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Author Topic: Question Re Truvada & Sustiva - need help from users pls  (Read 2278 times)

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Offline Delby

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Question Re Truvada & Sustiva - need help from users pls
« on: February 16, 2008, 11:42:04 AM »
Hi Everyone,

Its been a while since i last posted but alot has happened in a short space of time. As i anticipated my CD4 count continued on a downward trend and my VL increased. I had a meeting with my Doc last monday and my results were given to me (CD4 319, 19% & VL 70k). I was given no alternative but to begin my meds. I was diagnosed in Oct 06, so within 17 months i have progressed to the point of need meds. I relayed my anxieties and fears of being a fast progressor to my doctor, but he confirmed that it doesnt matter whether a patient starts within 1 yr or 10 yrs, as you'll both be starting on a level playing field and will have just as good a chance in terms of long term prognosis and response to meds. I have had this confirmed by another ID specialist, so despite my despair of progressing so fast, i have taken on board what they both said and remain opptimistic.

I began Truvada & Sustiva last monday. Today marks my 6th day on meds. So far I have experienced, extreme fatigue, dizziness, diarrhea, bit of nasuea (not major), sleeplessness and extreme headaches (usually in morning). However, despite these side effects, i feel i am doing relatively ok. My main worry and fear before strating meds was nasuea and vomitting as i have watched my brother endure chemo when he battled cancer, so that was a huge worry. Apart from the odd feeling of nasuea it has been ok. I was scared of beginning the meds, but really what choice did i have, and how grateful i should be that there exists medication to prolong and save my life. Its not ideal, but its certainly better than the alternative. When i took my meds for the first time, i prepared myself as if i was going into battle, no regrets and no looking back. Hoepfully when i go back in 4 weeks, the proof will be in the results.

I have a very important question which i would be so grateful if those out there with knowledge or experience on this combo could help answer. OK, i have been taking my meds at 10.30pm every night, but obviously this is going to be difficult if i am at the cinema, late meal, at a friends etc. When i picked up my prescription i asked my doc about this, and he said i could take them anytime between 9pm and 2am as they are quite forgiving. However, this is contrary to what i've read and understood, which is Truvada and Sustiva must be taken at the SAME TIME each night. I dont want to mess around with my meds or dosing, but i am also sad to learn that my night neds at 10.30pm each evening and dont know what i will tell people when we are out. I also know that you should stop eating 2 hrs before. So this implies that i can never go out for dinner later than 8.30pm. I want to do the right thing and dont know who to believe, the doc, or the advise given on the Truvada & sustiva websites.

Can anyone help me out? Thanking you all in advance.


Offline Miss Philicia

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Re: Question Re Truvada & Sustiva - need help from users pls
« Reply #1 on: February 16, 2008, 11:55:02 AM »
I can't remember how forgiving each of those specific meds are, they all have a bit of different latitude.  I just try to stay within a couple hours on either side.

But I think you're worry over a bit much.   You're on a grand whopping total of what -- two pills?  Buy yourself a little pill box that's semi-flat that fits down in the pocket of your jeans.  Nothing big... then how hard is it to get up at the cinema and throw them back at the water fountain while you're supposedly out taking a piss?  Really, this is not a big deal... just takes some planning that's all.  If there's no water fountain you just need to get over it and lean over and suck some water from a faucet in the bath room.  I handled doing all of this for years and on regimens of 4 times as many pills that you're on.  You'll be fine, and doing what I suggest will keep you more on your pill schedule while not interfering with a busy, active lifestyle.

As far as the rest of your post, Delby, your doctors are completely correct about your "fast progression" worries so put all of that out of your head.  Glad to hear that your side effects are, thus far, tolerable... it's generally the first 4 weeks are so that stuff like that happens then it becomes usually more minimal.
"Iíve slept with enough men to know that Iím not gay"

Offline MOONLIGHT1114

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Re: Question Re Truvada & Sustiva - need help from users pls
« Reply #2 on: February 16, 2008, 12:10:20 PM »
I was diagnosed in Dec '93, began meds in '95.  I used to take 20 pills a day.

Currently I am on Sustiva and Truvada (Sustiva since '02 and truvada since '05).  I take them when I know I am in for the night.  If I go to bed at 10pm, I take them then.  If I am out seeing a band and don't get home until 230am, I take them then.  Yes, they are quite forgiving as far as "scheduling."  I was initially concerned that if I took the meds too late in the evening that I would be "foggy" in the morning, but that hasn't been the case.

I had dizziness in the beginning but it has subsided, or perhaps the effects occur while I am already asleep.  I also snack in the evenings and never have an empty stomach in time for my meds.  I know this is a no-no, but I had CD4s in the mid-300s when I started this regimen in 2005.  Look below for my current labs.  So many other things (i.e. work and STRESS) can affect the meds, IMO.

Calm down and roll with it.  This med schedule will be much easier than you ever anticipated.  Best of luck to you.

~ Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline newt

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Re: Question Re Truvada & Sustiva - need help from users pls
« Reply #3 on: February 16, 2008, 12:10:38 PM »
Well the package inserts are kinda "don;t sue me I am a drug company" is some respects...

SAME TIME is an elastic concept depending on which drugs you's on

Yes, ideally you would take the meds at the same time every day. But practically...

Sustiva, once you've been on it 5 days it don't really matter when you take it (it kinda builds up a regular presence like). Truvada, I pressed a doc at my clinic on this, one who is extremely conservative on these matters, and gave me the very common "1-2 hours leeway" speech, then when when I pressed him a bit more said, quite definitively, Truvada, within +5 hours.

So he ho, this matches what your doc says -- between 9pm and 2am.

What your doc didn;t say is you don;t have to take these meds together, and while I personally find it easier to do everything in one go, you do have the option of taking Truvada and Sustiva at different times. The 2 hrs no food thing is for Sustiva, since many people find a full stomach increase side effects.  With Truvada, many people find food reduces side effects.

The important thing on this combo is to take it every day during the same part of the day, there's no need to worry tooooo much about the timing.

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

Offline Delby

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Re: Question Re Truvada & Sustiva - need help from users pls
« Reply #4 on: February 18, 2008, 06:14:44 AM »
Thank you to those that responded - Thanks Cindy, Newt & Philly for all your great input and advise. To any others out there that may want to share their advice or experience on when and how to take Truvada & Sustiva then i'm sure it will be a help to me and to others. Thanks again Cindy, Newt & Philly !!



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