Sharing some good news - HAART works!

[mecch]

I am a newbie around here and have been contributing to some of the threads.  I think this virtual community is very worthwhile, thanks to all of you -- you help me feel normal again.

Just wanted to share the fact that I went on Sustiva/Truvada 6 weeks ago and I just got my first labs on meds and its so amazing. I seroconverted in early May this year and my viral load skyrocketed into the millions and never went down.  The only good news then was I had a virus with no drug resistance.

Docs eventually concluded my immunity was not able to fight HIV.  So finally my doc put me on HAART and I went from 3,700,000 (early August) to 2,600 last week. Thats not a typo - 3 MILLION+.

He says this is a super result (4 log) and expects undetectable by XMAS.

Look, I've had poz boyfriends and lots of poz friends and I read the science and I know all about all the crappy side of HAART, so I wanted to share at least this moment in my experience - which is super.  No side effects!  Feel fine (and I felt quite "different" in the summer with 4-5 million viral loads).

Thank you - THANK YOU THANK YOU - to all the AIDS activists and all the health advocates and officials and all the scientists who developed these drugs!  I guess the drugs are a mixed bag, but....

For the time being, at least, I am so content and so glad to take those 2 pills every day!

Best to all

[Assurbanipal]

Congratulations!

... and thanks for posting your "only positive" side effects story -- there's a lot of folks who worry about starting meds and it's good for them to see these type of results.

Glad you are feeling great.
A

[WillyWump]

Mecch,

It's nice to hear this.....makes me feel a tad bit better about starting meds

Will

[Peter Staley]

Great news, Mecch.  And I ditto the other comments -- we don't always hear from folks that have no issues with their treatment.  When I talk to most of my friends who started treatment in the last few years, most have had no issues.  Certainly, some do, and we shouldn't at all discount those experiences.  I'm just glad to see both experiences expressed here.

Peter

[prayerblue]

Whoa... I don't get it... so some people DO need pills just after seroconversion? But awesome to hear no side effects... very inspiring, keep up the good work!

[mecch]

Prayerblue -

You know the various reactions possible to an HIV infection?  Some people get seroconversion sickness. Some not. Some people get viral loads in thousands or millions, some not.  Most seroconvertors, even those with initially high viral loads, then get a natural kick of the body's own ability to control HIV. This can last months, years, forever.  That's why a "standard" time to AIDS in the old days was a decade, maybe.

This is not my speciality but I can provide a gross summary:

A few years ago, some rich countries experimented with treating sero-converters with HAART (the pills -- tritherapy, highly active anti-retroviral therapy).  This was subsequently abandoned for many different reasons.  For instance, you wouldn't want to give HAART before you knew which regime of drug would best fight the specific virus and its resistances.  (I read that in Japan even today the give HAART without genotyping - what a shame!)  Also, a few years ago, they experimented with treatment at infection and then subsequent treatment interruptions -- and that didn't work out for the vast majority.

Also, it is bejesus EXPENSIVE in a rich country -- cause they are paying FULL PRICE for the treatment to their own companies that developed the drugs.  (I read that generic Atripla produced in India - totally in the grey market - is working well in recent tests in India!) 

The actuaries NOW say it would be cheaper to treat on seroconversion - because it leads to less sicknesses that are expensive to treat, AND because statistically it would lead to less overall people with HIV. In fact, in NYC there are statistics it would be economical to treat "high-risk" negative gay guys with permanent PEP - e.g. Truvada.  Get it, BEFORE infection, and even with only a predicted 50% prevention result.  (Morally questionable but... interesting to say the least).

Specialists in my country say the pendulum is swinging back again, now, in 2008, to more aggressive selection for treating more people at serocoversion - and continuously for life. (Or until there's a cure.)  Individual insurance companies don't like this idea - they'll have to foot the bill. 

I suspect treatment at conversion will happen in socialist countries first.

At the Mexico AIDS conference this summer there was a hopeful message that if HAART continues to improve. eventually (NOT YET!) very specific treatment upon seroconversion could lead to treatment interruption that will become a "functional cure".

I am in the unfortunate (rare) category of genetically not producing an effective natural antibody resistance for the HIV virus.  Stranger still, my CD4's were improving despite viral loads in the millions.

Doesn't matter actually -- HAART is working and specialists here say I should benefit from it as much as anyone else. Whew.

Also there are advantages to my being treated so quickly. If I am undetectable by XMAS that means a lot, doesn't it?  OK I'll eventually face all the POTENTIAL toxicities of treatment, but I have probably avoided considerable bodily and cognitive wear and tear that goes with years of untreated HIV infection. 

If some of the newer drugs now reserved for 2nd and 3rd line treatment of longterm HIV people are eventually approved for 1st line treatment, my specialist said that NO SIDE EFFECT treatment for "treatment naive" (and thus recent seroconverters) will become quite the norm.

As noted above, HAART is already quite improved from 10 years ago.

Its very important that recent seroconverters get the best medical advice and examination and followup possible and NOT be overwhelmed by the dire history of this scourge.  Be aware of how bad it was, or could be, or still is, but know it is not always applicable to your new circumstances.

Best to all

[prayerblue]

Thanks, mecch. Sorry to be so nosy... guess I like to see good stories from people responding well to treatment but the time-table threw me off... what the blank is toxicity, anyway? But again, this isn't about me at all, i'm just extremely glad to hear a recent converter doing well

[mecch]

Dont ask me, ask the treatment experienced and the doctors!  Liver problems. Nerve problems. Heart attacks. Weak bones. etc. etc. etc. The list is long. It ends in AIDs denialists who claim that HAART causes AIDS.

My doc told me NOT to read the drug side effect indications and to believe that HAART will work.  As someone said in another thread, you gotta believe in it and yourself.

[prayerblue]

Though I guess the truth is anything is better and more treatable (I'm hoping that toxicities can be managed and are not terminal!) than dying untreated from opportunistic infections, am i right?

[mecch]

Living is most often preferable than dying. That choice would be an individual decision!

I'm old enough to have had friends, lovers, refuse treatment (in the late 80's, 90's) when it really was toxic!
They died. That baggage gave me fear to take the meds. 

[prayerblue]

Sorry to ask you, I hope it is not an offensive question... but why would people CHOOSE not to take meds?

[funone]

Mecch,
Very good to read your posts.  Your happiness and relief are obvious.  Congratulations and here's to UD by Christmas!! 

Prayerblue,
In April we lost a friend who didn't take the meds.  We could only speculate as to the reasons for his refusal.  Some of us concluded that he couldn't afford the meds and that he had no insurance.  Apparently, though, in his apartment was a 'denial file'; a large pile of literature claiming that HIV did not lead to AIDS and that the meds were worse than the virus.  He was treating his symptoms with creams and vitamins, but not with HAART, and sadly, he lost the battle. 

I had just started treatment six months previous, so this was a sad, but invaluable lesson to me.   

I miss him.  Take your meds.

 

[prayerblue]

funone-

I'm not to where I'm on them yet, just tested and waiting for the next step... but I agree... I'm worried myself that I won't be able to afford the meds but I am no denialist...

I am sorry for your loss... truly. I want to see everyone treated and living a long full life... I just hope that I will have the chance to prosper and not develop resistances or have a strain (since I've not done phenotype tests or genotype yet) that is like hard or impossible to treat... but I digress, Ann and others say I'm putting the cart in front of the horse and that none of this is set in stone... but I appreciate your answer. If and when the time comes for meds and God willing either I get insurance or ADAP somehow, I intend to fight this bitch with all I have!

But that's scary... to not afford the meds at all? The caseworker I talked to said there's no reason for this to happen, at least where I am, because the state will cover you if you really cannot...

[mecch]

Prayerblue - not to panic but yes it is important to do your best to inform yourself about ADAP and/or insurance. I hope you will get what you need when the time comes.

Treatment costs -

I hear lots of poz Americans fall through the cracks - either not KNOWING about subsidies for treatment costs, or being on waiting lists???

Kinda funny story: When I went to fill my first prescription, I asked the pharmacist what happens if I am short changed in pill count, or if I need extra to carry in a bag and pack in a suitcase, or if they are stolen or lost (or fall down the drain, etc.)

I guess I must have sounded really weird cause she looked at me so funny!  I had just read of a American guy who HAD to fill by mail, according to his state ADAP, and his pills were late or lost and he was missing more than a week - so went non treated. Disaster.

In my country the pills are retail price too, highest prices in the world, but the pharmacist surprised me to say  "nobody is counting the pills, this isn't the English health service, sir. If you need pills come and get a refill and your insurance must cover it."

Why aren't Americans voting DEMOCRATIC and rioting in the streets for universal health coverage! What kind of scandal is it that such an advanced country can be sometimes so third world?

[newt]

nobody is counting the pills, this isn't the English health service, sir

We generally don't do that, we go to great pains to make sure people have enough of the meds they need while minimising wastage.

We thanks the US Government for lending us the money to start the NHS.

- matt (England)

[prayerblue]

well, hell, i guess money to start the nhs is thanks enough for letting us have our own country, so the nhs should be a model for hopefully the next democratic president of the united states...

*cough*shouldabeenhillary*cough*