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Tonight I officially start TAF - I'll put all my results here
For those that recall, I've been on the clinical trial for TDF vs. TAF. It's a double blinded study which means I do not which drug I was on. I tried asking my doctor today about this and he just smirked a little at me and said "we don't know" but I suspect he does know and opted not to tell me as per agreement/contract. However, this does not change the fact that going forward, I will now be treated with TAF for the remainder of the trial which last 9 months.
Anyway, I decided to mention to him that this new formula was going through FDA approval and he was well aware. I asked him how long would it take for it to be approved and he said about 9 months. He's very confident that it will go through without any hesitation.
Naturally, I asked him a series of questions, such as what happens if my insurance does not approve the new formula or if the FDA approves it before the trial ends or it does not get approved at all. Here were some of the answers I was given:
-If FDA Approves it before the trial ends, I will finish the trial as they want to collect as much data as they can.
-If FDA does no approve, the trial will be extended
-It's possible my insurance may not cover the new formula, especially if it ends up being significantly higher in price than the old formula. If that is the case, they can look at getting me onto the old formula or if it came down to it, switching me to entecavir.
-Price wise, they'd look at getting me a copay card to offset any of the pricing down the line. Asked about this and was told "could be a couple of hundred a month but we'll do our best to make it cheaper".
-I also asked about clinical trials down the line with them, which they said they don't have anything at the moment but I should look into the trials that are being aimed for the cure.
Overall, not only am I concerned about switching to TAF now (in case I have any reactions or symptoms come back) but what concerns me the most is the fact that they are even thinking about switching me from Tenofovir to entecavir. To me, this does not even make any since since Tenofovir works a LOT better.
Now, I did get a result back of my Ultrasound. Unfortunately, I have a cyst on my kidney that seems to be growing but my last blood test seems to be fine with kidney function. I also have a polyp on my gallblader which I have had for years now. More importantly, my liver: No abnormalities, perfectly normal.
On that note, I'll share my results going forward.. including the results from the blood being drawn today prior to TAF (which I should have in 2 weeks). For prior results, please see my old posts.
Please note, I am no doctor, I am a patient.... I know I get many questions via PM as if they are directed towards a doctor, but I can only answer so much based on my experience. Also, I have no way of getting TAF other than through this trial and do not know of any other way. Please feel free to ask anything you'd like. I'll answer my best and will give some feedback of the meds and how they are working for me down the line.
Anyway, I decided to mention to him that this new formula was going through FDA approval and he was well aware. I asked him how long would it take for it to be approved and he said about 9 months. He's very confident that it will go through without any hesitation.
Naturally, I asked him a series of questions, such as what happens if my insurance does not approve the new formula or if the FDA approves it before the trial ends or it does not get approved at all. Here were some of the answers I was given:
-If FDA Approves it before the trial ends, I will finish the trial as they want to collect as much data as they can.
-If FDA does no approve, the trial will be extended
-It's possible my insurance may not cover the new formula, especially if it ends up being significantly higher in price than the old formula. If that is the case, they can look at getting me onto the old formula or if it came down to it, switching me to entecavir.
-Price wise, they'd look at getting me a copay card to offset any of the pricing down the line. Asked about this and was told "could be a couple of hundred a month but we'll do our best to make it cheaper".
-I also asked about clinical trials down the line with them, which they said they don't have anything at the moment but I should look into the trials that are being aimed for the cure.
Overall, not only am I concerned about switching to TAF now (in case I have any reactions or symptoms come back) but what concerns me the most is the fact that they are even thinking about switching me from Tenofovir to entecavir. To me, this does not even make any since since Tenofovir works a LOT better.
Now, I did get a result back of my Ultrasound. Unfortunately, I have a cyst on my kidney that seems to be growing but my last blood test seems to be fine with kidney function. I also have a polyp on my gallblader which I have had for years now. More importantly, my liver: No abnormalities, perfectly normal.
On that note, I'll share my results going forward.. including the results from the blood being drawn today prior to TAF (which I should have in 2 weeks). For prior results, please see my old posts.
Please note, I am no doctor, I am a patient.... I know I get many questions via PM as if they are directed towards a doctor, but I can only answer so much based on my experience. Also, I have no way of getting TAF other than through this trial and do not know of any other way. Please feel free to ask anything you'd like. I'll answer my best and will give some feedback of the meds and how they are working for me down the line.
I don't believe there is a phase 4. I am on the last part of the trial already. If they don't get approved by FDA, then it'll be extended. In some cases, the offer to extend or continue even after approved just to collect more data.
1 Comments
Some drugs have Phase 4, it's just long term observation after drug has been approved.
Phase 4 are long term observation.
Save you money and get you TAF.
Might be worth asking your gastro about :)
Save you money and get you TAF.
Might be worth asking your gastro about :)
Wanted to update on there, since it seems like it's been a while. I've completed 3 months on TAF and guess what? I physically feel a LOT better. A lot of the things I was experiencing while on the TDF vs. TAF portion have almost subsided.
I got my blood drawn today and should have results in 2 weeks from it.
There is also huge news. I have been asked to extend my TAF formula study for FIVE MORE YEARS. I obviously said yes to this. During the 5 years, I will be coming back every 6 months instead of every 3 months. They will also be using my blood for additional research towards development of other drugs and a potential cure down the road.
Needless to say, I am excited for this opportunity to be involved in this. While I hope my body clears this virus within those 5 years, I am not at all upset about the extension and could potentially help many others in need.
I'll update when I have additional results.
I got my blood drawn today and should have results in 2 weeks from it.
There is also huge news. I have been asked to extend my TAF formula study for FIVE MORE YEARS. I obviously said yes to this. During the 5 years, I will be coming back every 6 months instead of every 3 months. They will also be using my blood for additional research towards development of other drugs and a potential cure down the road.
Needless to say, I am excited for this opportunity to be involved in this. While I hope my body clears this virus within those 5 years, I am not at all upset about the extension and could potentially help many others in need.
I'll update when I have additional results.
1 Comments
what sympthoms stopped when you've switched from TDF to TAF and what stayed ? Any better kidney/bones results with TAF ?
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