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Author Topic: Toxicity of Medication / Alternative Choices  (Read 3182 times)

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Offline cityboy

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Toxicity of Medication / Alternative Choices
« on: August 28, 2008, 08:53:07 PM »
Went to a 2nd ID doctor to see what other options I have.  When I was diagnosed originally,  my CD4 was around 300 VL 100,000-200,000 approx.  He thought I might have been able to avoid meds for 4-5 years and my low energy could have been handled through other medicine other than HAART.  This really bummed me out since I was advised to go on HAART at the onset by my current ID doc.  I am on Reyataz, Norvir and Truvada now. 

Thanks to God I have no major health issues!

The thought of dropping Truvada for a period came up too as a means to curb toxicity.  Have any of you tried this and only took Reyataz and Norvir only,or any PI alone for that matter?

Have any of you weened off of HAART when taking it for a short time (just under a year) with any luck. 

Although I am told this is one of the best reigmens, the toxicity issue concerns me over the long term.
« Last Edit: August 28, 2008, 08:55:26 PM by cityboy »

Offline atlq

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Re: Toxicity of Medication / Alternative Choices
« Reply #1 on: August 28, 2008, 09:22:53 PM »
Thanks to God I have no major health issues!  

That's great ! So, why do you want to stop? Because of the potential of toxicity?

Truvada is one of the kinder nukes when it comes to toxicity issues. Relatively easy on the liver, and a little harder in a small number of people on the kidneys. Just have your lactic acid levels checked. If they are still normal by week 4, you should do fine on it.

However, if for whatever reason you choose to drop the Truvada, you must replace it. Reyataz (boosted with Norvir) should not be used as monotherapy, as broad based PI resistance would eventually develop.

BTW, I don't know who this 2nd ID you consulted is, but he/she sure doesn't sound very competent if they were suggesting that you could defer HAART for 3-5 years (!) with the numbers you have presented...
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline cityboy

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Re: Toxicity of Medication / Alternative Choices
« Reply #2 on: August 28, 2008, 09:33:42 PM »
Dr Paul Bellman, NYC



Thanks to God I have no major health issues!  

That's great ! So, why do you want to stop? Because of the potential of toxicity?

Truvada is one of the kinder nukes when it comes to toxicity issues. Relatively easy on the liver, and a little harder in a small number of people on the kidneys. Just have your lactic acid levels checked. If they are still normal by week 4, you should do fine on it.

However, if for whatever reason you choose to drop the Truvada, you must replace it. Reyataz (boosted with Norvir) should not be used as monotherapy, as broad based PI resistance would eventually develop.

BTW, I don't know who this 2nd ID you consulted is, but he/she sure doesn't sound very competent if they were suggesting that you could defer HAART for 3-5 years (!) with the numbers you have presented...

Offline atlq

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Re: Toxicity of Medication / Alternative Choices
« Reply #3 on: August 28, 2008, 10:02:16 PM »
I am quite sure he knows far more than I....Best of luck!
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline jkinatl2

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Re: Toxicity of Medication / Alternative Choices
« Reply #4 on: August 29, 2008, 02:30:07 AM »
Honestly? You are offered one of the least toxic (we are talking long term and lipo and stuff) regimen out there. There really IS no good "weaning" from the drugs. If you switch to, say, Prezista, it's basically going to be coupled with Norvir as a boost. So long as your kidney function runs okay (and for many folks it is a non issue) and you get past the initial side effects, I cannot foresee a serious issue long term.

Man of the alternative treatments currently available utilize AZT. Which, having taken that crap for years, I can attest to its ongoing toxicity. I simply can't tolerate it.

Might I ask what, exactly, are your concerns regarding Truvada?

On a related note, 300 is a trifle low for a cd4 count. Does Doctor B want to wait until you get to 200? Thats dangerous AIDS territory there, and full immune restoration is still a matter of debate, when treatment is initiated at that point. Seems like you are in a perfect window.

There are MANY workarounds for the side effects of the drugs, which for most people are mild and mercifully brief. Any other regimen, from a short bit of research, is going to be more pill-heavy, and perhaps even side-effects heavy.

To stave off the Norvir-generated intestinal stuff, I have been using loads of fiber. Mostly the stuff you mix in with beverages, but tablets and bars too. We are talking lots of it, until the side effects diminish. To offset the bone issues in Truvada, I was directed to take a calcium supplement. They have them all over the place, some are even chocolate. Me, I use Tums. Easier, and peppermint. Just drink water regularly to avoid kidney stones, and you would be all set.

There ARE alternatives, but man of them don't seem all that friendly to a person or his lifestyle.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline newt

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Re: Toxicity of Medication / Alternative Choices
« Reply #5 on: August 29, 2008, 04:21:20 AM »
This is an important question. A trial in the UK (PIVOT) is just starting to look at this.

My personal view.

The studies on boosted PI monotherapy to date are promising but small-scale. A big(gish) study (see above) is needed to define the parameters for success, for boosted PI monotherapy will be a successful maintenance approach for many -- but not all -- and the conditions for success need to be set out clearly. It may be that there are factors that can predict a greater chance of success, but - if they exist - we don't know what they are at the moment.

Long term impact of ARVs needs to be set against long-term impact of HIV. i am not sure toxicity is a useful word here really, many other drugs are much more horrid than combo, eg paracetemol.

Less meds is good, always, but the risk of resistance and viral breakthrough needs to be set against lower pill burden.

If you wish to consider this approach, ask yourself these questions:

- Is your adherence near enough damn perfect, both in terms of taking the tabs every day and taking them on time with food?

- Are you prepared to accept the risk (even if small0 of developing some resistance to your chosen boosted PI which may restrict your choice of drugs in the future?

- Would you rather wait until there's better data on when and how monotherapy works? In this long game, is another 36 months or so on triple combo too long?

All the best

- matt (who's enrolling in a boosted PI monotherapy trial)
"The object is to be a well patient, not a good patient"

Offline atlq

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Re: Toxicity of Medication / Alternative Choices
« Reply #6 on: August 29, 2008, 06:28:31 AM »
Matt,

I am really interested in the study you are enrolling in. Keep us informed....
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline cityboy

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Re: Toxicity of Medication / Alternative Choices
« Reply #7 on: August 29, 2008, 07:04:11 AM »
Matt, You raised very good points for me to consider.  I am still new to this.  My adherance since the start has been perfect except for one miss, after which I bought a 7 day pill box at the drug store so it would no happen again.

If there iare any internet links that you can supply me with rearding monotherapy, I would like to read them.

What was the reason you decided to particpate in the trials?  Can you give me a little more information about this trial you are participating in?  I would like to follow you with your progress.

Best of luck to you :--)




This is an important question. A trial in the UK (PIVOT) is just starting to look at this.

My personal view.

The studies on boosted PI monotherapy to date are promising but small-scale. A big(gish) study (see above) is needed to define the parameters for success, for boosted PI monotherapy will be a successful maintenance approach for many -- but not all -- and the conditions for success need to be set out clearly. It may be that there are factors that can predict a greater chance of success, but - if they exist - we don't know what they are at the moment.

Long term impact of ARVs needs to be set against long-term impact of HIV. i am not sure toxicity is a useful word here really, many other drugs are much more horrid than combo, eg paracetemol.

Less meds is good, always, but the risk of resistance and viral breakthrough needs to be set against lower pill burden.

If you wish to consider this approach, ask yourself these questions:

- Is your adherence near enough damn perfect, both in terms of taking the tabs every day and taking them on time with food?

- Are you prepared to accept the risk (even if small0 of developing some resistance to your chosen boosted PI which may restrict your choice of drugs in the future?

- Would you rather wait until there's better data on when and how monotherapy works? In this long game, is another 36 months or so on triple combo too long?

All the best

- matt (who's enrolling in a boosted PI monotherapy trial)


Offline newt

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Re: Toxicity of Medication / Alternative Choices
« Reply #8 on: August 29, 2008, 08:09:02 AM »
The trial in question is PIVOT (Protease Inhibitor monotherapy Versus Ongoing Triple-therapy in the long-term management of HIV infection) This is a parallel group, open-label,  randomised controlled trial, so there's no guarantee of going onto boosted PI monotherapy (depends on randomisation)

Some useful boosted PI monotherapy links:

Charting the Future of Protease Monotherapy - Aidsmeds
http://www.poz.com/articles/hiv_monotherapy_kaletra_761_14295.shtml

Lopinavir monotherapy: less potent than triple therapy with higher risk of resistance - i-Base
http://www.i-base.info/htb/v7/htb7-9/Lopinavir.html

A technical but accessible report of Kaletra mootherapy studies presented at the Int AIDS Society Toronto meeting in 2006

Resistance implications of monotherapy with lopinavir/r (Kaletra)  - i-Base
http://www.i-base.info/htb/v7/htb7-7-8/Resistance.html

This is an analysis of the MONARK Kaletra monotherapy study, perhaps one of the most important of these studies so far

Atazanavir/r monotherapy and CNS penetration - i-Base
http://www.i-base.info/htb/v7/htb7-9/Atazanavir.html

The /r means boosted. Suppressing HIV in the brain is an important consideration and this very small study suggests viral load in the brain etc may be higher on boosted Reyataz alone than with some nukes in the mix (but it's a very small study).

Pilot Trial of Regimen Simplification to Atazanavir/Ritonavir Alone as Maintenance Antiretroviral Therapy - CROI (reported on HIV & Hepatitis website)
http://www.hivandhepatitis.com/2006icr/croi/docs/021406_g.html

It is interesting to note that, in this v small (again) study, 2 of the 3 people who did not maintain viral suppression had no Reyataz (atazanavir) detectable in their blood.....

Early Virologic Rebound in a Pilot Trial of Ritonavir-Boosted Atazanavir as Maintenance Monotherapy
http://www.natap.org/2007/HIV/012307_02.htm - NATAP

NATAP report - more nerdy and in super-downsize me small text, so break out a microscope. NATAP concluded its report by deciding to  "...question the relevance and ethics of conducting further large-scale monotherapy studies of boosted PIs...", which, much as you gotta love em cos they's a good outfit, is an unjustified conclusion from this study (sounds good though).

The PIVOT study is pateint demand-led. People ask their doctors about the idea. People want to know what's what. People want to know it's safe and will work too, not just whether they can do it/the doc will let them.

- matt
"The object is to be a well patient, not a good patient"

Offline atlq

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Re: Toxicity of Medication / Alternative Choices
« Reply #9 on: August 29, 2008, 08:23:45 AM »
Thanks Matt - I'll get my geek on later and read through some of this stuff.....
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline hivsweden

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Re: Toxicity of Medication / Alternative Choices
« Reply #10 on: August 29, 2008, 01:39:36 PM »
Cityboy: While your combo may cause problems in the long term it is nothing compared to what a resistant virus can cause (or the regimen needed to combat the resistant virus).

My advice is to stick to the meds - they will help you fight the virus today and keep it at bay until such time there are even better treatments available with fewer long term effects.

Offline Miss Philicia

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Re: Toxicity of Medication / Alternative Choices
« Reply #11 on: August 29, 2008, 02:02:42 PM »
I am quite sure he knows far more than I....Best of luck!

Bellman is one of the very best doctors in NYC, though he's still an advocate of Hydroxyurea which is rather contentious subject.  I took Hydroxyurea for years in the 90's, and it's off-label for HIV infection.  I will let others speak to the subject of still using this medication.
"I’ve slept with enough men to know that I’m not gay"

Offline Peter Staley

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Re: Toxicity of Medication / Alternative Choices
« Reply #12 on: August 29, 2008, 02:10:24 PM »
cityboy -- you still haven't told us if you are currently suffering from toxicities.  If not, why sweat it?  Truvada does have one of the best records on both short and long-term toxicities (thus far).

Offline atlq

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Re: Toxicity of Medication / Alternative Choices
« Reply #13 on: August 29, 2008, 02:11:28 PM »
Bellman is one of the very best doctors in NYC, though he's still an advocate of Hydroxyurea which is rather contentious subject.  I took Hydroxyurea for years in the 90's, and it's off-label for HIV infection.  I will let others speak to the subject of still using this medication.


My initial question to City was not asked to find out who his ID is. I'm sure this individual is a fine doctor. I questioned the judgement of a hypothetical clinician who would advise a patient at 300 cd4's and a viral load above 100,000 that he could probably stay off of treatment for 4-5 years...i'd just like to hear more about the thinking behind this...particularly when current treatment guidelines suggest that treatment be initiated when either cd4's reach 350 or the viral load is consistently above 100,000...just curious...
« Last Edit: August 29, 2008, 02:17:41 PM by atlq »
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline Miss Philicia

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Re: Toxicity of Medication / Alternative Choices
« Reply #14 on: August 29, 2008, 02:16:58 PM »
Agreed.  That comment was pure bullshit.  I'd have left the office.
"I’ve slept with enough men to know that I’m not gay"

Offline BT65

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Re: Toxicity of Medication / Alternative Choices
« Reply #15 on: August 29, 2008, 03:57:30 PM »
Cityboy, I've been on tons of meds for years and years and I'm alright (kidney function wise, liver function wise).  And I was on some of the nastier HIV meds in the very early 90's.  If you're alright, I wouldn't worry about it. 

BTW, I went on a treatment break at the end of last year for three months and my CD4s went from 600 to 300. 

Good luck on whatever you decide.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline cityboy

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Re: Toxicity of Medication / Alternative Choices
« Reply #16 on: August 30, 2008, 03:29:00 PM »
To clarify, I am concerned with toxicity in the future, this is no an issue right now. 


cityboy -- you still haven't told us if you are currently suffering from toxicities.  If not, why sweat it?  Truvada does have one of the best records on both short and long-term toxicities (thus far).

Offline cityboy

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Re: Toxicity of Medication / Alternative Choices
« Reply #17 on: August 30, 2008, 03:41:48 PM »
These were his remarks which he was going to go into further detail with in the next appt after getting my labs back. 
Unfortunately, the office administrator , told me that they take my insurance ,which is an HMO, when I made the appointment.  When I get finsihed with the doctor they tell me that they assumed my insurance included out of network, which I do no have, so I got stuck with a big bill to pay.  Very angry - but I should have double checked my insurance too.   So I will no be able to go to him due to the cost.   

He is going to speak at Friends In Deed in NYC @ 7pm  on 9/24/08...is free so I can afford to listen to this maybe the information will be in the lecture. 





My initial question to City was not asked to find out who his ID is. I'm sure this individual is a fine doctor. I questioned the judgement of a hypothetical clinician who would advise a patient at 300 cd4's and a viral load above 100,000 that he could probably stay off of treatment for 4-5 years...i'd just like to hear more about the thinking behind this...particularly when current treatment guidelines suggest that treatment be initiated when either cd4's reach 350 or the viral load is consistently above 100,000...just curious...

Offline cityboy

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Re: Toxicity of Medication / Alternative Choices
« Reply #18 on: August 30, 2008, 03:45:04 PM »
Can you briefly tell me what hydroxurea does or send me an internet link?


Bellman is one of the very best doctors in NYC, though he's still an advocate of Hydroxyurea which is rather contentious subject.  I took Hydroxyurea for years in the 90's, and it's off-label for HIV infection.  I will let others speak to the subject of still using this medication.

Offline Miss Philicia

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Re: Toxicity of Medication / Alternative Choices
« Reply #19 on: August 30, 2008, 07:00:03 PM »
Can you briefly tell me what hydroxurea does or send me an internet link?



This drug was something that was used, experimented with, during the 90's before HAART became the standard.  It's actually an anti-cancer drug.

http://aids-clinical-care.jwatch.org/cgi/content/full/1998/401/1

You're welcome to google your heart out with "hydroxyurea HIV" but take note that many, MANY links will pre-date 1998 and the era of HAART and really aren't of much use as standard care in 2008.

I have heard that Dr. Bellman is still a strong advocate of using this drug, even though I'm quite sure that the DHHS has recommended that it no longer be given to patients.  You'll have to speak to Bellman personally to find out what his views are.

You may also be interested in this:

http://www.poz.com/articles/159_427.shtml

Quote
A year later, however, HU is back from the dead. New research, as well as ongoing studies by those who never doubted the drug’s potential, suggest it could have a place in the evolving science of HIV care. What’s more, Paul Bellman, MD, a top New York City HIV specialist who has successfully prescribed HU for years, is leading a bold one-man crusade to reverse the DHHS recommendation, publicly accusing those responsible of making a “serious error,” pandering to big pharma and “potentially jeopardizing” his patients’ health. Indeed, says Bellman, there’s more at stake than the fate of HU and the patients who take it. HU, Bellman contends, symbolizes HIV treatments outside the “HAART paradigm” of combination therapy, which, he points out, dooms HIVers to “a lifetime of antiviral therapy with brand-name drugs”—and the side effects they bring with them. The brawling inside story of the controversial DHHS decision—and the skepticism a variety of top docs shared with POZ about HU—capture a pill’s twisted course from promising treatment to dangerous drug and, possibly, back to promising treatment. But first, a brief science lesson.

and this:

http://www.hivandhydroxyurea.com/
"I’ve slept with enough men to know that I’m not gay"

Offline Miss Philicia

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Re: Toxicity of Medication / Alternative Choices
« Reply #20 on: August 30, 2008, 07:04:07 PM »

He is going to speak at Friends In Deed in NYC @ 7pm  on 9/24/08...is free so I can afford to listen to this maybe the information will be in the lecture. 


Who is "he" -- I may be in NYC on that date and if so am interested if this is Bellman giving a presentation.  Friends in Deed is about the very best organization of its kind I've ever encountered.
"I’ve slept with enough men to know that I’m not gay"

Offline newt

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Re: Toxicity of Medication / Alternative Choices
« Reply #21 on: August 30, 2008, 07:04:55 PM »
Hydroxyurea is an anti-cancer drug that can boost ddI and d4T (old drugs), but which is very rarely used now because of a high rate of side effects. But anyone starting combo treatment naive these days has no need of hydroxyurea. It's a difficult drug, and kinda unnecessary (did I say unnecessary for anyone starting combo treatment naive?)

- matt
"The object is to be a well patient, not a good patient"

Offline Miss Philicia

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Re: Toxicity of Medication / Alternative Choices
« Reply #22 on: August 30, 2008, 07:56:58 PM »
Which is why, matt, I"m still curious that Bellman, certainly one of the very top doctors in Manhattan, is a firm believer in this drug still.
"I’ve slept with enough men to know that I’m not gay"

 


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