Doctor recommending Sustiva + Combivir, anyone had luck with these?

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[izprince1984]

?

The first doctor I saw was going to throw in Zidovudine, but I had other thoughts about that shit, I've read some really HORRIFIC things about it.

The doctor is reasonably sure that I could be approved for Hoosier Healthwise within the year, and that I could start on the meds before my condition deteriorates a lot further, other than that I'd have no chance of getting treatment.

I did get my results back, and they were worse than I had figured, CD4 is 178 and VL is around 85,000.

[Grendel]

I have no idea what other factors may be at play in your situation, but I can say that my experience with Sustiva/Combivir was not too bad. I was on that for about 2 years a while back. I eventually had to switch off of it as I had two lab results in a row that showed the virus was becoming resistant.

And with the caveat that everyone reacts differently, I will say that the side effects for me were not too bad once past the initial phase. The first 4-5 weeks were awful on the Sustiva. I felt dizzy and kinda woozy/nauseous the whole time. That eventually passed after I learned to adjust my diet and started taking Sustiva right as I went to bed. Thankfully by the time I got up, the worst of the side effects had passed. I did have wild dreams while on the Sustiva though. That side effect never went away. Certain foods seem to really influence how the Sustiva affected me as well. I don't recall for sure now, but I think fatty things were the worst. I don't eat fast food much at all anymore, but I used to eat it all the time and Sustiva was one of the main reasons why I had to start really cleaning up my diet.

Hope that helps some. My main strongest recommendation with Sustiva though is to take it at bedtime. It really does affect the mind, imho.

[cubbybear]

My first med regimen in 2005 was Sustiva and Combivir.  Unfortunately within 2 weeks, my haemoglobin crashed to near fatal levels and I needed several blood transfusions.  Apparently due to the AZT component in Combivir.  I was switched to Truvada and Sustiva and everything has been peachy and I don't get ANY Sustiva side effects, even on a huge fatty meal.

Personally, I'm not a fan of AZT, and I'd say, if you can take something else, like Truvada, do it.

[Blixer]

I have a good friend that started Sustiva + Combivir two years ago.  His first week was rough but after that he says it has been smooth sailing.  He takes the Combivir at 7 AM and 7 PM and the Sustiva at bed time.  I'm on the sustiva but not comvibir.  I take my sustiva at 6 AM every morning.  Sustiva + Combivir is a twice a day deal.  I definately prefer the once a day dosing.  I tihnk they are probably very effective if you don't have any resistance.  But once a day is so much nicer in my opinion.  I would miss a dose from time to time if I had to remember twice a day I'm sure.

[SoSadTooBad]

Almost year into a Sustiva and Combivir regimin - so far, so good.  I started with a CD4 of 78 and a VL of 36,000, so was way down there on the CD4 count. 

Undetectible and have a CD4 count of 355 now, so I am pretty happy. 

I take Combivir at 5am and 5pm, and Sustiva at bedtime.  Combivir bothers my stomach a little bit unless I eat a little something, and Sustiva makes me dizzy, so it is important that I take it right before bed. 

While this is not the newest combo on the block, I have had great success with it - liver enzymes normal, cholesterol normal and no issues with red blood cells.  I do worry about long term exposure to AZT, and would at some point like to get off it, but I cannot argue with the simplicity or the effectiveness of it.

Best of luck to you.

[Gary]

Hi, I had success with sustiva and combivir and was on that combo for about 3 years, it got me from a viral load of almost a million to undetectable in less than five months.  It took a me few weeks to get used to, I still get a bit dizzy on the sustiva. I dropped the combivir in favour of Truvada in Jan 07.  I've never felt better in my life!  The combivir had been giving me fatigue and was a possible cause of pancreatitis. The fatigue was part of my life and at times was so subtle it was only when I changed my meds I noticed my life was so much  better.  In my opinion, combivir is good, but Truvada is amazing (touch wood)

[matty.the.damned]

Matty the Damned took Stocrin (sustiva) along with 3TC and Tenofovir as part of his first combo back in 2003. It did strange things to his brain, including making him aggressive and unpleasant.

To this day, he doesn't know how they could tell.

In any event my current combo includes AZT as part of Trizivir. For the first couple of months I suffered from terrible headaches which Frau Eva told me was a result of the AZT. These have settled down.

There was some talk of swapping the Trizivir for Truvada, but apparently tenofovir is a no-no because I've got damaged kidneys as a result of having Henoch-Schoenleins Purpura.

MtD
(Who thinks Henoch-Schoenleins Purpura is a way cool name for a disease)

[franfrog]

Matty,
I started on sustiva and combivir almost three years ago.  When I was diagnosed and started this regimen my cd4 was at 52 and vl was off the charts.  After 3 WEEKS  of being on it my cd4 had climbed to above 200.  Now in July it will be 3 years that I have been on this regimen and I just had my bloodwork back and my cd4 is at 624 and vl is at 78.  This was undetectable but it was coming down from a cold not that much earlier where it went up to 195.  The first night was not so nice.  It was hallucinations and weird dreams and I still have some wicked dreams but given my numbers I will deal with it.
You will definitely hear the same thing over and over that the meds are different for everyone so I will not repeat that.  I do have to say though if you have as much luck as I did you are going to be happy!  Good luck!

[David_NC]

I don't know anything about combivir, except some that I know who took it in the past had pretty bad fatigue from it.  As to the Sustiva, right before bedtime is the best time for it.  Food doesn't seem to effect it for me, except for roasted peanuts.  I ate some one night then took my Atripla.  I woke up with a major Tequila hangover headache.... but I hadn't had any alcohol that night.  Definitely take it as directed - before bed on an empty stomach - in the beginning.  After a bit, try eating a little and you'll get a feel for how it's going to effect you.  Other than some pretty cool vivid dreams, the Sustiva (in Atripla) has been kind to me so far.  Good luck with whatever regimen you and your Dr. decide on.

David

[budndallastx]

I tried Combivir / Sustiva but couldn't handle the Nausea from the AZT.  On the third day, I was vomitting as soon as I swallowed the pill.  So I went back to the Truvada / Sustiva combo and do monthly tests to monitor my kidneys.  The Truvada hasn't affected me yet and the Sustiva is a great sleeping pill for me.  I pop it and am asleep in 10 minutes (with the dreams of course).

[jack]

All the drugs effect everyone differently. I never had any real problems on azt or combivir, except for some mid day fatigue. Now Sustiva was a killer for me. Made me very depressed, nauseous and caused some wild episodes of vertigo. A lot of the sides from different drugs subside after a few weeks,if they don't you might need to change. There is no reason to be miserable,there are too many drugs now.

[Pilot]

In the beginning I was on Viracept and Combivir...then went to Sustiva and Combivir...now i have switched to Atripla because my doctor said the Combivir was hard on the liver ...although all my test in the last ten years have been fine...liver and kidneys working fine......according to him, I have it beat to a stand still and he plans on keeping alive until Im at least 120 years old...I told him it would look very funny having me push him around in a wheel chair while he treated his patience.....the only side affect I had with the Sustiva was that I got a drunk feeling sometimes...didnt bother me and was cheaper than going out for cocktails.....living in Saint Louis its getting pretty expensive to have cocktails or a beer......lol..

Pilot....who has no problem taking anything but hates living in a three story house alone....tax appraisers should burn in hell......lol........

[Dragonette]

I started on Sustiva and Combivir and after 3 months, although my counts were rising (77 to almost 300 at the time; 20,000 to undetectable)), switched to Viread + Epivir instead of the combivir, and dropped down to around 200 but still undetectable which means the drugs are doing their job. The main reason was fear of lipo, the excuse was anemia. But now I am scared again and thinking of switching again, there is so little info. I did feel better when I stopped the combivir, but it is the sustiva that can mess with the mind, although this is very subtle. I mean, hard to differentiate own problems from sustiva problems as they are all mental. Def though my dreams are a lot more intense but i had gotten used to that, and the initial period with sustiva, is really a time of adjustment, because it makes you awfully woozy and dizzy, to the point that you can't take it away from home. that subsided though. I was also warned by the docs i would vomit or have the shits from the combivir in the first month, but nothing like that happened. This is something to consider, as viread etc don't do that.

I wish I could help you more than that... my main concern is lipo and I am trying to dodge it (it might well be an unbased phobia, I dunno, hard to get concrete info). I do think the combo you're considering is very effective, i had also heard that combivir crosses the blood brain barrier and prevents dementia, but I don't know if this is rumor or not. As for the sustiva while it is sometimes hard 9when things are hard it intensifies tham, not unlike alcohol/weed), it's bearable. I mean I still enjoy life
hope this helps

[fred40]

I was on Sustiva/Combivir for almost a year in 2005.  I went quickly to an undectectable viral load and T Cells also increased well in the first three months.  Unfortunately,  I couldn't handle the side effect of severe fatigue.  I do know a few people on this combo and is working really well for them without any severe side effects.  Wishing you the best of luck.

Fred

[aztecan]

I've never taken Sustiva, but watched it turn a normal woman into a knife-wielding psycho.

I also have seen others have no side effects from it and continue to do well on Sustiva.

I have a relatively long history with Combivir. I took AZT and 3TC (Epivir) individually before finally switching to Combivir last year. I have been taking these drugs for 11 years.

I am now beginning to experience some lipohypertrophy and have had some degree of lipoatrophy for a while. Aside from that and being slightly anemic, I have not had any problems.

I should mention the lipoatrophy didn't start to show up until seven or eight years after I began taking it. For the record, my other med is Crixivan, which I have taken since May 1996.

As far as numbers go, I have been undetectable since June 1996, aside from a blip caused by a stupid phlebotomist. My last CD4 was 1,332.

Hey, the stuff works.

HUGS,

Mark

[BooBoo]

The first doctor I saw was going to throw in Zidovudine, but I had other thoughts about that shit, I've read some really HORRIFIC things about it.

I'm a little confused.......Zidovudine (AZT) is part of the combo that your doc is recommending.
Combivir = AZT + 3TC.

[Sonomabeach]

I have been on both but not together.  Actually, I have been on Sustiva consistently since 1998.  Trizivir was added last year which is Combivir with AZT added.  The AZT is destroying my face and making me sick, I throw up on a regular basis.

I was talking to our ADAP clerk recently.  He was also on Sustiva and Trizivir for a long time, feeling sick and wasting away.  His medical provider changed the Trizivir to Combivir.  He says no side effects.  His face is filling out like it was before and I want what Danny is having.  Have the best day
Michael

[BooBoo]

I have been on both but not together.  Actually, I have been on Sustiva consistently since 1998.  Trizivir was added last year which is Combivir with AZT added.

Actually Trizivir is Combivir with Ziagen added.

Combivir = AZT + 3TC
Trizivir = AZT + 3TC + Ziagen

[aztecan]

Hey Boo,

Yep, you're right on both counts.