Gilead knew that Truvada was toxic before 2004...

[Mishma]

And had started research on a safer version (TAF) at that time. The company stopped their research and only restarted it because the patent on Truvada is expiring in 2018.

And we're still schlepping Truvada as PrEP. 

http://www.latimes.com/business/la-fi-gilead-20160529-snap-story.html

* For acute infection and for those younger patients or in resource poor locations, Truvada has it's place.

[leatherman]

truvada simply has a higher toxicity than we would like. I've been taking Viread/Truvada since 2001 with zero side effects - the same as the vast majority of Tenofovir disoproxil users. While I certainly agree that TDF is a much better medication, and that TAF does have it share of negative side effects, let's not throw out the baby with the bathwater. Every HIV medication has it's share of bad side effects for a small amount of the patient population. There are no 100% side effect free meds (of any kind!) on the market. (Aspirin still kills 100s of people a year yet it can be found cheap on store shelves for anyone to purchase - with little notice or worry about it's deadly potential) However, because some people have a negative reaction doesn't mean the med doesn't work fine for a large number of people.

what then would you suggest we "schlep" in place of Truvada? There's never going to be a side effect free drug to offer HIV- people, but if we weren't offering Truvada, right now there would be no PrEP option to offer at all.

The research originally stopped because they had developed a medication with a high tolerability rate. No company is ever under a mandate to further improve a medication - although as consumers we certainly would hope that research and refinement would continue. After years of successful Truvada therapy for patients, the company re-visited this medication to improve it further - as other current HIV meds are improvements on previous meds.

whether a decade ago gilead, knowingly with precognition, stopped research on TDF, willfully endangering the life and health of patients, for the sole motive of profits to be made when they developed TDF as a response to the TAF patent expiration is definitely an issue will need be decided by a court.

* For acute infection and for those younger patients or in resource poor locations, Truvada has it's place.

some estimates are that 627,000 of maybe only 850,000 PLWH in America take Tenofovir as part of their HIV regimen, so Truvada already has a place beyond the groups you mentioned.

[Mishma]

Physicians are trained to first and foremost-Do no harm. Truvada has proven toxicities. Condoms, to my knowledge, do not.

And to compare Asprin to Truvada is disingenuous and misses the point.


I will be joining this lawsuit.

[Wade]

I'm with leatherman on this one .
I've taken Viread since it was approved and have no kidney issues
and my bones were strong enough to take on 2 knee replacements.

Truvada is keeping many from being newly infected and to me the risk is outweighed.
I also don't think there is a drug on the market that is with out side affects.
I took some of the worst of the worst and would do it again ...they saved my life.

[leatherman]

Physicians are trained to first and foremost-Do no harm. Truvada has proven toxicities.

what medications are you currently taking? I hope they are doing well for you, keeping you healthy and UD. However, there are people taking those exact same medications having a horrible time with both long and short term effects. Do you plan on filing suit against those companies also?

I will be joining this lawsuit.

that's good. please make sure to keep us up to date on the proceedings. I'm just as anxious to see 1) if gilead did this knowingly; 2) if they did it with malice; 3) if they broke any laws; and 4) how government can in any way force the pharma industry to constantly re-evaluate and update their medications to provide as close to 0 side effects as possible (or "no harm" as you mentioned).

[Mishma]

Leatherman

I know all this and my remarks were for PrEP, and not for acute infection-as I posted. Two different beasts, yet as the article points out Gilead will be promoting TAF for acute infection-by comparing it favorably over Truvada (and other formulations).

I'm currently on mono therapy with Tivicay and undetectable, but I still struggle with cognition and periodic flairs. Since we don't test reservoirs and rely solely on blood levels and CD4  counts, I'm in a holding pattern until there is enough virus to measure, specifically enough to ascertain whether or not I would be suitable candidate for Selzentry. Believe me I want to add another drug as I too am concerned about resistance.

Mind you the bone density issues really didn't become problematic until I started getting joints replaced and had a tough time healing. Likewise my kidney function tests were all within the purported acceptable limits yet when I stopped the drug, and within 3 weeks, I lost 16 lbs-presumably  the water I was retaining.

The only physician I was seeing that said the nucleotides were toxic was my neurologist. When I stopped both my peripheral as well as autonomic neuropathies improved.

[leatherman]

while I'm certainly sorry to hear about all the issues you've been dealing with, your experience is vastly different from how the majority of people have used the med without any of the issues that you have been subjected too.

what's a periodic flare?

I also thought there was a resistance test now that could be done with a very low viral load.

"Believe me I want to add another drug as I too am concerned about resistance." I have no idea what that means.

have you ever used an entry inhibitor? why wouldn't selzentry be suitable?

how in the world did you ever end up on a monotherapy regimen?!?

there seem to be a lot of oddities with your situation that most people taking truvada never experience.

Two different beasts

not really. truvada works the same way stopping HIV in a PLWH as it works stopping HIV in an PLwoH. the mechanics of Truvada are the same.

[BT65]

I'm with leather and Wade on this.  I took Truvada/Isentress for years without any issues.  I was on Stribild and took it until I ended up in the hospital this last time with one of the issues being acute kidney failure. However the Truvada component in the Stribild wasn't the main culprit-I had sepsis.  I've also had pretty bad osteoporotic issues so the ID doctor took me off the Stribild and replaced it with 6 (yes, six) different HIV meds.  The only reason she did that, however, was to not worsen the kidney/bone issues.

Also, yes, resistance testing can be done with a very small viral load.  I had been faithful in taking my Stribild but when the ID doc wanted to switch meds, she did a resistance test. My viral load at that time was very near UD.  (She found out I am resistant to the whole class of NRTI's).  So I'm not understanding why you cannot have a resistance test, Mishma.

There are so many drugs that cause many side effects.  Look at chemo and all the issues that causes (hair loss, anemia, vomiting, etc.).  But if a person with cancer has the chance of going into remission, they usually agree to the chemo. Not everyone, but I would say most do.  It's the same way with every potentially serious medical issue.  Some take the treatment and live for years, some don't and don't live that long, for fear of all the side effects.

I've never heard of Truvada causing neuropathy.  I have peripheral neuropathy but it was started by the old HIV meds and was worsened by uncontrolled diabetes. 

I believe Truvada as PreP is an excellent alternative.  And I'm sure people who use it for that would agree.  Everyone has the right to take/refuse treatment for whatever.  But Truvada has been invaluable to thousands.

Betty

[aztecan]

Dr. Joel Gallant, formerly with Johns Hopkins and now in Santa Fe, spoke a few months ago about about this subject.
He said the bone loss that occurs with TDF (Viread) usually occurs in the first year, and normally doesn't worsen significantly after that. He was speaking specifically about using Truvada for PrEP.

The problem with using Truvada for PrEP is that most doctors aren't up to date on what they need to do to follow up a PrEP patient.
They should have regular testing to monitor kidney function, among other screenings.

I have been on Truvada for years now, but I am not a good example because I also took Crixivan and AZT for more than a decade.

Truvada does a good job with PrEP, and until they do further studies to determine if another drug, say Descovey, which contains the reformulated TAF, works and is apporoved, it is all we have.

I am less worried about people taking Truvada for PrEP and more worried about the 70 percent of the pozzies out there who are not virally suppressed.

HUGS,

Mark

[mecch]

"Toxic" with no qualifiers is scaremongering, in my opinion.

[BT65]

"Toxic" with no qualifiers is scaremongering, in my opinion.

Mecch, while I appreciate your reply, please remember this topic is in the long term survivor's section and from what I recall you should not post here.  You could always pm the op if you need to discuss further.  Thank you for your cooperation.

Betty