First day of Reyataz, Norvir, and Truvada

[accord]

After looking at the threads I have not seen a whole lot of information about this combination.  I just started treatment today.  I have felt incredibly warm all day.  Its not warm out so I am sure its the meds.  lol.  Just thought I would see if others had taken this combo and what type of experiences they have had. 

A little about myself...  This is the first time I am on treatment.  I am in overall good health with a high cd4 count and chose to participate in a study.  I was relieved to be chosen to go on meds because I was nervous about being deferred.

[leatherman]

After looking at the threads I have not seen a whole lot of information about this combination.

one thing to remember about a support site like this is that if you're not hearing a lot about a situation or regimen, it's because it's rare or rarely a problem.  Things that are a problem get talked about a lot and things that aren't a problem don't get much said about them.

Also don't forget that many people often have mild side effects to many regimens within the few weeks or so. Antiretrovirals are serious medications and it would be silly to think that your body wouldn't exhibit some small issues as your body adjusts to these new chemicals - not to mention the change of the diminishing viral load as the meds do their thing against HIV. Don't misunderstand me, I'm not putting down your possible side effects; but I am saying that having side effects during the first days is normal. However if they are extreme or continue for too long (as in longer than 2 weeks), then of course medical help should be sought out; otherwise the effects are just something that go along with the serious change going on in your body.

I've been on various meds for 19 yrs, and R/N/T has had the least side effects and has given me incredibly stable numbers for well over half a decade, so you'll hear no complaints outta me for this regimen - and only praise about the regimen when someone else brings it up. 

what sort of study are you participating in, if you don't mind me asking? My first late partner particpated in some early trials, but I'm not enough of a gambler and am leery of being a part of most studies.

[Ann]

Were you warned about the possible yellowing effect of Reyataz? It's nothing to worry about, but it can be alarming if you're not expecting it. It doesn't happen to everyone, but when it does, it usually occurs after you've been on the meds for a few weeks. It normally only makes the whites of your eyes tinged with yellow, but some people find their skin goes a bit yellow too. It's temporary, lasting anywhere from a few days to around two weeks.

Again, it's nothing to worry about but it can be alarming if you aren't forewarned.

You can read more about all the meds you're on in the Drug Info pages elsewhere on this website.

Hang in there.

[alberche]

Dear Accord, I was on this same combo during 3 and a half years with no major complaints. My first treatment was Atripla, at that time, Sustiva+Truvada, since the single pill was not yet approved. But my doc switched me to Rey+Nor+Truv because of an allergic reaction I had due to Sustiva. So I was on R+N+T since mid 2006 until jan 2010.

The only issues I remember in the very first weeks were a littile burden in my stomach, some mild rash, and that's all. From that time on I noticed my skin tended to dry more than it did before, particularly in the face (front and areas around the nose), in my arms, and in the upper side of feets (I don't know the english word for that -the part you use to hit a soccer ball, let's say). I have solved it using hydrating creams daily (the normal kind of hydratants you may find at the supermarket). Also, from time to time I hade some digestive issues and short diarrhoea-like sympthoms that went away as fast as they came. I could cope with it with no problem at all.

My doc said to me when starting R+N+T that I could also get a yellowish skin due to the increase in bilirrubin (indirect bilirrubinhemia), but that it will not have a bad effect in my health. But the fact is that I did not get yellow at all. Or at least, not to a degree me or other people could appreciate. Some people here in the forums say they got a kind of tanned tone that could perfectly pass for having spent a couple of days on the beach.

In general, from my experience, I can tell you it is a good combination of meds and very firendly as per side effects. It is also easy to take: all pills, all together, with some meal -better a complete one, but  some brunch also suits well-, once a day (be consistent taking them, and try to respcet your pill time as much as you can: everyday at the same hour)

Maybe there is one topic you and your doc should pay attention to follow up: in 2009 I was tested for bone density and the results were I have a certain degree of osteopenia (loss of bone density). My doc said it could be due to the tenofovir contained in Truvada, but said also that many HIV+ people develop osteopenia even when taking other meds, so she appointed me for a new bone density test by the end of this year to see whether it has progressed or not. Recently, some studies have shown that it seems to be HIV itself that may cause the most of bone density loss in the very first months after infection, thus, before most of people is started on meds. In the same way, some studies suggest that tenofovir in Truvada may play a role in bone densitiy loss, but it is no so clear. So, maybe controlling every couple of years your bone density could be a good advice. Also, drink 2 litres of water daily, it will help your kidneys to better deal with tenofovir and will prevent kidney stones.

By the way, I was siwtched from Truvada+Reyataz+Norvir in feb 2010  to Truvada+Intellence due to I entered in a clinical trial to evaluate whether Intellence (Etravirine, a non nucleosid analog transcriptase inhibitor) could be taken once a day instead of twice. As it got good results, my doc keeped me taking Intellence even though trial has already finished (trial lasted 12 months). But, in my last visit, my doc finally also switched me out of Truvada, not because bone density issues or any other side effects, but because here in Spain meds and labs and hospital care is free of cost and universal, but with the economical crisis governement is looking for savigns everywhere and cutting costs, also in healthcare, so, as I am undetectable since the beginning, and very high on CD4s (a mean of 1500 during the last 4 years) and have had no major complaints, and tested negative to Abacavir sensibility, now I am on Kivexa (Epzicom in the US: 3TC+Abacavir) plus Intellence.  So far, the first effect is that it costs the half of Tru+Rey+Nor... I hope this combo does so well as Rey+Rit+Tru... did for me.

hugs 

[accord]

Thanks for the feedback.  I will attempt to answer questions via smart phone so ii apologize if I use bad grammar.

I am aware that the side effects listed are generally rare but was still surprised to find a lack of discussion.  Too your point Leatherman, I know that all stories are personal and I may never experience any of them.  As for how I am doing, I feel much better than expected.  All the doom and gloom are clearly unique to each individual but it is still way to early to know what's next.

The study I am enrolled in is called START.  I know there is a lot of information about it out there.  I have a cd4 over 800 so I qualified and was randomly selected to start early.  I guess I felt it was a small token to hopefully improve someone else's life down the road.

Ann, yes I have heard of the possible yellow eyes and skin changes.  I have felt very lucky to have had the opportunity to discuss my treatment with my ID Dr, pharmacist, and study tech to go over the many possibilities.  I am definitely planning to drink more water since I have heard that may help with the discoloration and kidney stone concerns.  I am told this may help. 

Alberche, thanks for sharing your story.  I feel like it is easier for me when I hear many of the roads people have taken. Often times feels like every path has its own positives and negatives which are possible so hearing others stories is encouraging.  Everyone finds there own path but its definitely nice to hear others stories.

Crossing my fingers this all makes since.  Lol. Thanks again.

[leatherman]

was still surprised to find a lack of discussion

take that as a good sign then that the lack of discussion here probably just goes to show how rare the problems are with this regimen.

The study I am enrolled in is called START.  I know there is a lot of information about it out there.  I have a cd4 over 800 so I qualified and was randomly selected to start early.  I guess I felt it was a small token to hopefully improve someone else's life down the road.

kudos to you for the important work that you are now a part of.  Best wishes with the regimen and the study!
(over 800?  that's nearly 4X what I've lived with for over 20 yrs. lucky dog. )

[geobee]

Hey Accord --

I'm on that combo.  R/N/T once a day in the AM with food.  Easy-peasy.  My doc suggested 1200Mg of Vitamin D with Calcium for possible bone issues down the road and I also throw in a multi-vitamin for good measure.

I got a little yellowing of eyes and skin in the first couple of months.  My skin is still a little more yellow than it would be otherwise, but this could be all in my head.  Probably is.

Like you, I was an early starter, involved in a study (at SF General).  Anyway, this has been super-easy for me.  Hope it goes as well for you.

[leese43]

Hi Accord,

I'm also on that combo and apart from some hair loss in the first few weeks, I've had no problems so far. I started taking them last summer.

Leese 

[Ann]

It's very true that the less you hear in these forums about a particular combo, the easier it is to take. People only post when there's a problem.

Hang in there, you're gonna be ok.

[eric48]

Scheduled switch (aka induction-maintenance)
****************

I found alberche's contribution very interesting because it falls in line with the concept outlined by some german scientists and that I have quoted here:

http://forums.poz.com/index.php?topic=33062.msg465091#msg465091

If I had known better about meds (and if I had ammunition to discuss/confront my doctor on his initial recommendation) I would have opted for something highly efficient and easy enough to initiate on, and, then, schedule-switch to something very easy to take and maintain (including considerations on cost and long term SE - due to my profile - older, pre-diabetes, nonsmoker, etc)

I have also noticed, siding by Ann's comment, that a number of combos, eventhough widely used, hardly ever get negative comments on the forums.

Complaints are either about:
- initiation failures (Side Effects, virologic failure, etc.)
- maintenance issues (longer term SE, cost.) (while people complain about limited insurance coverage there are relatively few comments on costs in itself)

The routes followed by patients reflect the drug development history or are changed just by chance.

I was nervous about being deferred.

same here...

If better strategies can be designed, especially towards cheaper and safer maintenability, there would be less (economical) restrictions on people willing to start earlier

That being said, many, many people are happy with their first line treatment.

And I dearly hope that you will also

Cheers!

Eric  

[ad2san]

Hi there, the combo is easy to take, no big side effects except as Ann mentioned the yellowing (that does decrease after a couple of weeks) and higher billirubine than normal.
I had the bone issue and broke a knee after 6 months by just falling of my own heigh ! This is a Problem linked to Truvada. I also had terrible gas from Truvada, not a big issue but very discomfortable when in a meeting :-)
My doc switched Truvada to Kivexa and it is a lot better on the gas side.
Oh yes, I had also terrible problems sleeping, although I take the pill in the Morning with breakfast. I was also waking up very often to go to pee, this never happened to me before I started the table. With Kivexa it is a little better but I am still under sleeping pills.

Cheers

[antibody]

I switched to this combo back in March of 07 and haven't had one single side effect or bothersome issue yet but I'll let you know once I do...Oh and I'm UD and have some 1800 plus Tcells.

[buginme2]

I switched to this combo back in March of 07 and haven't had one single side effect or bothersome issue yet but I'll let you know once I do...Oh and I'm UD and have some 1800 plus Tcells.

1800 T cells. Wow!

[alberche]

Dear accord, "no news is good news", as Ann and Leatherman say. Try to get a bone density lab every two or three years and follow your doctor's indications. As long as your lab results are good, the most probable is that you will be in this combo for some or many years to come.

Dear Eric, I've just read your thread and I am basically agree with you.  Sometimes we worry about  thinking we could be taking a better med or something more recent or new. I must say that when my doc proposed me a change from Truvada to Kiveza (Epzicom in the US), knowing all that has been published about Abacavir... I felt a little worried... now I hope this will go OK, but sitll, I must confess, I'm a bit worried, as I am in the very first weeks with it.

On the other hand, I am doing very well on once a day Etravirine, which should be, I guess, very similar to take Viramune once a day. I do not know if its suitable for everyone, so, once again, your point on the importance of that your combo works well for you is a good one.

As all my experiences with meds until know have been with once a day combos (and maybe what comes next could be good for opening a new thread), I have done very well so far in terms of adherence and compliance.

But, sometimes, I wonder myself whether I will also do so well if things change.

More and more people recently infected or recently diagnosed are not "ill", I mean, they (as it is my own case so far) continue to have their daily routines as before: they keep on work, cope with family, children, studies, etc., etc., and they are healthy enough to do so. I mean, there's more and more people that does not spend all the hours of their days dealing with HIV. Easy once a day combos, and pills incluiding two or more meds, have had a lot to do with this better quality of life.

But, how will this new generation of HIVers (in wich I could include myself) deal in the future with the need of more complicated treatment options due to side effects, meds interactions, unexpected coinfection with Hep C, adherence/resistance issues... or, just simply the return of some of the old glories as first or second line options eseentially due to they are cheaper?

[terrysenc]

I am currently taking this combo.  It has been a very tolerable combo, I never experienced any yellowing of the eyes and skin, but when I first started taking it my skin did get really really dry especially my face and lips.  Almost painfully dry I got some good skin moisturizer that helped.  Thankfully though for me the dryness only lasted about three weeks then I was back to normal.  Other than that though it has been a good combo.  However my doc is wanting to take me off from it because Im not achieving a undetectable viral load.  I have been on it for about 1 1/2 years.  I will be going on Atripla as soon as it arrives in the mail. 

[camille07]

I'm currently taking this combo, without any major side affects.  However, I still get a slight yellowing of the eyes, even after 2.5 years.  The doctor says it's just the bilirubin. I take a couple other medications which also elevate the  bilirubin. 

I pray that this is my combo for a long time, since it's working out to be a nice relationship.

Best of luck,

Camms