POZ Community Forums
Main Forums => Living With HIV => Topic started by: leatherman on August 24, 2007, 09:53:14 am
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Having read, and been a part of, several threads concerning the recent cover story on Poz magazine, I was left wondering something:
How many people here take only 1 pill a day for HIV?
My first thought is that many people come to these forums looking for more information/support due to complications in their lives from HIV and/or the meds. That leads me to think that many of us here probably are NOT lucky enough to be on the "one a day" plan. Taking more than 3 or 4 meds a day (which would "up" the possibility of side effects) probably would explain many people's concern/disgust with the idea of "HIVlite".
I'm not certain whether any of my suppositions are correct and I'm sure NOT trying to start a heated debate. Interesting as those debates are (and there have been quite a few of them here in the last few days), I am really only curious as to how many people are "lucky" enough to be on such a low number of meds.
Personally, I once was on only one med (AZT); but the side effects were so devastating that I quit taking it before it, instead of the HIV, killed me. Eventually, though several different regimens, I hit a high mark of 32 a day. With improvements in treatment, I'm down to 8 a day (with only minimal side effects now).
Thanks for your time/comments!
mIkIE
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Interesting poll. Do the numbers only represent ARV or do you also want to include the supplements and the pills against side effects?
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Well for hiv I take one pill atripila... but, I can remeber taking 30 plus under a study every 4 hours I had to take 8 pills the size of prenatal vitamins... they had to be kept in the firdge or in a cooler when at work.. I'd even have to wake up in the middle of the night to take a dose of 8 pills... speaking of side effects... today the side effects are fewer and far between... also I was drinking about 6 liters of various herbs that were suppose to be antiviral... life is so much less complicated today with the new regimines... out of that study back before the new meds came to light... I'm the only one alive today out of 30 people I know...
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I took 3 when I was first positive but then Atripla came along and I take one a day. Well of course I also take the obligatory fish oil and vitamin pills...Joe
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Interesting poll. Do the numbers only represent ARV or do you also want to include the supplements and the pills against side effects?
good question. personally, i think those should be included also. to me, that's the only way to do a fair assessment. not including those is like not counting those hidden fees tacked onto the advertised prices of airline tickets and cars and such- it's hooey. doing it that way really only serves the marketer.
for the record: i take 9. eight ARV's and a crestor.
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Interesting poll. Do the numbers only represent ARV or do you also want to include the supplements and the pills against side effects?
There was a previous poll (http://forums.poz.com/index.php?topic=10359.0 (http://forums.poz.com/index.php?topic=10359.0)) that included other meds, vitamins, supplements, etc. I was just trying to get a feel for the actual HIV meds that everyone was taking. Since the "HIVlite" version seems to be to take 1 pill per day and everything is fine, I was curious as to how many people here where actually having that kind of experience.
edited to include:
for disclosure purposes, I take 2 Reyataz, 1 Viread, 2 Viramune, 1 Didanosine, and 1 Norvir daily. Also, having tcells under 300 these last 13 yrs, 1 Bactrim. (having two bouts of pnuemonia - once PCP - was quite enough for me ;))
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If we're just talking HIV meds, I need to change my answer from 9 to 3.
Sustiva and Combivir.
Everything else is for neuropathy, arthritis, cholesterol, etc.
(Maybe I'll be able to get them all in one big freakin' horse pill someday.)
(oops...plus 1 injectable bi-weekly, androgel, and a topical for psoriasis control...but those aren't pills...)
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Alright then. Strictly speaking of ARV, that's 5 (1 Kivexa/Epzicom + 4 Kaletra) for the record.
For controlling side effects there's also 1 Imodium + 1 Kreon + 2 Fishoil. Makes 9.
For PCP prophylaxis there's 0.5 Bactrim. Makes 9.5.
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I take 9 and 2 600mg of Gabapentin for neuropathy.
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I take:
2 Norvir
2 Lexiva
1 Epzicom
2 Fuzeon injections daily
1 Depakote
1 Wellbutrin XL
1 Propecia (so the Depakote doesn't make my all my hair fall out)
and vitamins...
1 L Methionine
1 Multi Vitamin
1 l Carnitine
2 Super Omega 3 fatty acids
1 Choline
1 Alpha Lipoic Acid
17 total
Fun Fun Fun! Frankly, I think I am healthier since I found out I have HIV. Before I just had 3-4 shots of tequila and thought I was doing just fine!
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one pill? I wish! I take 14 pills a day just for HIV.
6 Kaletra
4 Invirase
2 Viramune
2 Epivir
Plus
1 Lipitor
1Valtrex
1 Prevacid
I would do this, but the brainfog is kind of heavy today...
Hopefully somebone will give a personal accounting of the time BEFORE HAART or pre 1996 of the extremly toxic, complictated drug regimines we had to endure BEFORE Protease Inhibitors. Remember when ALL we had was AZT? My quality of life sucked so damn bad on that drug I would rather die than take that drug again. Or did anyone have the deadly allergic reaction to Ziagen? That drug put me in the hospital.
Dan
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What, some people are taking just one pill?! Everyone knows that can't be true, I read it on Aidsmeds ::)
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I only take Atripla for my HIV but I also take Xanax for HIV related anxiety and Ambien for HIV related sleeplessness and a prenatal for health and lots of ibuprofen for HIV stress headaches. i consider myself very fortunate that it's not more. Cristy
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Currently, I'm taking one pill a day which is Atripla. This treatment seems to be working for me considering only after one month it raised my t-cells and lowed my viral load to undetectable with minimal side effects. I was diagnosed with HIV in 1997. :)
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I have never taken one pill a day, in fact there's never been a time I went below 10 even back when only two HIV meds were on the market, as I was also inevitably taking some other prophylactic or a handful (or more) of nutritional/vitamin supplements. I'd say I've averaged a good 30 pills/day for the past decade, AND I swallow them all at once because I'm just skilled like that.
2 injections of fuzeon daily (sorry folks, but this should count for at least 10 pills itself in the equation! tee hee)
4 Prezista
2 Norvir
1 Truvada
1 Diovan (blood pressure)
4-8 Neurontin (peripheral neuropathy issue)
6 Loperamide (potential diarrhea)
6 Pancrecarb (digestive enzyme also for diarrhea)
1 multi-vitamin
1 fish oil
1 calcium pill
KLONOPIN AS NEEDED!
(gee... is that REALLY around 30 pills!?!?)
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At the moment, for HIV I take:
1 Reyataz 300mg
1 Norvir 100 mg
2 Combivir (whatever the dosage is)
For the other stuff I take:
4 Fish oil capsules
1 Zetia
1 Pravastatin
2 Pepcid
1 Vitamin
2 Milk Thistle
4 Saw Palmetto
HUGS,
Mark
Who is willing to challenge Philly to a swallowing contest ;)
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Given that I started taking vitamins/minerals etc because I was diagnosed with HIV, I take 8 pills twice a day, that's 16 pills and I'm not on HIV specific meds yet.
Milker.
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I take Sustiva/Truvada and haven't made the switch to Atripla, though I should now that it is on my formulary and to eliminate a co-pay. I also take one multivitamin, but no ther supplements. Used to take a lot more when I was on on an anti-depressant and my Kaletra combo.
I find the dosing frequency and elimination of needing to take meds with food makes a difference, but the amount of pills never phased me much. Just gulped 'em down.
So two pills plus the multivitamin once a day and hopefully will stay that way for many many years to come...
:)
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I find the dosing frequency and elimination of needing to take meds with food makes a difference, but the amount of pills never phased me much. Just gulped 'em down.
I so totally agree. I was once on a combo for years that was 2 doses/day WITH food and another one WITHOUT food. It was so wretched to co-ordinate all of this while at the same time working ~50/hours a week, plus all the other activities I had to do.
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I take two pills at 8:00 Am ( Viramune and Epzicom) and two pills at 8:00 pm( Viramune and Viread)
And one crestor at night. So a total of 5, not including Vitamins and supplements.
Ray
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I take 2 pills per day, 1 Truvada and 1 Sustiva, both before bedtime. I feel fortunate to have this simple regimen available to me.
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I can remember taking more than two dozen pills a day, just for HIV. Now, thankfully, it's:
1 - Truvada
1 - Reyataz
1 - Norvir
On top of that:
2 - Loperamide
1 - Celexa
2 - Wellbutrin
1 - Acyclovir
2 - Chantix
4 - Vitamins and Supplements
That brings it to 16 total, but only 3 actual HIV meds.
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I take 2 pills per day, 1 Truvada and 1 Sustiva, both before bedtime. I feel fortunate to have this simple regimen available to me.
I have the same regimen with a few "extras."
1 Truvada
1 Sustiva
1 Pravachol
1 Levoxyl
1 Aspirin
Xanax and Imodium as needed. Was trying a multi-vitamin and Glucosamine, but they both tear my stomach up. I'm glad I'm not on those PIs anymore. It was 20 pills a day for 6 years for me, and YES, those pills were huge and nasty.
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I fondly remember my first regimen:
6 AZT
2 Epivir
9 Saquinavir (which I quickly dumped for only 6 Crixivan)
Ah, those were the days.
HUGS,
Mark
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Again, I feel so damn lucky. I only take one pill for HIV... Atripla. The side effects are minimal and compliance is no problem. My boyfriend just started on Atripla and he is doing well. He is not experiencing any side effects except the dizziness. Along with the Atripla, I also take 1 Centrum Silver and 1 Acidophilus recommended to me by my nutritionist. In all a total of 3 pills. The Centrum and acidophilus when I get up and the Atripla at night before bed.
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Atripla and Bactrim no complaints!
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I remember MY first regimen very well, Mark...
AZT AZT AZT AZT AZT AZT AZT AZT........
Now, I take 3 pills each day for HIV, and about 15 in total. I am happy with this, since at one time I was taking about 45 pills a day. (and I was over-medicated, too!).
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Remember when ALL we had was AZT? My quality of life sucked so damn bad on that drug I would rather die than take that drug again. Or did anyone have the deadly allergic reaction to Ziagen? That drug put me in the hospital.
Sounds like a new thread: which med did you hate the most? LOL
Mine would be a three-way tie:
1) AZT because it was killing me faster than my partner was dying
2) Sustiva because after 9 months I was still having incredible nightmares, or because it kept me so dopey that I had to quit my job and I fell down the stairs one morning
3) Norvir because in liquid form it was like swallowing gasoline; or because at one time I was having to take 8 huge gel caps of it a day; or because the one a day I take now is still the one med that makes me barf.
Even though I'm not down to just one pill a day, it's still a helluva lot better for me than what I was taking 10 yrs ago. Matter of fact, my latest refill had a change. The two 150mg of Reyataz has been changed to one 300mg pill. WooHoo! That puts me down to 6 pills a day. I may be in the same category (5 to 10) but it's still a small victory.
AZT AZT AZT AZT AZT AZT AZT AZT........
taken every 4 hrs.
hmmm, maybe that one does get my "most hated med award" after all. ;)
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leatherman, it DEFINITELY gets my "most hated" award, followed by:
2) liquid Norvir (tasted like burnt rubber and kerosene)
3) Mepron (looked like mustard, but tasted much worse)
4) Megace (chalky, bitter milk)
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I take three for HIV (reyetaz, norvir and truvada)
I also take one multi-vitamin and one claritin.
I used to take lots more ... I may start that stop smoking pill someday soon. But we will worry about that later.
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I may start that stop smoking pill someday soon. But we will worry about that later.
My next doctor appt is 8/30, and I'm finally going to give in and let him write me the script for that. I used to "know" that I wouldn't be living long enough to die of lung cancer so I didn't think I should have to quit my ONLY vice. (except for about 9 months during 2 bouts of pnuemonia. It's hard to smoke when you can't breathe. LOL) But since I seem to have gotten healthier and moved away from being so sick that "you've only got 3 months to live", I guess I need to worry about this now too. ::)
Oh, and here's another thread idea: which med did you like the most? ;D
I didn't really mind the 2 big ol' tablets of Videx. Crush it up and mix it into any drink, ignore the gritty, antacid taste and gulp it down. ;D
So many people taking vitamins. I would too, but they make me barf. I do enough of that on the rest of my meds without making that situation any worse. ;)
and Thanks everyone for all the replies so far!
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I think my first regimen must have been AZT and ddi, just by going on what was available that year. I also remember them adding hydroxyurea early on... so that potent brew assuredly gave me lipo years later. I also consumed massive amounts of blue green algae supplements and shark cartilage -- omg that stuff gave me the most profuse gas. And it was really expensive but it was horribly cutting edge for HIV treatment at the time -- there was a book out at the time called "No Time To Wait" that espoused this stuff and I went to several lectures by the author... years later I learned he'd been a huge early disco DJ pioneer at NYC's "The Gallery." Total kook in person.
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in those early days, we would have gargled with Drano if any doctor suggested that it might help.....we were that desperate. (come to think of it, that wouldn't have been much worse than AZT)
I took my cousin Mark to that doctor in Atlanta who was heating up people's blood and putting it back in....but he was too far gone for that kook even....
he died in 1990.
I wish the HIV meds could be like my cardiac med Coreg. Works great, a very small pill, and no side effects that I can detect.
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in those early days, we would have gargled with Drano if any doctor suggested that it might help.....we were that desperate. (come to think of it, that wouldn't have been much worse than AZT)
I took my cousin Mark to that doctor in Atlanta who was heating up people's blood and putting it back in....but he was too far gone for that kook even....
he died in 1990.
I wish the HIV meds could be like my cardiac med Coreg. Works great, a very small pill, and no side effects that I can detect.
Oh lordy Alan, I had a friend, actually, the lover of an old friend, who went through the blood heating episode. He barely survived it. He died about six or seven months later.
You're right about the desperation too. I took 200 mcgs of selenium faithfully every day because my doc said it might help. I usually washed down with a spirulina/banana smoothie. I think I still have some of the powdered spirulina in a cupboard here.
I even tried the bowel cleansing schtick - boy, was that fun! :o :o :o It was meant to remove the poisons from your system. It removed everything.
One thing I could never do was gain weight. I was constantly being chastised for being too thin. I got the "When you get sick, you need something to fight with. Pack on those pounds" talk every time I saw the doc.
Damn, what memories we have.
HUGS,
Mark
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I take one pill for HIV itself - Atripla. I still take Bactrim to keep that pesky PCP away. One nice thing about Bactrim... it's used for adult acne. I've had the best complexion in over 10 years since being on it! Along with those two, I take Adderall 3x a day, Allegra (sinus issues), Lisinopril (hypertension), and an occasional Klonopin. It all kind of makes me feel like an old person! ;)
David
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Currently, I'm taking one pill a day which is Atripla. This treatment seems to be working for me considering only after one month it raised my t-cells and lowed my viral load to undetectable with minimal side effects. I was diagnosed with HIV in 1997. :)
Nice to meet you. I have been infected just as long as you but not yet on meds. When I start meds, Atripla and Abacavir is what I will be on. I'm just hoping I will have minimal side effects too. I guess I'm just comparing notes. ;D
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You people just amaze me. And I whine about my pills I take for my diabetes. You guys, most of you, take so many pills a day, how do you do it? I think I saw a post where someone takes over 30 pills or use to. Wow. You all are really an inspiration for me. When I start my regimen and if I ever complain, someone please kick my ass.... :D
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in those early days, we would have gargled with Drano if any doctor suggested that it might help.....we were that desperate. (come to think of it, that wouldn't have been much worse than AZT)
why gargle with Drano when you can leisurely sip on liquid Norvir??
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You people just amaze me. And I whine about my pills I take for my diabetes. You guys, most of you, take so many pills a day, how do you do it? I think I saw a post where someone takes over 30 pills or use to. Wow. You all are really an inspiration for me. When I start my regimen and if I ever complain, someone please kick my ass.... :D
As usual Queen says it more eloquently than I ever could. But I agree 100%. I am reading a book called"And The Band Played On" by Randy Shilts.It's about the early HIV years.I would suggest that anyone of us read it. Sorry for the hijack. Cristy
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I think I saw a post where someone takes over 30 pills or use to. Wow. You all are really an inspiration for me. When I start my regimen and if I ever complain, someone please kick my ass.... :D
Queen honey,
I don't think most of us thought (or think now) that we were doing anything so "wonderful". We were just ordinary people, doing what we had to do to survive. You would do the same, I'm sure. A lot of it was awful, and some of it still is for many of us. But I still think it beats the alternative. I made the choice to live, even when I was told I would die. I still see it as a choice I make every single day. As Mark said so eloquently, each day is a blessing, one we would not have had if it hadn't been for those "awful meds". I am thankful to be here and leading a fairly normal life.
hugs,
Alan
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Reyataz, Norvir & Tuvada was the easiest combo for me to adhear to until Truvada start messing with my kidneys. I've never taken any retrovirals in liquid form but I have taken Mepron YUCK! It lolked like yellow tempra paint & tasted vile!
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I am on Atripla for HIV, but I take a whole host of other meds as prophylactics...
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::notes that I'm in the lowest percentile in the poll::
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::notes that I'm in the lowest percentile in the poll::
I'm right there with ya babe. :-*
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Atripla here.
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Nine here if you include the two Fuzeon injections.
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Nine here if you include the two Fuzeon injections.
Fuzeon injections count for 10 pills each time (though I did not calculate my tally in that manner, if I did I'd get a Medal of Honor).
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Fuzeon injections count for 10 pills each time (though I did not calculate my tally in that manner, if I did I'd get a Medal of Honor).
Maybe not 10 but at least 4....2 for mixing and 2 for injecting. Ah hell, lets add one for the ensuing injection site rxn and make it 5.
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I take Atripla
plus multi vitamin
selenium
3 pills
plus my daily danactive....
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3 pills a day. 2 Viremune and 1 Truvada each morning.
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let's see....
breakfast
1 Videx
1 Adderall
(http://www.mysmiley.net/imgs/smile/sick/sick0019.gif)
lunch
2 Kaletra
1 Ziagen
1 Cymbalta
(http://www.mysmiley.net/imgs/smile/sick/sick0021.gif)
snack
1 lipitor
dinner
2 Kaletra
1 Ziagen
(http://www.mysmiley.net/imgs/smile/sick/sick0002.gif)
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I take Atripla, every night at 10pm EST.
I do not consider vitamins "medicine" for HIV but here is what I take:
Vitamins E, B-complex, Ester C, Cod Liver Oil, L-Carnitine and a Probiotic complex for my intestinal tract.
In addition I also drink 6 ounces of Monavie a day.
As far as my diet goes, I maintain a healthy diet most of the time but at times I do eat what I want (think weekends). I work out at my gym 5 days a week so if I binge on pizza during a football game on saturday or sunday I have it worked off me by thursday at the latest.
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2 x ritonavir 100mg (Norvir)
2 x fosamprenavir 700mg (Telzir or Lexiva, depending where you live)
1 x Truvada
all once a day at 8:30am.
Atripla's out 'cos sustiva sends me quite queer! ;D
(Plus the odd selenium tablet from time to time.)
Carl
Manchester, UK
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I do. Other than taking about every vitamin underneath the sun. My doctor knows of my vitamins. I keep her upd8d. I do not consider my vitamins a part of my HIV therapy. It is just stuff like Vitamins A-E, Vitamin K, and other health stuff.
Rob
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Morning: 1 multivitamin (Centrum Silver)
1 Tricor (triglycerides)
1 Acyclovir
1 Claritin (generic version)
2 Fish Oil
1 Selenium
1 Diazide (diuretic for Meniere's Disease)
Dinner: 2 Fish Oil
1 Acyclovir
Bedtime: 1 Atripla
2 Fish Oil
I think the fish oil has helped begin to lower the triglycerides. They are down about 10% from where they were three months ago.
Gary
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As the poll approaches 100 (it was 98 when I figured out these numbers)
46% take 0-1
54% take 2-10+
Those are better numbers than I thought I'd see. Oh I understand that this doesn't take into account all the vitamins and extra meds; but with all the hype about only 1 pill a day, I was really curious to get a feel of how true that really was. So it looks like just less than half of us have an easier time with only one or no meds; and just over half of us deal with a handful of meds.
Thanks again for everyone's input so far!
I see that:
I must be missing something and probably ought to start taking vitamins;
as much as I hate my meds, they could be worse (yuck to Sustiva and Fuzeon injections);
and although I'm not in the "lucky" 29% taking only 1 a day, at least I'm average in the 34% taking 5 or less. ;)
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Epzicom, Lexiva, Norvir
1 of 1 +
2 of 1 +
2 of 1
5 pills