POZ Community Forums
Main Forums => Living With HIV => Topic started by: ACinKC on July 24, 2006, 04:55:51 pm
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Hey guys,
I am currently on Sustiva and Truvada and have been having some sleep issues to say the least. I sleep but am NEVER rested due to the vivid dreams...ANYYYYYWAY, I am about to get married in October and travel to St Lucia for 10 days for a honeymoon. I have recently been considering a break from the meds just to feel normal again for awhile, my question is this....
Would you guys take a scheduled/planned medicine break over the honeymoon? Less issues with sleep and partying and getting meds into another country. Not to mention I would actually get to REST some at night! And if so, how to go about this while minimizing the risk of drug resistance in the future?
Thanks for your help on this guys!
Oh and by the way the numbers are
VL-undetectable
cd4-729
cd4%- 34 or 36%
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Congratulations on your upcoming marriage. It's a good thing to have a companion by your side to share your life with. Now as far as taking a vacation on your meds, I wouldn't advise it due to the factor of resistance coming into play.
According to my Doctor and other speakers on HIV/AIDS, it is recommended that you take your meds as prescribed by your Doctor. Without skipping doses.
It's a choice you have to make.
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Hello AC
In terms of taking a 3-week break....in principle, not necessarily bad, but the difficulty here is that, on stopping, Sustiva lingers in the body for a long time, which means that it is present at a low dose that the virus can adapt to. This causes strong resistance to Sustiva in about 50% of people.
However, replacing Sustiva with a PI for 1-3 weeks (depends on the doc) is a standard and it seems effective method of avoiding this.
A break of 3 weeks is unlikely to be a bad thing. But....HIV will be running like wildfire through your body within 5 days of stopping meds, and this may make you quite ill, like flu, which may not be the best way to enjoy a honeymoon....this is not a certain event but definitely possible....
If you are having no night's decent sleep then maybe, wedding n all coming up, now is a good time to discuss the idea of switching Sustiva for something else equally as good well in advance of the trip. This basically means a PI. If you want to stick to a once a day dosing schedule then Reyataz (boosted with a small dose of ritonavir) is probably the least side effect free PI around at the moment, but there some other 1 x day options.
I hope the wedding and honeymoon and life thereafter are glorious. And that you sleep eventually ;)
- matt
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Vacations (from meds -- not the honeymoon kind) seem not to be getting good reviews these days.
If you think the dream/sleep issues are not going away, and you suspect Sustiva, why not talk to your MD about therapy with different meds?
And if you do switch, fill your prescription a week or so before you start using it, so you'll never run out if you have a delay picking up your meds.
Have a great time on your trip!
Rob
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Would you guys take a scheduled/planned medicine break over the honeymoon? ............................... And if so, how to go about this while minimizing the risk of drug resistance in the future?
Thanks for your help on this guys!
Oh and by the way the numbers are
VL-undetectable
cd4-729
cd4%- 34 or 36%
If you want my personal opinion, the answer would be no........ Sorry NO! I gotta tell you, medication breaks are for people that do not understand how these medications work, and how the virus works. Remember this is a mutant virus, and only when we keep it surpressed in the blood stream, are we even capable of winning the fight for survival. I know you want a nice long life, and a happy marriage, and one of the things you are going to have to do to accomplish this is take the medications for the rest of your natural life. Medication breaks used to be considered OK, but lately I know of no doctors that are advocating it and if they do, I would be very suspicious of their HIV knowledge.
I told you this is my personal opinion, and of course it is up to you, but for a temporary respite, I would highly advise against it. It could lead to a long drawn out medication failure, and that would not be a fun trade off. Remember this is now a MANAGABLE disease, but if you screw with it, it can and will lead to premature DEATH.
In Love and Happiness at your marriage announcement.
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Guys, thank you SOOOO much for these answers it TOTALLY is helping me. I have been wishy washy on switching meds for about 2 months now. I have been scared to switch cause my numbers are sooooo good. Who's to say if I can come back to Sustiva etc. if I do switch.
I will consider the PI route and talk to the Doc this week. No vacation from meds for this guy in the forseeable future!
Specific thanks to Moffie and Newt who I had HOPED would answer!
Andrew
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I'm sorry Moffie, but I disagree. The worse that is likely to happen with a straight cold break is an NNRTI resistance, not treatment failure leading to death. This can be avoided (see above).
Yes, studies like the SMART study suggest that long treatment breaks are probably a bad idea, but a 3 week break is more like a wash-out period than the months-long breaks people took on SMART.
Sleep is important, and Sustiva screws your sleep pattern. In the long term, sorting this out is prob. more important to a happy marriage.
- matt
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If you make a straight switch from Sustiva to a PI you can most probably come back to Sustiva in the future if need be. A PI will keep the virus supressed, and replication is needed to develop resistance. Of course, this is not a cast-iron guarantee, but it is the most likely outcome - matt
Now playing: Many Rivers to Cross, Soweto Gospel Choir
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I wouldn't, but it's not my decision.
PS: You don't really think you're gonna get any sleep on your honeymoon do you? ;D
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Not with the woman I AM MARRYING! Thank god for small miracles! I get HIV get out of a loveless sexless marriage and meet the love of my life and a friggin NYMPHO who loves me for ME!
Screw Powerball, this is the REAL jackpot!
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Hello Ac,
My own personal response to your question is NO ! I would not take this risk. Period ! There is not a day that goes by, when I would like to think of going on some mini- med vacation, or skipping a day or two of meds.,but that is not going to happen. The day will come when I will probably have to take some break from the meds, because my body is telling me so.
There is a lesson on this site regarding treatment interruptions, you may find it interesting.
Click below :
http://www.aidsmeds.com/lessons/STIs1.htm
Take care-----Ray
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Some people on these forums seem to have ditched Sustiva and started on Viramune, with good results (I'm thinking specifically of Dingo/Bailey, but I know there are others), and therefore "sparing" the PIs, staying within the NNRTI class. Perhaps that's an option as well? Jay
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OK an update. My ID Doc just called and said WHOOOOOOA TIGER! He is NOT a fan of a holiday from the meds due to EXACTLY what newt and you guys are talking about regarding resistance. They are going to try and tackle the sleep and fatigue issue from another angle first because my numbers are soooo good on the sustiva truvada bomb!
I will keep you guys posted on what transpires over the next few days.
Andrew
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Also, and i may sound dumb as a post here but I don't care.....
Whats the REAL difference between the PI's and NNRTI's? I have read through the drug type section and after several episodes of the GLAZED LOOK, i couldn't determine what that was. My best guess as I read it, one keeps it from getting INTO the cells (PI) and the other prevents it from COMING OUT (NNRTI) is this about right?
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Er, nukes & non-nukes (NNRTIs) work by stopping one of the main ways HIV reproduces inside the CD4 cell, protease inhibitors work by stopping any new HIV virus from leaving the CD4 cell.
Picture of HIV life cycle and points of drug intervention (http://www.i-base.info/guides/starting/introduction.html#life)
- matt
Now playing: Lilac Wine, Jeff Buckley
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Newt... THANKS!!! I am a visual learner that helps with what ive learned. I still rather new to the club, 2 and a half years for me.
I'll keep ya posted!
Andrew
Now Playing: With himself
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I am not a fan of vacations. Over the past 22 years, i have taken several. All of them have been a complete disaster, my numbers went in the wrong direction each and every time.
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OK just talked to the Doc again. We discussed Viramune briefly but he is worried about my liver. My CD4 count is at 729 right now and as I have read Viramune is not a "best case" option for those with CD4 counts over 300 or so. I am going to meet with him on Friday to discuss other options. He is really a GREAT doc. And if there is anyone in the Kansas City area who is unhappy with who they have, PM me and I'll get you his info!
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Hello AC,
Thanks for the update. Let us know what you and the doctor decide on.
Wishing you the best-----Ray
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OK the UPDATE....
Met with the Dr. on Friday, I have the BEST I.D. doc ever, and we decided that we will first try to switch WHEN I take my cocktail. I have been taking the Sustiva/Truvada now in the morning and a melatonin at night right before bed.
After a couple of days it's still pretty wierd, feel slightly "off" is the only way to describe it. Was dizzy and off center one day. Today and yesterday morning it was like a "brain fog". If i move my head around to quickly or stand up to fast I get real out of sorts. ZERO concentration level (it actually has taken me 3 days to write this! ::) ) This usually lasts for about 3 hours or so. Cooties SUCKS ASS! And not in that good perverted "ass to mouth" kind of way.
Anyone else taking this combo during the day?
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AC: If you like blogs, Shawn's blog talks about his STI
click here to read the blog (http://blogs.poz.com/shawn/)
And here's the link where you can comment on it after reading it
click here to read or contribute to the comment thread (http://forums.poz.com/index.php?topic=920.0)
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I just quickly scanned the replies to your post and have to agree with those who advised AGAINST any "vacation" from meds. Not a single freind of mine who went on a vacation has ever had a good outcome.
I'm on Epzicom and Keletra - just 5 pills once a day (food or no food) - and it ROCKS!
With all the variations of meds out there, i'm SURE he can come up with a combo that is both effective and get's ya out of the dreams.
My partner's been on Sustiva for nearly 10 years and his "dreams" seem to only occur now in periods of stress (both good and bad). Seems a busy mind is firtle ground for this side-effect and so in times of stress my hubby's usually bitching about his restless nights of sleep and vivid dreams.
So, my counsel is - get with your DOC again and take out that sheet of meds and talk about a new combo!