benefit/improvement from the TAF?

 

[Forummember9922]

Not sure of the answer (sorry) but just curious if you felt like you have been getting benefit/improvement from the TAF?

Im not out of the woods and everything I read said it would take 4 months maybe more to really know. Some posts said a year or more.

I have been exercising a little bit more. And then resting.

I did notice an interesting change post TAF where my personal region used to constantly look like I had just gotten out of cold water. Sorry if TMI. But most days that has reverted to what was normal pre CFS. This speaks to me as endothelial or nitric oxide related. But my mindset is the same - rubbish- and resting a lot.

 

[Judee]

But my mindset is the same - rubbish- and resting a lot.

So are you taking the TAF now instead of the Valtrex that you mentioned in another thread? (I'm sorry. I was unclear on that.)

And if so was the Valtrex helping your mindset?

Did starting the TAF feel the same as when you started the Valtrex? Maybe that would give you some indication if it will help.

It's just hard sometimes to wait for so many months that I'm always looking for some indication early that it's working. You too?

 

[Forummember9922]

So are you taking the TAF now instead of the Valtrex that you mentioned in another thread? (I'm sorry. I was unclear on that.)

Both

And if so was the Valtrex helping your mindset?

Honestly I think it does a little at higher doses

Did starting the TAF feel the same as when you started the Valtrex? Maybe that would give you some indication if it will help.

I dont know that I felt a TAF herx. Hard to distinguish from just a good or bad day.

It's just hard sometimes to wait for so many months that I'm always looking for some indication early that it's working. You too?

Correct. But indeed if TAF worked it would take months to see. Theres certainly some week 1 Sofosbuvir responders but most seem to be LC. Realistically though me reporting any data early would not hold weight either way even if I said I was cured.