[Toxicity] How often should we change meds ?

[lawrence]

Given the toxicity of ours treatments, and the fact that we should not expose ourselves too long to the same toxic effect in order to spare our organs, how often should we change meds ? Does it make sense at all to consider that changing meds every - lets' say - two years could be an efficient way to protect us against irreversible damages ?

(Just a question I'm asking to myself, and willing to share with you.)

lawrence

[mecch]

What combination are you on?
What combinations of drugs are available to you, based on your virus and based on your location/country?

Why is it a "given" that our treatments are "toxic"?  (None of my doctors said my treatment is toxic...)

I have never heard -- in the last few years -- of people on the newer molecules, having to change combos, to avoid "toxity".  Where have you heard this is happening? 

I do realise that it's good to change from older molecules to newer ones. 

I do know everyone is different so might discover one combo really is less noticeable and less disagreeable than another.   

But, once someone gets on the best one for "right now" - I assumed the objective is to stay on it for the long term, until newer, even better molecules might come along.

What "toxicities" are you experiencing - perhaps you can elaborate so the discussion and feedback can be practical... 

[leatherman]

I would suggest that you misunderstand the nature of HIV treatment/medications in 2014. You seem to be laboring under a notion about the early meds from the first of the 90s.

if you google up the name of your meds plus the words "package insert", you can read all the info about your med. You'll find these meds have been FDA approved because they are NOT toxic. These are medications, not poisons. (Causing side effects and being toxic are very different things) Many meds only cause long term issues in about 2% of patients. So once you find a regimen that works properly for you (remain UD, steady CD4 count, few to no side effects) there may be no reason for you to ever change!

Personally I have been on Norvir since 1996 (though it's now improved in a tablet form and not in liquid) and Reyataz since 2003. My current regimen is over 10 yrs old and since I remain UD with no side effects, there is no indication that I should ever change.

[mecch]

OK I read your other posts
I hope you get relief and less side effects with your med change to Isentress.
Also I hope you come to view HIV medication in a better light, and not "toxic".

[lawrence]

OK I read your other posts
I hope you get relief and less side effects with your med change to Isentress.
Also I hope you come to view HIV medication in a better light, and not "toxic".

Guys,

I changed my treatment because of a supposed side effect (rilpivirine's somnolence), not because of its toxicity. If I wanted to avoid toxicity, I would have changed the Viread first, because of the well documented long term bone and kidney effects of the tenofovir. See eg http://www.poz.com/articles/hiv_tenofovir_kidney_761_18085.shtml
or http://www.poz.com/articles/new_tenofovir_761_24538.shtml
or http://www.poz.com/articles/bone_density_761_24209.shtml

The long term toxicity of the ARV drugs does exist and that doesn't mean that there're not efficient. Toxicity and efficience are independant of one another.

There are plenty of examples in the scientific literature, just a few more ones here : http://www.poz.com/articles/hiv_reyataz_kidney_stones_761_22893.shtml
http://www.poz.com/articles/hiv_efavirenz_neurocogntive_761_22999.shtml
http://www.aafp.org/afp/2011/0615/p1443.html (about the toxicities by drug classes)

Now you know that I was not mixing up side effects and toxicity, and that ARV toxicity really exists, even with the newer drugs.

So that I ask my question again : I am actually wondering if change meds regularly could be a good way to reduce the well established long term toxicity of our HIV drugs, by sparing irreversible damages to our organs.

I'm interested in any insight on that subject

[mecch]

OK that's clear.

I will be interested to learn if you find any research(era) or doctors who have something to say about your proposal.  I suppose it makes sense.

I am sometimes afraid that the establishment can't spend too much energy "fine tuning" treatment.  For example, more tuning on the dosages of the molecules.

Also its always a challenge to get one's own doctor(s) to be comprehensive and proactive.

[lawrence]

Yes, that is exactly my point : optimization of our treatments, through other dosage (llike efavirenz - Sustiva - 400 mg instead of 600, see ENCORE study), or precisely alternating...

The usual medical answer is that the complications due to the long term toxicities can be treated... Sure but I would prefer to be told how to prevent them (I think I take enough pills).

[leatherman]

optimization of our treatments,

optimization of your treatment can be done through therapeutic drug monitoring. Of course it'll cost money and time to fine tune your treatment; but that's the only clear way to break from the one-size-fits-all dosing that clinical studies develop for FDA approval.

or keep changing regimens (time and cost again) until you find the treatment that doesn't have any toxicities for you. (It took me 14 yrs and 18 meds to find the regimen that has resulted in successful treatment with no toxicities.)

[mecch]

or keep changing regimens (time and cost again) until you find the treatment that doesn't have any toxicities for you. (It took me 14 yrs and 18 meds to find the regimen that has resulted in successful treatment with no toxicities.)

I am assuming Lawrence considers it a "given" that all antiviral molecules are toxic over time.  Is that what you think, Lawrence?

The reason we piped in Lawrence is because over 25 years of HAART and many years in this forum, lots of people facing no choice but to being treatment have outlandish and unfounded exaggerated fears of the horrible toxic meds.  Thats why I was saying its not the most constructive way to lead off your conversation, in this particular online forum.  Its counterproductive.

But I do get the gist of what you are looking for, and I hope you find the doc and resources to get the fine-tuning you would like to think is possible.    Hopefully you will and you will post information and your experience for the rest of us.

[lawrence]

No, I wouldn't say that I'm sure that all molecules are toxic over time, but anyway, many of the most used are (see the links I have posted above). And concerning the newer ones, its' too early to know

If this subject is unpleasant 'on this particular online forum', could you tell me on which forum it could be discussed ? An idea ? Thx...

[Jeff G]

No, I wouldn't say that I'm sure that all molecules are toxic over time, but anyway, many of the most used are (see the links I have posted above). And concerning the newer ones, its' too early to know

If this subject is unpleasant 'on this particular online forum', could you tell me on which forum it could be discussed ? An idea ? Thx...

You are welcome to discuss it here . It's not possible for the vast majority of people to have doses Taylor made or adjusted on an individual basis and I would not encourage members to get hung up on trying to do so . A fixed dosed regimen of meds after 1995-6 has served most of us well and although I would welcome better treatments I do not think its necessary for us to mess around or pay huge lab bills to personalize a HIV combo .

I would need to see studies that demonstrate that there is a benefit before I would even waste my time exploring altering the way I take my meds .

[leatherman]

many of the most used are (see the links I have posted above).

right, check those links. These meds are not "toxic" for 100% of patients; but only for a small percentage of people. Sadly, there really isn't any way to test beforehand what meds at what level are toxic for each of us on a individual level. Thankfully though, studies have shown that most meds at the prescribed dosage are not toxic for >90% of patients.

[mecch]

Lawrence I said no where that your topic is "unpleasant".  I explained the context - that many people come here with huge fears about "toxic" drugs.

The way it works around here is this. 

One day someone will post something about superinfection and virulent strains, or some such thing, and within 2 weeks all the OCD types or ignorant newbies will start posting their newly fired-up fears of super-infection and resistance and blah blah blah.

I'm sure you are onto to something interesting, I was just giving you the context for the response you are getting. 

There are many many barriers to overcome to achieve and sustain "ideal treatment", and for a population??!  Geez, good luck.  For an individual, sure, depends on access and resources.  What you would like to be possible is a pandora's box of challenges, that's for sure. 

There are often so many barriers to joe average toutlemonde treatment, that someone going on about the "given" of HAART toxicities can be counterproductive.... in that context above.

So I put myself in enough to "get" you -- can't you return the critical distance to "get" us?

[mecch]

Its not clear that its scientifically defensible to say "given the toxicity of our treatment".
Its not clear there's an automatic need to change meds, or often... because of this supposed "toxicity".

Your thread title presents a fait accompli that a lot of people will see as such. 

[lawrence]

I understand what you mean, mecch. I have already experienced on another HIV forum how you need to limit the questionings not to afraid some fragile people. I can only accept it even if it's a lost - because they're the majority.

The moderation can modify the title of this thread if it's problematic, a source of trouble. Or even suppress it, I won't make any scene.

[Jeff G]

I understand what you mean, mecch. I have already experienced on another HIV forum how you need to limit the questionings not to afraid some fragile people. I can only accept it even if it's a lost - because they're the majority.

The moderation can modify the title of this thread if it's problematic, a source of trouble. Or even suppress it, I won't make any scene.

I think the point is we have to keep things in context and fact based ... you are free to choose you own words as you have done ... no need to modify your post as we all have been able to get well rounded responses to the issues you want to discuss .

[lawrence]

ok Jeff, I see. No problem. I will look for a more adequate place for my questions and if I find some interesting evidence-based results, I'll share them with you.

[Miss Philicia]

You won't find any reputable evidence for your theory but have fun looking for it.

[lawrence]

Do you mean that I'm going to waste my time anyway ?

[Jeff G]

Do you mean that I'm going to waste my time anyway ?

What you do not seem to grasp is that when we get our labs done our doctors not only look to see if our meds working they are also looking to see if they are causing problems with the liver or kidneys or causing metabolic problems . Where you go wrong is assuming that meds are automatically toxic and you need to do harm reduction ... if you have a doctor worth his salt he/she will let you know if your meds are having a toxic effect on you when labs are done so, that's harm reduction and assurance that your meds are a benefit and not a liability .

[MitchMiller]

I actually read about a doctor that was doing this in her practice back in the early 2000's.  She was alternating Viramune and Sustiva. 

I asked my PA at the time about doing it and she said they don't do that in their practice, so that was the end of the discussion.

[lawrence]

Thanks Mitch. Same for me, docs don't like that because it isn't a recommended practice (no clinical studies, no experience).

Jeff please... Making reassurance is okay, I understand that it's part of your job here. But I wonder if your have read the thread ? I'm not assuming anything, I'm just questioning myself about something. And believe me, I do grasp that docs care about their patients' health and look at toxicities, but I also grasp that things can always improve, and I'm sure that they will - but they won't if patients don't want it.

Please let me leave the forum in peace, don't come and provoke me each time I try to go I could do it to you too but I don't.

[Jeff G]

Thanks Mitch. Same for me, docs don't like that because it isn't a recommended practice (no clinical studies, no experience).

Jeff please... Making reassurance is okay, I understand that it's part of your job here. But I wonder if your have read the thread ? I'm not assuming anything, I'm just questioning myself about something. And believe me, I do grasp that docs care about their patients' health and look at toxicities, but I also grasp that things can always improve, and I'm sure that they will - but they won't if patients don't want it.

Please let me leave the forum in peace, don't come and provoke me each time I try to go I could do it to you too but I don't.

I didn't realize that trying to have a conversation added up to provocation . I did read the thread and I not only posted what I did to benefit you I also posted so that other people that are on the fence about beginning meds have accurate fact based information .

I hope you decide to stay ... if I ran off every time I was disagreed with my legs would be huge  . People responded to your thread because they care and not to attack or provoke you, so give us another try why don't you . 

[zettainaoru]

Since I still use AZT (until next month probably), well, yess its toxic. but it certainly save my lives.

And... in some regiment you can decrease the toxicity without decreasing the effectiveness of it. Like adding Vitamin E or resveratrol to AZT. (yes, this is scientifically proven). OR Vitamin D to Tenofovir. Not sure about the others.
The mild anemia i got from AZT was gone after i took Vitamin E.

[xinyuan]

lawrence, you pose a very good dilemna. We are living longer with these therapies after all. Adverse effects, toxicities, etc. are always at the back of doctors' minds. Hence, everyone on cART should be monitored with routine labs.

It's not like the issues are unmanageable. Since I'm on Truvada, I get my kidney labs and take Vitamin D routinely.

Also, it isn't like doctors aren't trying to improve things.

There were trials attempting treatment interruptions, after all (which grandly failed, and no one in their right mind does this anymore). Several posters here have cited trials using alternative dosages. Heck, we've been seen more trials with regimens without NRTI's ("nuc-sparing").

My caveat: Don't go experimenting on your own, don't ignore your labs, and make sure to discuss changes with your physician.