POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Horizon on October 21, 2010, 06:25:39 pm
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I wanted to reach out to you guys for some anecdotal accounts of unconventional treatment and adherence strategies. (eg taking atripla every other day or based on the FOTO study, or certain monotherapy strategies)
I am already aware of the guidelines to maintain adherence at a very high level (around 95% or better), but also understand that the amount of certain medications (eg Atripla) may be significantly more than is required for certain people. I also a know about the long halflife of Atripla.
Once a person has reached a sustained level of being undetectable, it seems there could be room for taking a different approach to treatment and thus minimising side effects.
Until such time as the current studies provide conclusive results, I wanted to hear from any people out there that may have adopted their own personal treatment strategy, weather with or without their doctors advice.
Many thanks
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I've been on quite a number of combos in the few years I've been on HAART.
My unconventional adherence strategy was to not wait to take a dose if I realised quite late that I had missed a dose. As soon as I realised I was late, maybe by half a day even, I took the dose and adjusted the timing of the subsequent doses. The goal is always to get it in me every day - and "day" i defined as the time I was awake. My ID gave me an OK for pretty wide hours for dosing, anyway. So occassionally I have stretched that further.
So far, so good.
Another time I had a rotten allergic type reaction to a combo, and was on holiday, and travelled with enough of an older combo that I switched back to that older one, immediately, rather than miss a day of doses, until I could contact a doc and get the new drugs I might need.
The sum is that in total I am quite sure I never had a day without some HAART in me.
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successfull HAART stamps the bug.
I would not dare try 'alternative' dosing until I have been UD for quite a while...
Eric
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Some people such as Shawn Decker, who blogs on Poz.com, takes his meds (Reyataz/Norvir/Truvada) one week on, one week off and is doing well.
LINK:
http://forums.poz.com/index.php?topic=32609.msg400837#msg400837
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After reading the FOTO study and some reviews of it, I gave it considerable thought for months before I decided to attempt this. Also, I communicated with others for advice as well as my health care team, which understandably could not endorse MY decision.
I felt comfortable taking this risk... but must stress that any adjustments or noncompliance to any treatment has risks!! I suggest being very honest about your abilities and gather information from many sources.
My anecdotal experiment began in January, 2010 when I began 5days ON/2days OFF; but I split the two days i.e I skip Sat and Wed dosings. Thus, I take meds SunMonTue, then ThuFri
Factors I considered in my decision:
Began HAART only on Atripla, with only one genetic mutation found and phenotypic sensitivity to all classes
Had been consistently adherent and UNdetectable <48 with Atripla for 2 1/2 yrs .
the long half-lifes of the components, esp Sustiva but also relative to Viread
have no known allergies to any treatments/drugs or serious adverse effects
have no issues being adherent or compliant to treatment,
am very proactive in my health care
My recent lab values are posted in my signature below. Next month will be my third labs since trying FOTO. Over time, I may consider taking consecutive two days off, if my VL remains undetectable or if other research support this. -YaKa
http://forums.poz.com/index.php?topic=33469.0
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My recent lab values are posted in my signature below. Next month will be my third labs since trying FOTO. Over time, I may consider taking consecutive two days off, if my VL remains undetectable or if other research support this. -YaKa
http://forums.poz.com/index.php?topic=33469.0
I'm assuming that where your signature says "VL 0" you mean undetectable, right?
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Yes, ElZorro ... 0=undectable .... did that to conserve character count in the sig. Thanks,
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Just updating that I continue with a modified FOTO [non-consecutive days] on Atripla. I remain undetectable <20 copies with steady, yet slow increases in CD4 & CD4% and unremarkable labs ... and yes, my health care providers are aware. -YaKa
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Thank you for the update; I think it's good to be aware of what others are doing "outside the box."
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It seems doctors should give more advice on these kinds of dosing regimens. This info could help people who are struggling to pay for their meds.
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It seems doctors should give more advice on these kinds of dosing regimens. This info could help people who are struggling to pay for their meds.
I think there would be too much of a malpractice risk for them to recommend anything other than what's officially approved.
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Keep in mind, too, its officially approved because that dose is what has been scientifically researched and proven effective.
Its a good question if the future holds further refinement in dosing to individualize treatment for more of the HIV+ population. But I highly doubt any institution - pharma or research - is going to put resources toward that.
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Keep in mind, too, its officially approved because that dose is what has been scientifically researched and proven effective.
Its a good question if the future holds further refinement in dosing to individualize treatment for more of the HIV+ population. But I highly doubt any institution - pharma or research - is going to put resources toward that.
If it meant saving money and less toxicity I think there would be interest. There are already ongoing studies that are trying duo-combos etc.
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I guess. But it seems the glamour in the research field is probably on finding NEW drugs and also long-acting treatments and the cure of course.
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I find this post most interesting. I am interested in trying to modify my regime. I take viramune and combivir twice a day. Do you notice changes in your body/body fat when you skip days or weeks? I started the meds in 2001 although I was diagnosed hiv+ in 1987. Once I started the viramune and combivir my belly grew. I want to see if it will return to "normal" if I skip doses.
If anyone has some advice or suggestions, please post.
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Hi,
Now that Viramune XR has been approved and more people are moving away from AZT (found in combivir), you may want to discuss
approved regimens that have a flatter release profile such as Viramune XR + Truvada (or Viramune XR + Epzicom) with your doctor, see what pans out and, then, may be, revisit the situation and explore 'unconventional' dosing.
If this is available to you, of course...
Cheers!
Eric
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There are several people I know who are doing this (un)structured treatment interruptions on their own. While FOTO is officially approved, I know people who are doing one day on, one day off, including me. I've yet to have my first VL and CD4 test on this dosing plan but I'm hopeful that it should be okay.
Shawn Decker's case in point is most intriguing, to take meds for one week and off for another, it kinda blows in the face of strict adherence theorists...
Nobody has yet been able to answer to Shawn's experiment with a strong argument for or against it.
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There are several people I know who are doing this (un)structured treatment interruptions on their own. While FOTO is officially approved, I know people who are doing one day on, one day off, including me. I've yet to have my first VL and CD4 test on this dosing plan but I'm hopeful that it should be okay.
Please keep us posted on the progress.
You are taking Atripla every other day?
I guess one potential issue with this is that it can get confusing?
Mon - Wed - Fri- Sun- Tues - Thurs - Sat - etc ?
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Yes, it is Atripla. I thought of that week confusion so found a better way to deal with that. I will start from the 1st day of the month and then just take every odd day until the end of the month. If at the end of the month, to compensate for the 30/31 day I'll take an extra dose if need be, then start again from the 1st of the month. I will mark on my calendar all the odd days so I don't forget what day it is.
I'm hoping the results will be promising, if not, then I'll reconsider taking every day again although that would not be my preferred choice.
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I'm hoping the results will be promising, if not, then I'll reconsider taking every day again although that would not be my preferred choice.
I have a few questions, if you don't mind.
1. Were you undetectable before you first started your on/off regimen? If so, how long were you UD for ie a few months, or a few years?
2. Does your doctor know you're doing this?
3. If you were previously undetectable, do you realise that if you come back with a VL higher than 1000 or so, you may need to have resistance testing done and possibly have to switch to a new combo?
4. Lastly, why are you doing this? If you were having side-effects, wouldn't it have been more prudent to try another combo?
Please don't take my questions as criticism - I'm genuinely curious.
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I'm hoping the results will be promising, if not, then I'll reconsider taking every day again although that would not be my preferred choice.
It might work out but if by any chance it doesn't it's not like you would then have the option of going back to taking Atripla daily. "Not working out" in this instance would likely mean becoming resistant, probably to Sustiva.
I do believe that in general most of us are taking more meds than we need (in terms of doses and also sometimes in terms of number of meds). I'm just not daring enough to play around with it on my own.
There are several studies ongoing looking at duo combos. Some look promising such as Isentress with (unboosted) Reyataz, which would be nuke-sparing.
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There are several people I know who are doing this (un)structured treatment interruptions on their own. While FOTO is officially approved, I know people who are doing one day on, one day off, including me. I've yet to have my first VL and CD4 test on this dosing plan but I'm hopeful that it should be okay.
Shawn Decker's case in point is most intriguing, to take meds for one week and off for another, it kinda blows in the face of strict adherence theorists...
Nobody has yet been able to answer to Shawn's experiment with a strong argument for or against it.
You say that "FOTO has been officially approved". Am I missing something? I thought it was officially not approved. Can someone provide clarrification on this.
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I would like Kuttakamina to answer Ann's questions.
And then I would like to see a follow up to such answers by the moderator or very knowledgeable members.
Otherwise, this thread seems to contain DANGEROUSLY incomplete information about medically unsupported adherence "strategies".....
OP - beware!
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Ann,
If you must know, first of all, the country where I live (or plan to shortly), the cost of ARV's is very high. In fact, Atripla (or Viraday) can run upto $100/month which maybe a person's whole month salary. While I may be able to afford this high price for a short time, I don't think I can do so indefinitely. So, yes, price of drugs is a big consideration.
And unfortunately, other drugs unlike in the US are not so commonly available and may be even more expensive, for eg. Truvada or Isentress.
Second, I have been UD for about one year now and am due for a test within a week or two. Before starting meds, my VL was 10,000 (whatever that means, too high or modestly high) but the CD4 was low in low triple digits. After being on the meds for about a year, VL was UD and CD4 of 325.
No, my doctor is dead against any form of interruption strategy so he does not know, he might even stop seeing me if I told him so.
And yes, I was also experiencing side-effects just being on this drug for about a year, starting from swollen feet, unexplained leg cramps, dizziness feeling just standing up straight, and a belly (which they say is normal now). And most recently, high alkaline phosphate levels which the doctor is attributing to a possible bone disease???
It may be easier said than done and condemn somebody for going against the grain but unless you have walked in their shoes, you may never know...
Lastly, I have yet to get a satisfactory answer on Shawn Decker's bold and unorthodox interruption strategy. Is the answer as simple as different strokes for different folks?
Thank you!
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If you must know, first of all, the country where I live (or plan to shortly), the cost of ARV's is very high. In fact, Atripla (or Viraday) can run upto $100/month which maybe a person's whole month salary. While I may be able to afford this high price for a short time, I don't think I can do so indefinitely. So, yes, price of drugs is a big consideration.
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No, my doctor is dead against any form of interruption strategy so he does not know, he might even stop seeing me if I told him so.
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It may be easier said than done and condemn somebody for going against the grain but unless you have walked in their shoes, you may never know...
Thanks for the further information. Its SO important people have the specifics of person's situation before they generalize into their own.
Nobody is condemning anyone.
In your situation, it rots to hell that the consideration is price of the HAART you have. Plus lack of access to HAART that may give you less side effects.
I hope you get good results.
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You say that "FOTO has been officially approved". Am I missing something? I thought it was officially not approved. Can someone provide clarrification on this.
I don't know whether it was officially approved or not, but it appears to have been successful:
http://www.poz.com/articles/hiv_efavirenz_intermittent_761_16959.shtml
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I don't know whether it was officially approved or not, but it appears to have been successful:
http://www.poz.com/articles/hiv_efavirenz_intermittent_761_16959.shtml
I'm not sure why this hasn't garnered more attention but the most interesting thing is all of these people were treatment naive. By the end of it they were all UD and had not developed resistance. I would like to see a longer study on this but I would be comfortable going onto FOTO right now.
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I'm not sure why this hasn't garnered more attention but the most interesting thing is all of these people were treatment naive. By the end of it they were all UD and had not developed resistance. I would like to see a longer study on this but I would be comfortable going onto FOTO right now.
Hellraiser, let me ask you...how long of a study is good enough in the eyes of these doctors. If one year is not good, then why would a three year or five year study be enough? I don't get it. My doctor had not even heard of FOTO and I was not surprised at all, it seems his knowledge outside of the textbook is very limited.
Nor had he heard of GcMAF and Dr. Yamamoto ever. Oh well...
Nestor, your signature indicates that you are doing rather well without meds and I hope it stays that way for you. Good luck!
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It amazes me that people search and put their hopes in unproven and untested remedies. If Dr Yamamodos miracle cancer and hiv cure actually worked dont you think he would publish his finings in a peer reviewed journal. Maybe your doctor doesnt know who he is because he is a quak!
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Hellraiser, let me ask you...how long of a study is good enough in the eyes of these doctors. If one year is not good, then why would a three year or five year study be enough? I don't get it. My doctor had not even heard of FOTO and I was not surprised at all, it seems his knowledge outside of the textbook is very limited.
Nor had he heard of GcMAF and Dr. Yamamoto ever. Oh well...
Nestor, your signature indicates that you are doing rather well without meds and I hope it stays that way for you. Good luck!
I actually meant a larger study. That study only had 60 people in it.
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Brand new to all of this, including the meds, but just wanted to add my two cents....
I applaud anyone willing to take a few chances for the possibility of a better outcome. I don't look down on those that won't, and I don't encourage everyone to take chances. Long and short of it --- I don't want to be a 'slave' to medication for the rest of my life either. I've been positive for 12 years now and just started meds two weeks ago. I will be one of the people trying to be off a day or a week allowing my body to work on my behalf. It would be dangerous or it could be great, but we won't know til we do. Thank you all so much for all the information you've reported to date helping us 'newbies.' But, please don't shy away, nor discourage people from following a path that they have decided may be right for themselves. Yes, I agree doctors may have to stick to strict guidelines for what they 'recommend' but it doesn't mean that everything has to be black and white.
I will be reading and commenting as often as possible and I SO look forward to hearing that even at X number of days per week, the levels in your body are still working for you and the meds are doing what they need to. No one wants to allow these chemicals to completely take over things our own bodies might possibly learn to work with. Again, I'm not saying 'throw all caution to the wind' but some of us have to try things that everyone advises against for our own well being and possibly the well being of many others reading this infomation.
Thank you so much for all you've taught me to date and thank you in advance for everything I'll learn here...
I am COMPLETELY on your side and look forward to reading updates about your 'trials' my friend!
Steve
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welcome to the forums!
allowing my body to work on my behalf.
...our own bodies might possibly learn to work with.
good luck; but I would like to point out that this idea is just bad science. If our bodies were able to deal with this retrovirus in the first place, we wouldn't need meds to interrupt it in so many points of it's adaptable life cycle.
the object of something like FOTO is not that your body does anything at all; but that the prescribed dosage might not be optimal for you and it might be possible to lower the dosage. It had nothing to do with your body adapting and dealing with HIV at all.
I would suggest that you do some more research about HIV (see the lessons from this site (http://www.aidsmeds.com/articles/Introduction_4702.shtml)) and speak with your doctor about your plan to take medications not according to the prescription.
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I definitely wouldn't try this when you're first going on medication and trying to get to undetectable, talk about foolish.
"slave to medication"? wtf does that mean anyway? If you take medication every other day you're still a slave. Seriously, the rationales people come up with are simply odd.
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Boys, boys, I didn't say this was something I would try immediately --- but, down the road, yes, I will try to pull back a little.
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I've been positive for 12 years now and just started meds two weeks ago. I will be one of the people trying to be off a day or a week allowing my body to work on my behalf.
whether you wait two more weeks or two year to begin sporadically taking your medications, your body/immune system will never "work on your behalf" or "learn to work" against HIV, that's just not the science of how HIV and the meds affect our bodies.
I didn't say this was something I would try immediately ... I will try to pull back a little.
I spoke up as I did because it seemed very odd for you, as a person only on meds for a few weeks, to jump the gun and claim that at some point in the future you would certainly be taking your medications on an alternative treatment regimen than the recommended treatment schedule. I would suggest that you still need to learn a bit more about the science of all this and probably not talk about alternative strategies until you see how the medications actually work for you. Look into Therapeutic drug monitoring (http://www.labtestsonline.org/understanding/analytes/therapeutic_drug/glance.html) if you are serious about knowing whether a schedule like FOTO actually would work for you; and study up about how "pulling back a little" can lead to drug resistance (http://www.aidsmeds.com/articles/Resistance_4738.shtml).
Until you see how long it takes to get to undetectable (or how many med changes it might take to reach UD) and how many side effects you have to deal with (which might prompt further med changes), I would suggest that you should take the meds as prescribed and not worry about the silliness of being a "slave to medication" - especially to meds like antiretrovirals which are the only things that hold terminal HIV at bay.
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Hello fellow posters,
I'm writing to update as I had promised...make of it what you will. While I have not got my report in my hands yet as I'm traveling at the moment, the nurse on the phone gave me the following information.
After several weeks of one day on, one day off, my latest (or last) test results are as follows. A slight increase in CD4 from 325 to 339 and a continuted UD viral load. For reference, the test before the last was in mid-April when I was taking one-a-day Atripla. Sometime in late May, I started the one day on, one day off, and the latest tests were done around the last week of June.
My doctor does not know about my strategy and a mention of it several months ago to him was met with strong disapproval and a veiled threat that he would not see his patients who try any such strategy.
I will continue to adhere to this therapy and monitor my CD4 and VL numbers.
Brand new to all of this, including the meds, but just wanted to add my two cents....
I applaud anyone willing to take a few chances for the possibility of a better outcome. I don't look down on those that won't, and I don't encourage everyone to take chances. Long and short of it --- I don't want to be a 'slave' to medication for the rest of my life either. I've been positive for 12 years now and just started meds two weeks ago. I will be one of the people trying to be off a day or a week allowing my body to work on my behalf. It would be dangerous or it could be great, but we won't know til we do. Thank you all so much for all the information you've reported to date helping us 'newbies.' But, please don't shy away, nor discourage people from following a path that they have decided may be right for themselves. Yes, I agree doctors may have to stick to strict guidelines for what they 'recommend' but it doesn't mean that everything has to be black and white.
I will be reading and commenting as often as possible and I SO look forward to hearing that even at X number of days per week, the levels in your body are still working for you and the meds are doing what they need to. No one wants to allow these chemicals to completely take over things our own bodies might possibly learn to work with. Again, I'm not saying 'throw all caution to the wind' but some of us have to try things that everyone advises against for our own well being and possibly the well being of many others reading this infomation.
Thank you so much for all you've taught me to date and thank you in advance for everything I'll learn here...
I am COMPLETELY on your side and look forward to reading updates about your 'trials' my friend!
Steve
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After several weeks of one day on, one day off, my latest (or last) test results are as follows. A slight increase in CD4 from 325 to 339 and a continuted UD viral load. For reference, the test before the last was in mid-April when I was taking one-a-day Atripla. Sometime in late May, I started the one day on, one day off, and the latest tests were done around the last week of June.
Curious where you live and why you are offered such frequent testing.
I would be willing to try reduced dosing schemes if I could have both doctors approval (highly doubtful....) and access to bi-monthly testing for awhile. The latter would depend on the doctor mandating it and the insurance accepting, highly doubtful, again.
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Glad to see that my original post continues to gain interest. Thank you all for your updates and personal stories. Please continue to update us.
here is my update:
after 1.5 years taking Atripla everyday (since Dec 2008), I switched to a less adherent strategy, i.e missing about 2 doses during the week. Sometimes consecutively, but sometimes a few days apart. I have used this approach for over a year.
I have never once seen a detectable viral load. Been undetactable since 4 weeks after starting meds in 2008 and remained that way throughout.
My doctor also frowned upon this approach, and did not advise it. but i did it anyway.
I believe there is sufficient meds in my blood stream to keep me undetactable and am hoping it stays this way.
I feel if I can reduce the toxicities by 20% (2 less pills) per week, then i can avoid long term damage and side effects to my body.
I have also had a drug monitoring test to check on the levels of Sustiva in my blood stream. Before the test, I took my meds everyday for 2 weeks, so as not to distort the results.
The results showed I had the Normal level in my blood.
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As far as I know if taking the pills for two weeks before the test would give you a 'normal' level.
Next time they do a drug level test it might be wise to do the skipped dose test.
I wish I could take one pill a day.
I do not understand the 20% toxic thing either is this Scientific research ? ( and yes they are doing it)
Why roll the dice ? you may regret when you have to take 12 pills a day.
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I have also had a drug monitoring test to check on the levels of Sustiva in my blood stream. Before the test, I took my meds everyday for 2 weeks, so as not to distort the results.
The results showed I had the Normal level in my blood.
Yeah ditto! What was the point of the drug level test!? It would have no bearing you your new dosing scheme if you took the drug level test when you were dosing everyday.
And ditto on the toxicities. I mean I guess thats one motivation behind wanting to reduce and it makes common sense but its hardly science based reasoning.
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My unconventional treatment regime (which I've written about in another thread) is taking Darunavir and Norvir, but not Truvada, which is standard with the other drugs in this combination. I've had two viral loads since I've been doing this and they have both been undetectable. The next one will be in the Autumn.
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One guy is even lying to his Dr about the skipping Meds.
If you cannot tell the truth to your ID DR something is really wrong.
What is the difference of taking 3 4 5 6 12 pills a day ?
Research has and is being done to see the level of drug needed why not wait until the facts are in place.
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Ive recently started a volunteer program that does outreach to homeless youth, a few times a week I need to be out in the middle of the night and dont end up going to sleep until around 7 in the morning. This has caused my dosing schedule to become completely F'ed up. I have never missed a dose (on Atripla) but some days I am delayed up to 7 hours (say I take it at midnight one night then 7am the next). My doctor wasnt thrilled about my delay I cannot imagine what he would say If I told him I was intentionally skipping doses. I think he would fire me as a patient. Besides the stress of it all.
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Missing 'about' one or two doses a week !
If you cannot cope with your regimen then I would talk to your ID Doctor.
It is curious that they would order a drug level test without seeing a rise in Viral load as I am sure these tests are not cheap anywhere in the world.
My own tests are only being done on a research basis.
The people I know that messed around with their meds are Dead.
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What I don't get is...it seems people are intentionally reducing the amount of meds they are taking because they are concerned about side effects. Yet, it doesnt seem like anyone who is actually reducing their meds are exeriencing any significant side effects. The fact you are more worried about some "potential" side effects instead of a universally terminal disease is just......stupid.
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Some of the stuff posted doesn't pass the smell test.
It would be like saying I will only smoke 20 smokes a day and not smoke weekends thus reducing the toxic level by 20 %.
If a person wants to rely on voodoo science its up to them.
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What I don't get is...it seems people are intentionally reducing the amount of meds they are taking because they are concerned about side effects. Yet, it doesnt seem like anyone who is actually reducing their meds are exeriencing any significant side effects. The fact you are more worried about some "potential" side effects instead of a universally terminal disease is just......stupid.
I was experiencing debilitating fatigue that severely hindered my ability to get on with my life and within days of stopping Truvada this lifted and I started to feel much more like my old self again. Unfortunately, the doctor I was assigned to at the time had made a point of saying firmly, that the last thing he wanted to do was change my regime, so I was left in a difficult situation, and had to take matters into my own hands. I'm now seeing a different doctor and he knows what I've done and is happy for us to move forward on that basis. I feel relieved by this fact, but not everyone will be as fortunate as me.
In all honesty, I think the once a day Atripla thing is a bit overplayed and my attitude was that I wasn't hugely concerned if I had to take 1, 5 or 8 pills a day, but I certainly was concerned about the never ending tiredness, and it was that that made me consider reducing the dose and not before my doctor had completely ruled out any regime change. Fine. But he, nor anyone else is not the one having to live with such a side effect to the point where I found it difficult to get out of bed and stay awake for more that a few hours at a time.
In an ideal world, patients and doctors would always have good relationships where everything can be openly discussed, but sadly that isn't always the case, and we can see that on these forums all the time, not just in relation to anti HIV drugs.
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Zohar, I guess I am guilty of making my comment using too broad of a brush. I hope your fatigue issues get resolved. However, if you read through this thread and others, many posts are from people who are trying to reduce or are thinking about reducing their meds because they are trying to prevent some future side effect that they may or may not get. There is a saying for that (I cant think of it off the top of my head but its something about shooting your nose spite your face???). Its foolish, especially when the underlying disease is terminal. I could understand if it was some other benign disease like.....psoriasis.....but HIV?? Seems like playing with fire. Maybe I'm just being naieve. Wouldnt be the first time.
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Zohar, I guess I am guilty of making my comment using too broad of a brush. I hope your fatigue issues get resolved. However, if you read through this thread and others, many posts are from people who are trying to reduce or are thinking about reducing their meds because they are trying to prevent some future side effect that they may or may not get. There is a saying for that (I cant think of it off the top of my head but its something about shooting your nose spite your face???). Its foolish, especially when the underlying disease is terminal. I could understand if it was some other benign disease like.....psoriasis.....but HIV?? Seems like playing with fire. Maybe I'm just being naieve. Wouldnt be the first time.
''Cutting off your nose to spite your face.''
Let's be honest, there are many things that people do that are considered foolhardy, be that drinking, smoking, taking street drugs, engaging in unprotected sex etc. Who doesn't know how risky, dangerous and potentially deadly these activities are?
I don't see it as my place to tell other people how to live their lives and scolding adults is ineffective at best and counterproductive at worst. I think it's important to remember that we're all individuals of free will.
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I don't think anyone is scolding anyone. When you post on an open internet message board you have to expect there will be people who don't agree. Since this board is also a place where newly diagnpsed (or not so newly diagnosed) people come for information and to learn, to let missinformation go by under the guise of "live and let live" isnt doing anyone a favor.
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I don't think anyone is scolding anyone. When you post on an open internet message board you have to expect there will be people who don't agree. Since this board is also a place where newly diagnpsed (or not so newly diagnosed) people come for information and to learn, to let missinformation go by under the guise of "live and let live" isnt doing anyone a favor.
Quite so Bugsy. :)
MtD
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I don't think anyone is scolding anyone. When you post on an open internet message board you have to expect there will be people who don't agree. Since this board is also a place where newly diagnpsed (or not so newly diagnosed) people come for information and to learn, to let missinformation go by under the guise of "live and let live" isnt doing anyone a favor.
I would disagree and I think there has been some scolding taking place here, especially in some of the later posts; the words 'stupid', 'foolhardy' 'voodoo science' have all been thrown around in a way which reads as belittling. This board is as much about allowing people to share experiences. They may be experiences you don't agree with, but that doesn't mean they shouldn't be discussed.
It would be a far greater concern if people were actively advocating home experiments with their treatments, but that isn't what is happening here. It's also worth bearing in mind that as long as people are being monitored, then unsuppressed viral loads, if they occur, should be detected which would then be addressed by the doctor.
My own experience has shown that sometimes a particular doctor doesn't always know best and the quality of my life has improved immeasurably since taking matters into my own hands - a decision which was later supported by a highly experienced HIV consultant. The point here is that these circumstances were specific to me and, convenient though it would be, a 'one size fits all' approach doesn't always yield the best outcome.
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I would disagree and I think there has been some scolding taking place here, especially in some of the later posts; the words 'stupid', 'foolhardy' 'voodoo science' have all been thrown around in a way which reads as belittling. This board is as much about allowing people to share experiences. They may be experiences you don't agree with, but that doesn't mean they shouldn't be discussed.
It would be a far greater concern if people were actively advocating home experiments with their treatments, but that isn't what is happening here. It's also worth bearing in mind that as long as people are being monitored, then unsuppressed viral loads, if they occur, should be detected which would then be addressed by the doctor.
My own experience has shown that sometimes a particular doctor doesn't always know best and the quality of my life has improved immeasurably since taking matters into my own hands - a decision which was later supported by a highly experienced HIV consultant. The point here is that these circumstances were specific to me and, convenient though it would be, a 'one size fits all' approach doesn't always yield the best outcome.
Varying slightly from the strict letter of the medicine bottle label is not always a problem. My combination is meant to be twice a day, but I'm far too scatter brained to manage that so I take all my pills all at once at night time.
My prescriber says this is ok. And therein lies the point, if folks need to test the boundaries a bit well OK. But make sure you discuss it with your doctor first. If your doctor says you shouldn't well you're still free to chart your own course but don't be surprised if it all goes horribly wrong.
Moreover, such intrepid pioneers shouldn't come snivelling to us either when their combos fail because they knew better than their doctor(s). A sympathetic response will likely not be forthcoming.
You also miss the point of an internet forum, a point (suprisingly) which Bugsy gets. It's about a free and robust exchange of views. You've been here for all of 136 posts and a little more than a year and you seem to think you know what is the point of these forums.
Clearly, you do not.
You cannot on the one hand spout off about people being able to discuss their experiences but on the other bitch about the use of words you don't care for. Well, you can but you won't be taken seriously when you do.
The reality is that some of the views in this thread are stupid, foolhardy and rendolent of voodoo science.
So harden up, Princess. :)
MtD
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''Moreover, such intrepid pioneers shouldn't come snivelling to us either when their combos fail because
they knew better than their doctor(s). A sympathetic response will likely not be forthcoming.''
Please correct me if I'm wrong but I haven't seen anyone come 'snivelling' in this thread looking for sympathy because their combo has failed. And yet some posters here are acting as if that has already happened and lacing their responses with what they consider to be the requisite level of hostility, which is both uncalled for (re-read the opening post for guidance) and unwarranted.
I don't post too frequently on the forums but I have been following them for several years, which amply qualifies me to hold a view about their purpose, and that shouldn't be to patronise or attack.
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Other words like ' My Dr doesn't know ', ' I believe' , and a study of 60 patients is somehow a proof that this self experiment is working.
I wonder how many experiments were conducted to find the overall correct dose for most people ?
1.5 years does not seem like a very long time to be on a combo and great it is working well.
What is the benefit of skipping a dose ?
Suppose it does go wrong and cost is a factor ? $2500 a month vs $50,000 if the drug becomes resistance.
I am sorry if I used the word Voodoo science but misleading your DR, skipping doses, saying it is 20% less toxic and basing your theory on a 60 patient study is Just that.
The results of certain drug blood level tests can take up to a month it is a scientific fact that HIV replicates at an amazing rate what is to be gained by this risk ?
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the words 'stupid', 'foolhardy' 'voodoo science' have all been thrown around
These words are referring to behaviours. I would want someone to tell me if I was doing something that was stupid and quite possibly detrimental. However, if they told me that I was an asshole (and I am sometimes, who isn't?) along with it, then and only then would I take offence. Please don't try to take people's well-meaning posts and make them into something they're not.
''Moreover, such intrepid pioneers shouldn't come snivelling to us either when their combos fail because
they knew better than their doctor(s). A sympathetic response will likely not be forthcoming.''
Please correct me if I'm wrong but I haven't seen anyone come 'snivelling' in this thread looking for sympathy because their combo has failed. And yet some posters here are acting as if that has already happened and lacing their responses with what they consider to be the requisite level of hostility, which is both uncalled for (re-read the opening post for guidance) and unwarranted.
Nobody was "acting as if that has already happened". He was talking about the future. Again, please don't try to take people's well-meaning posts and make them into something they're not.
My bf started taking Sustiva and Combivir in 2001. He would wake the whole house (he runs a small boarding house with up to four semi-permanent residents) screaming with the nightmares Sustiva gave him. His behaviour became increasingly erratic.
His doctor used Therapeutic Drug Monitoring (TDM) on him, where they measured the levels of Sustiva in his blood stream. It was concluded that his body processed Sustiva too slowly and he therefore had very high levels. They dropped his dose from the standard 600mgs to 400mgs.
The nightmares and erratic behaviour continued. This is back when Sustiva was considered the "holy grail" of hiv meds, so rather than switch him out for something else, they did more TDM. The levels of Sustiva were still far too high. They dropped him down to 200mgs and the nightmares finally stopped. His behaviour is still erratic, but hey, maybe that's just him. ;) ;D
The point is, not everyone's bodies process some of these drugs the same as everyone else. While there are alternatives like switching meds or lowering doses, it should always be done in conjunction with a doctor. If your doctor refuses to help, rather than "taking matters into your own hands" as one member here has done, FIND ANOTHER DOCTOR. Hiv drug resistance is nothing to mess around with - just ask some of our LTS who where facing death until another drug class came out.
BTW, my bf is still on 200mgs of Sustiva, once daily. His VL has remained UD since about three or four months into initiating treatment in 2001. When Truvada came out, they switched him to that instead of the Combivir (to get him off AZT). He initially took the Truvada at night with the Sustiva like he did with the Combivir, but he found he was waking up feeling very groggy and unfit to drive - something that never happened before, even with the super-high levels of Sustiva. He switched the Truvada to an AM dose and hasn't had a problem since. He did this on advice from his doctor.
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Since dose finding studies are done on a very few people, and alarms about resistance mainly comes from days of sequential monotherapy, it is likely, more than likely, a fair proportion will needs less than the full regulation 3 drugs from 2 classes after the first few months of treatment. Alas not more than 8/10 people as present data stands, if it is 8/10 people (studies have been small and generally excluded people with existing resistance) and not with NNRTIs or integrase inhibitors (so the right boosted PI basically).
Some people will be underdosed even on the fully monty (there's a very good paper on this and efavirenz and also on boosted atazanavir). Some will be overdosed even on low levels of particular drugs (as per Ann's post). It's a genetic thing.
Boosted darunavir as maintenance therapy seems fine to me with careful initial monitoring, as does FOTO on efavirenz for a fair proportion of people. But you need a back up. It would be terrible to fuck up your last strong regimen.
Unfortunately, FOTO is not less toxicity because the reason it works is the drugs stay at a steady state in your body for a long time, enough to cover a weekend, after a while of taking them.*
PIVOT is an important study on boosted PI maintenance therapy. I was involved in the design consultations, it's a very community-driven study, a real-world study, and has cost benefits for our socialised medicine NHS (three cheers) if it holds true. I would be on it but for the lumbar punctures. I note enrollment was kinda slow, but it got there in the end.
Next year I am going to discuss dropping 1 NRTI, tenofovir, from my combination. This will put me on boosted darunavir + FTC. But note, this is after several years of suppressed viral load, and I'll be back on the tenofovir if there's even a hint of a rise in viral load.
- matt
* this is nearly right, it's a bit more complicated
Edited for spelling
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I am highly tempted to get out the pill cutter and go on once a day Prezista, starting about a month before a set of labs. I don't mind twice a day dosing, or the need to have breakfast with the pills -- it is the need to always make sure I'm eating something with the evening pills that is inconvenient -- about once a month or so I just wind up taking the evening dose dry, because I forgot to take it with dinner, or I had a late lunch or...
I really like the reduced norvir dosing that would result too-- since it seems to be responsible for other problems.
I talked to the doctor about it last year, but she was worried I might have some low-level resistance from when I had a string of low but repeated viral loads on Kaletra. Perhaps I'll see what she thinks of this strategy at my appointment coming up (but she tends to rein me in -- probably not a bad thing, but still...)
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Does one need a four course meal when taking duranavir ?
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Does one need a four course meal when taking duranavir ?
No, of course not. The labeling says (clearly) "Take With Food" not "Take With Meal".
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Some of you would have been a joy back in the days when you had to take 3 doses of meds, 2 with full meals and 1 on an empty stomach.
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Dear Matt,
I must say for myself I have become worried about the drug resistance I have.
I am hope that the next VL test and drug level test will be OK.
I have been 99% compliant with meds so I don't understand fully why they are not working.
I guess that is why I do not understand people being pissed with once day dosing .
with my meds now HIV and crazy meds I am on 16 pills a day one pill a day would be fantastic !!!
Or having to have a snack with a pill hey enjoy eating I know I do ;)
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Dear Miss P,
I was Just being Facetious !
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Some of you would have been a joy back in the days when you had to take 3 doses of meds, 2 with full meals and 1 on an empty stomach.
It's all relative, I guess. ;)
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Relative to what, pray tell? Thinking you can get AIDS without the slightest of inconvenience?
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Relative to what, pray tell? Thinking you can get AIDS without the slightest of inconvenience?
I'd prefer to optimize my regimen.
I can always fulfill any remaining quota of inconvenience by reading snarky posts.
Ah well, so much for revealing my deepest darkest meds fantasies here, MtD has posted a scientific study and I must swot up before the quiz.
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Why get a pill cutter ? Is it that much bother to make a sandwich or snack ? or go out and get a donut?
There is nothing snarky about the comment. View it as your new normal.
Maybe think about taking your pill with breakfast and Dinner and cut down during the day ?
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Ah well, so much for revealing my deepest darkest meds fantasies here, MtD has posted a scientific study and I must swot up before the quiz.
Quite so. Penis Size 403 is a core subject and that quiz will constitute 25% of your final mark.
MtD
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Relative to what, pray tell? Thinking you can get AIDS without the slightest of inconvenience?
Er, no. Not quite sure how you came to that conclusion. ::)
I meant it's relative to one's own experiences of HIV drugs.
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I have a question about this FOTO study, maybe somebody has an answer.
Supposing I take my meds only 5 days a week and drop the dose at Friday and Saturday: How many latent viruses can "wake up" at one day? I know there are some billions infected cells in the body, but when do they start to reactivate after quitting meds?
My VL is under 50 for 1,5 years with Celsentri 150mg/ Prezista 600mg once a day
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I have a question about this FOTO study, maybe somebody has an answer.
Supposing I take my meds only 5 days a week and drop the dose at Friday and Saturday: How many latent viruses can "wake up" at one day? I know there are some billions infected cells in the body, but when do they start to reactivate after quitting meds?
My VL is under 50 for 1,5 years with Celsentri 150mg/ Prezista 600mg once a day
The FOTO study was done specifically with Atripla. When you stop meds they stay in your body a certain amount of time, based on their "half-life":
The duration of action of a drug is known as its half life. This is the period of time required for the concentration or amount of drug in the body to be reduced by one-half. We usually consider the half life of a drug in relation to the amount of the drug in plasma. A drug’s plasma half-life depends on how quickly the drug is eliminated from the plasma. A drug molecule that leaves plasma may have any of several fates. It can be eliminated from the body, or it can be translocated to another body fluid compartment such as the intracellular fluid or it can be destroyed in the blood. The removal of a drug from the plasma is known as clearance and the distribution of the drug in the various body tissues is known as the volume of distribution. Both of these pharmacokinetic parameters are important in determining the half life of a drug.
Different drugs have different half-lifes. The virus will continue to be suppressed as long as there is enough of a concentration of drug in one's system.
LINK:
http://sonet.nottingham.ac.uk/rlos/bioproc/halflife/index.html
With FOTO it was determined that skipping two days of Atripla (for individuals who had been undetectable at least 6 months prior) was not harmful.
There are other factors that affect a drug's half-life, such as one's own metabolism, etc.
As far as the meds you are taking there have not been, to my knowledge, any studies done that were similar to FOTO.
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Celsentri 150mg/ Prezista 600mg once a day
Plus some Norvir I hope? Like the previous poster said, FOTO is only for efavirenz based combos like Atripla. It won't work on your combo.
- matt
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Thank You Inchlingblue and Newt for the info. You are right, FOTO makes no sense with my combo (Celsentri, Prezista and norvir).
Sustiva has a half life of 40-50 hours; Celsentri and Prezista only 13-15 hours. So I dont wanna risk mutations.
thanks
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Will be my last update to this post to say that I continue to sustain an undetectable VL <20 and will be staying with the modified FOTO in my adherence. -YaKa
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Just saw this post and had an interesting conversation with my Doctor about FOTO. He believes the outcomes in the study are valid and patients could possibly reduce their pill burden to 5 days a week if undetectable , especially with the long half life of the effavirenz component in Atripla.
He does not recommend it though because there would be little room for error.
He did tell me he has an older patient with kidney problems who takes his Atripla only 6 days a week. He feels that 1 day holiday lessens the tenofovir levels just a little that makes atripla just that much more forgiving.
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Just saw this post and had an interesting conversation with my Doctor about FOTO. He believes the outcomes in the study are valid and patients could possibly reduce their pill burden to 5 days a week if undetectable , especially with the long half life of the effavirenz component in Atripla.
He does not recommend it though because there would be little room for error.
He did tell me he has an older patient with kidney problems who takes his Atripla only 6 days a week. He feels that 1 day holiday lessens the tenofovir levels just a little that makes atripla just that much more forgiving.
I also only take it 6 days a week, I've been doing this for almost 5 months now. When I get my blood results back in soon we'll see if I'm still UD
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People do this for different reasons?
Maybe financial?
Maybe psychological - just want some semblance of "control" over a obligatory regimen
Intellectual - believe that the drugs are poison or potentially poisonous to the body and want to limit potential damage? have cns side effects and hope to reduce them through reduced drug levels?
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I also only take it 6 days a week, I've been doing this for almost 5 months now. When I get my blood results back in soon we'll see if I'm still UD
You know, there are far more fun ways to court death than failing to take your Bactrim while skipping doses of your Atripla.
You could take up motorcycle acrobatics or set up meetings with anonymous tricks on fetlife.
...just sayin
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People do this for different reasons?
there are two other schools of thought on this
1) current dosage guidelines may actually be too much for some individuals. Everyone is different with different body weights and different rates of metabolism. In the early days, they OD'ed us with AZT, so it's quite possible (without any theraputic monitoring) that many people are still being "overdosed" on medications today
2) once undetectable is reached and held for a period of time, it may take less levels of medication to maintain UD.
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emphasis on "may"
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Yeah OK I get that there must be other considerations.
This thread is informative.
I wish we could all have limousine luxury individually precise treatments. In my own experience, I'm already 90% thrilled that treatment was so good for everyone, by the time I got HIV (what was that, now, 2008?). And so far, the one size fits all has been ok with me. I was freaky on sustiva, allergic to two others, but the current one is quite smooth sailing. They all worked well on the viral loads, so I count my blessings.
I really doubt I could push for all sorts of blood level monitoring. I'm sure what I get is a function of a certain amount of a country's resources being applied generally to the overall population's benefit.
I guess you only get really close monitoring when there are problems with the body, organs, etc., or when you lose viral suspression, or for LTS who have been through so much.
Since all my labs are fine so far, I just do what the doctor tells me, take what the doctor tells me to take, and that's that.
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I guess you only get really close monitoring when there are problems with the body, organs, etc., or when you lose viral suspression, or for LTS who have been through so much.
or you can get better monitoring when you join into a study, like the FOTO study, and have your labs monitored as part of research. ;) Often free meds and more agressive monitoring and therapy is a perk of being part of certain studies.
I'm sure they did this kind of study with Atripla as there are so many individuals using that medication. Whether similar studies will be done to cover other regimens is highly debateable.
Of course, until there is study on your specific regimen, one could always pay for their own theraputic monitoring. ::) :D
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You know, there are far more fun ways to court death than failing to take your Bactrim while skipping doses of your Atripla.
You could take up motorcycle acrobatics or set up meetings with anonymous tricks on fetlife.
...just sayin
I'm not living dangerously, comb through my posting history and you can see I'm pretty interested in the FOTO study. I'm not even doing the 2 days off I'm only doing one, as for the bactrim it's been 2.5 years and I still haven't caught PCP, in the meantime I've spared myself 2.5 years of being on an antibiotic which to me is a success at the end of the day. I appreciate the concern and I DO trust the doctors and the medicine, but I just don't want to do this one thing. I'm not going anywhere any time soon.
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as for the bactrim it's been 2.5 years and I still haven't caught PCP, in the meantime I've spared myself 2.5 years of being on an antibiotic which to me is a success at the end of the day.
Gee, Trey. That's like the logic someone uses not to employ HAART until they get an O.I.
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Gee, Trey. That's like the logic someone uses not to employ HAART until they get an O.I.
If someone has no signs (declining CD4 or increasing viral load) of disease progression they don't use HAART, as an example I'll use Ann. I definitely feel that at one point I was in the danger zone for picking up an OI but I feel that window has passed and I am as reasonably healthy as I can be with my numbers being low. Frankly the antibiotics (specifically azithromycin) were making my life incredibly miserable.
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If someone has no signs (declining CD4 or increasing viral load) of disease progression they don't use HAART, as an example I'll use Ann. I definitely feel that at one point I was in the danger zone for picking up an OI but I feel that window has passed and I am as reasonably healthy as I can be with my numbers being low. Frankly the antibiotics (specifically azithromycin) were making my life incredibly miserable.
I don't find that too clever a decision, especially for someone who is otherwise fairly educated. IIRC you were still under 200 CD4 the last time that you mentioned your numbers. I may be wrong in that respect.
It concerns me that you do this, but hopefully there will be no repercussions to this choice that you have made.
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If someone has no signs (declining CD4 or increasing viral load) of disease progression they don't use HAART, as an example I'll use Ann. I definitely feel that at one point I was in the danger zone for picking up an OI but I feel that window has passed and I am as reasonably healthy as I can be with my numbers being low. Frankly the antibiotics (specifically azithromycin) were making my life incredibly miserable.
Because of a potential allergy I didn't take azithromycin either. But that didn't stop me from taking Bactrim so that I wouldn't get fucked over by pcp again.
Generally azithromycin is needed at lower tcell counts than bactrim or other pcp prophylaxis -- you might well be beyond the point where you need azithromycin but still be vulnerable to pneumonia.
Sorry to get on your case, but your argument is one for changing drugs not for stopping them.