Taking a lower dosage of your meds then recommended?

[pozatlguy]

I have to make a confession I'm doing it and was wondering if anyone else out there has tried it or was currently doing it as well?

Here is my story..........Over two years ago I went to an AIDS survival seminar and got the idea from talking to another attendee.  This had never entered my mind beforehand and I had never known anyone who had done it.  The premise of the idea was that the HIV meds were too potent and the current recommended dosages were over medicating most people, thus doing more damage to our bodies then really needed to occur.   

I was open to the idea mainly because I've had issues with lipo (legs mainly) and at the time of this seminar I was experiencing mild neuropathy in my arms.  The thought was almost instantly something I wanted to try.  My thought was the drugs were causing my triglycerides and Cholesterol to be way above normal and also the meds were known to cause the pain in my nerves in my arms.   

I tried to bring up the subject with my doctor but he right away dismissed it.  His thought was that the lower dosage would allow the virus to possibly mutate and then there would be bigger problems if that were to occur.  So I drop the conversation with him.  He has never been open about doing things differently other then by the book so if things were working well why change was his thought.  I've basically have had my VL < 50 or close to it for the last 5 years and my CD4 was always above 500 or better during that time as well.  I’ve been HIV poz for 17 years now and still qualified as having AIDS.

I felt so right about trying this that I took it upon myself to try it without his acceptance.  I was taking epivr, ziagen and viramune twice a day (6 pills total a day - 3 in the morning and 3 at night).  I decided that I would cut it in half and take one pill of each once a day.  I would cut each in half and take half a pill of each in the morning and the repeat at night.  So in reality I went down to a total of 3 pills a day.  I started that dosage for a year that was two years ago now. 

These are my results for that year. 2004-2005

VL      CD4      
 1207      643   
 294       537
 85      580
 101      612
<50      679

I noticed that my neuropathy went completely away almost right away. 

The start of the next year after that I decided to once again cut my dosage in half this time only taking a half a pill of each med in the morning and not taking the dosage at night. 

Results: 2005 - 2006

VL      CD4
<50      622
<50      664
<50      656
<50      656 (yep the same as the time before)   
<50      739   

Triglycerides I can say really haven’t changed much over this time.   Cholesterol has been barely under 200 for the past two years where before they were always above that amount, so that has been a slight improvement.


Overall I can say that I have felt pretty good, good energy and working out at the gym pretty regularly which was my normal routine before I attempted this as well.  Of course I feel bad that every time I go in to an appointment to see my doctor, I have to lie about this but I think it was the right thing for me and I still do.  The only negative thing that has occurred to me has been that I noticed that I break out on my scalp with itchy bumps.  That started happening around the time I started the lower dosages and it has continued pretty much with different levels of severity so I’m saying that it is related thou it might not be, who knows.

Anyway I wanted to share this with the broad here because there is really no one I can talk to about having done this and I was wondering if anyone else out there has had any experience of doing the same thing. 

Regards,

-F     

[HIVworker]

Hey F.

Firstly, I am glad to hear your side effects have decreased. I just wanted to add food for thought for anyone wanting to try what you are doing. Drugs are tested in clinical trials at several doses. The final dose that is fixed is based on what works for the most people (the lowest dose that works). As individual pharmacokinetics and tolerance differ, it is possible that someone else trying this might not be so lucky - as even at low doses you are still getting good antiviral coverage.

However, there are documented cases in clinical trials of sub-optimal doses yielding resistance earlier than expected - and these resistant strains hang about. Some drugs probably can be lowered due to potency and the whole idea of induction maintenance suggests that you can drop everything but a few drugs on therapy (although that idea needs to be re-proved with the more potent drugs). So what you are probably doing is the induction maintenance therapy without knowing which drug(s) are the ones still working. It is probably the way forward, but it one should be careful when doing this - to ensure that viral loads are controlled and that the level of the drugs in the body don't dip below their effective dose....and this latter point will differ between people.

Rich

[newt]

Hey hello

The dose-finding studies work out what level of drug works best for most people = an average.  Some people will get a good response from a lower dose than the standard amount - and, er, the opposite, some people will only get a response from a higher dose than the standard amount.  It depends on how your body and your HIV infection reacts to the meds. Some people's immune systems are better at controlling the virus - maybe they can do with less drugs... (we need to find out proper like).

Induction - maintenance is an important strategy to research, and there really aren't enough studies on how much /many antiretrovirals are needed to suppress HIV infection after the initial heavy hit / first couple of years on treatment to support informed decision-making of dose / drug reduction, so people have to go out on a limb and make their own move etc.   

It is a dead cert that many people will do well long term on less meds, but would be nice to have some way to work out if I am one of them, rather than guessing / trying it.  I have been talking to my doc about is it possible to take less meds for maintenance, he seems okay with me exploring this, and even doing it if I want, but the nurse specialist is in a blue funk n keeps writing me letters asking me to come in an go over my prescription so I can understand it properly 

- matt (thinking but undecided about less drugs)

[antibody]

my doc mentioned i could try weekends off after becoming undectable, this was a few years ago. he was trying to incourage me to  go on treatment. i might have to bring this up on my next visit.

[woodville]

i went for years taking less azt then the doc told me too and still stayed undetectable
it was easier then when i was taking 12 pills a day
now that i am on these combo drugs i am getting a buffalo hump
i think it is because i am being overmedicated
i keep thinking about cutting a third off my truvada and sustiva pill and trying it for a few months
or maybe just the sustiva
my tcells are 1250 and vl undetectable

also - sometimes when i know i will only have a few hours sleep and have to get up early for work - i cut my sustiva in half so i won't feel dizzy in the morning                                             

[Robert]

Shawn Decker, fellow poster and blogger and author of My Pet Virus.    The True Story of a Rebel Without a Cure started a weekly regimine for his meds.  One week on and one week off.  I believe he just started this in Sept or Oct.  His next Dr's appointment is in Dec.  I'm curious to see what his results are.

I also think I'm over-medicated and want to cut back.  Right now I take every 8th day off.  I'd love to make it every other day but I guess I don't have the balls for it.

robert

ps. I highly recommend Shawn's book.  That alone will add 10 years to your life.

[Queen Tokelove]

Well, it's good to know that I am not the only one who cuts their dosage in half. I do that with my diabetic meds. Since I have changed my diet a little bit, I decided to take 3 pills instead of the prescribed 6. I have also been taking my fish oil tabs faithfully. I will have blood drawn on the 4th and the doc visit on the 6th. So, I will see.

[Shawn Decker]

Hey guys,

Yes, I started week on/week in August I believe.  But did week on/week off for two and a half years from 2002-2005.  It was until I got "brave" and/or "stupid" and went off for two months that I got in trouble.  After a year on nonstop, I felt like it was safe to return to the structured week on/week off.

My next appointment is in mid-December.  I'll definitely post on the blog.  I do feel that many are overmedicated under the better-safe-than-sorry philosophy, usually handed down by someone who probably couldn't stomach the meds themself.

Thankful to have HIV meds nonetheless,
Shawn

[suzieque]

   Hey Shawn,
           Just wondering, what meds do you take? Have you had problems with side effects? If so what? Also if you have been affected by side effects have they been better with the week on week off? Apologies if you have answered this before, can't find anything about that.
                  All the best
                         

[allopathicholistic]

He has never been open about doing things differently other then by the book so if things were working well why change was his thought. 

yeah, that, and 'why risk any accusations of medical malpractice'? i'm no mindreader but i'll wager this thought crossed his mind also