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Author Topic: Starting Treatment Next Week  (Read 6336 times)

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Offline Londonguy

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  • Posts: 104
Starting Treatment Next Week
« on: June 03, 2006, 12:11:53 PM »
Hey guys, you seem like a nice group of people, hope you can give me some advice.

I'm 20, been diagnosed for a year and currently have a CD4 of 188 and a VL of 37,000.  I'll be starting treatment next Thursday and have been given a lot of stuff to read to help choose what I take.  I'm basically trying to choose between Sustiva and Truvada or Sustiva and Kivexa (I believe it's called Epzicom in the States).

This has presented me with quite a dilemma.  There seems to be a suspicion that Truvada may be problematic for the kidneys.  On the other hand Kivexa presents the possibility of a severe allergic reaction.  What a choice!

Since I'm living at home and haven't told my parents about my status (and have no plans to at the minute, it would be a nightmare), the thought of getting an allergic reaction is wholly unappealing because it would be extremely difficult to explain away.  This is causing me to lean towards Truvada, but the kidney worry is in the back of my head.  So if you could help I have a couple of questions

If the Truvada did present me with kidney problems, would stopping the treatment allow my kidneys to recover or would it be permanent?

In this event would I be able to switch to another option from the NRTIs?  I'm kinda scared of being ruled out of a whole class of drugs.

I know I'm probably worrying over nothing.  I know Truvada and Sustiva is highly recommended as a first line HIV treatment but the thought of permanently damaging my kidneys has me concerned.

Many thanks for any advice you could give.

Offline Cliff

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Re: Starting Treatment Next Week
« Reply #1 on: June 03, 2006, 12:46:02 PM »
Truvada will only be a concern with your kidneys, if you already have some sort of kidney impairment.  If you don't, then you shouldn't have any problems.  Truvada is a very popular drug and works well for most individuals.  Issues with kidneys are, thankfully, rare.

Don't read too much into the side effects and potential problems with the drugs.  Yes, they do exist but problem is all HIV meds have their share of problems, (they all can potentially impair an organ, whether its your liver or your kidney).  They all may cause an allergic reaction (of course, some more than others).  So if you're looking for that perfect combo that has not had any issues with liver, kidneys, potential allergic reactions, or any other harmful condition, I'm afraid that you will be searching, fruitlessly, for a very long time.

Good luck.

Offline kcmetroman

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Re: Starting Treatment Next Week
« Reply #2 on: June 03, 2006, 12:51:03 PM »
Hey London,

I think that the Truvada/Kidney issue is a bit overrated.  I have been talking to my ID doc about changing over from Combivir.  My concern with the Combivir was Lipo as well as possible anemia (along with the fact that AZT scares me).

Well, when I was diagnosed in the hospital last year, they found out that I was born with only one kidney.  My doc says no problem.

Offline Blixer

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Re: Starting Treatment Next Week
« Reply #3 on: June 03, 2006, 01:38:08 PM »
Both combos are very good I think.  I didn't have an allergic reaction to the Epzicom, but I did have a reaction and after 17 days had to stop it.  In retrospect, I wish i would have started with Sustiva and Truvada.  At any rate, as has been mentioned, don't read too much into the side effects.  I have had no ongoing side effects from the Sustiva.  I don't even get the vivid dreams.  I have had muscle pain from some others, but after about 3 weeks that seems to be starting to resolve.  They say the first week can be really rough for some and even up to a month.   But everyone says it does get better.  And I can now say that same thing.  Good luck!
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline newt

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  • the one and original newt
Re: Starting Treatment Next Week
« Reply #4 on: June 03, 2006, 01:59:56 PM »
Hey, hello London from sunny, sunny Brighton

Sustiva is a popular and effective first-line drug, but it can screw your head at the beginning: be prepared.

I, personally, would start with Truvada rather than Kivexa because both Sustiva and the abacavir in Kivexa can cause a rash, it can be hard to tell which is behind it. The comments from others on Truvada and kidneys is sound. Your clinic should so a urine dipstick test before you start (for creatine and glucose), just to check your kidneys are okay & then every time you go for a check-up. If you do start Kivexa, be aware of the signs of abacavir hypersensitivity reaction.

I am surprised no PI option.  Did your doc discuss the advantages/disadvantages of NRTI v PI combos, or just annouce it would be Sustiva? Reyataz, a once-a-day PI, is popular in London...... If Sustiva turns out to be no good, then I guess the docs may be reaching for this, or perhaps Kaletra, as an alternative.

Telling your family is a whole other issue - but, unless you are lucky, it is kinda hard to appear normal on Sustiva for the first 2-3 weeks.  And the same may be true of other combos, for different reasons, eg food restrictions. 

I was chatting with some friends about "non-disclosing" first-line combos, and we concluded Reyataz/Kivexa is the best current one cos the chance of side-effects at the beginning are least, n the packaging is small, no refridgeration is needed & you avoid the "non-food before bed" question that you get with Sustiva (eating food, esp, fatty stuff before taking it increases side effects).  But...but, but, starting combo has the potential, cos of side effects and, er, the drugs being discovered, has the potential to disclose yr status for you.  It may be an idea to think about how you are gonna handle this before you start off on your combo journey.

Good luck, let us know how you get on

- matt

PS: if you doc says something like it HAS to be Sustiva & you MUST tell your parents, this is wrong, kick him
"The object is to be a well patient, not a good patient"

Offline Londonguy

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  • Posts: 104
Re: Starting Treatment Next Week
« Reply #5 on: June 03, 2006, 02:45:18 PM »
Lol many thanks for your replies  ;D

Reckon it's going to be Sustiva and Truvada then.  It's sometimes hard before you start not to envisage a worst case scenario where you get fat redistribution, a damaged liver, damaged kidneys, constant diarroheah and nausea   :o But then if I thought I was going to get all the side effects of any given medicine then I'd never take anything!  There doesn't seem to be any compelling evidence that Truvada is extremely damaging to kidneys, just odd stories around the net.  But I bet you could find adverse reactions to just about anything out there.

In response to the poster above, my Doc basically gave me three choices - Sustiva with Truvada or Kivexa, or one of the protease inhibitors (I can't remember which one) boosted with ritonovir, and taken with something else which I can't remember either.  I know I didn't pay much attention because when he told me I'd be taking more tablets I kinda dismissed it straight away, and I believe the fat issue is more likely with PIs.  I'm not a good taker of tablets so if I can limit it to two a day then I'd be very happy.

Yeah I'm aware of the potentially Sustiva problems as well, sounds interesting to say the least.  I've been thinking about my behaviour maybe making my parents suspicious, kinda scary.  I don't see them for most of the day so I'm hoping that if I take my tablets at night, by the time I see them the next evening I might not be as bad.  All ifs and buts obviously but if I'm not optimistic then I'd probably cry lol.

Oh and if anyone could answer this for me I'd be very grateful (I know I could ask this to my Doctor on Thursday but I'm notoriously impatient!)

If I wanted to switch the time I took the meds in the future, would that be possible?  I plan to take them at night to begin with because of the potential effects of Sustiva, but when (if) I adjusted to them I think I'd prefer to take them earlier.

And related to that is, how much of a window do you have with regards to timing of the pills when you have settled on a time?  I have every intention of adhering and trying to take them as close to the right time as possible, but I'm sure you all know that life sometimes get in the way of perfect timing.  What sort of ideal timeframe are we looking at - an hour either side of the time for example?

Many thanks again.  It's a bit of a daunting time and even though I've done lots of reading there still seems to be things that I can't find answers to in the material. 

« Last Edit: June 03, 2006, 02:48:36 PM by Londonguy »

Offline Blixer

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  • Posts: 712
Re: Starting Treatment Next Week
« Reply #6 on: June 03, 2006, 03:25:10 PM »
Londonguy, my doc has no problem with an individual making a switch in the time they take the meds.  I started at night and changed to morning. I found that even the sustiva taken in the morning didn't bother me and then I was done with the meds and didn't have to worry about a night out or eating late or anything like that.  And in terms of a window, well, the sustiva has a very long half-life.  My doctor said that on a once a day regemine you could consider a 4 hour window reasonable.  Even more is probably okay, but he suggested being as close as possible but not to let it drive my life.  Right now I take my meds at 6 AM.  But if I want to sleep in till 8 or 9 one morning, no big deal.  The issue of exact timing becomes more important with meds you have to take more than once a day.

Hope this helps.
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Londonguy

  • Member
  • Posts: 104
Re: Starting Treatment Next Week
« Reply #7 on: June 03, 2006, 03:33:47 PM »
That helps a lot, thank you very much.  A lot of the literature kinda makes you think you have to be within a millisecond of the correct time  ;D I can understand why they do that as saying otherwise could allow people to become too lax, and as you say multiple times a day routines are probably stricter in that regard.

Thanks a lot, I'll report back when I've started taking them, possibly in a Sustiva induced haze  :o

Offline newt

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  • the one and original newt
Re: Starting Treatment Next Week
« Reply #8 on: June 03, 2006, 03:39:39 PM »
Several questions and some answers:

1. Fat issues: PIS and fat gain is an urban myth. No-one actually knows which meds exactly cause fat gain.  People get it on Sustiva, people get it on PIs, most people don't get it. Historically, the arrival of Crixivan (an early PI) and lipo co-incided but it's just co-incidence.  Different people react differently. Fat loss: well that's d4T and AZT mainly. Sustiva often raises your triglycerides, a blood fat, which increases your risk of heart attack.  The main-line PI Kaletra can also affect (other) blood flats (cholesterol).  Reyataz, which I am sure is the one your doc offered you, does not do this very often.

2. Mornings can be foggy on Sustiva, but not, er, incredibly and unbelievably so.  Drinking on it can bring on a mutha of a hangover...

3. You should be able to switch any of your meds in the future provided you haven't developed a resistance. The only two reasons you might develop a resistance are if (a) you are flaky about taking the meds (b) there was one present already, perhaps not detected, that emerges on treatment.  Even so, you will have many. many options.

4. THERE IS NO POINT TOUGHING OUT A BAD SIDE EFFECT if a swtich is possible and this will make life and taking the drugs easier. 

4. Timing: Sustiva/Truvada, you're dead lucky.  Sustiva stays in your body at a high enough level to supress the virus for a looooooooooooong time, like at least 5 days. So take it once a day, don't worry about the precise time.  And don't fret too much if you skip a day (forgot, wanna clear head for a night...).   Likewise, Truvada, the two drugs are long-lasting, and a few hours +/- ain't gonna matter.

This is not a recommentation to skip doses.

5. Some lucky people can pop Sustiva down like Smarties and not notice diddly-squat. Most people find it workable. You will know after a month of so if Sustiva is viable for you real-life wise.  At the beginning, expect to bump into things etc.   If you drive, I suggest caution on that for the first 5 days. Down the road, when your viral load is undetectable, it is worth reflecting on whether you wanna stay on it. If you think it has affected your mood long-term, there will be lots of alternatives.  Days of choice, something of a luxury.... But it may well settle down and be easy.

- matt

Now playing - If You Want Love : Black Eyed Peas
« Last Edit: June 03, 2006, 03:45:12 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Dachshund

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  • Posts: 6,058
Re: Starting Treatment Next Week
« Reply #9 on: June 03, 2006, 04:11:30 PM »
Dear Londonguy,

I have been on Sustiva/Truvada gosh I guess three years now with excellent results. My side effects have been minimal,but I do have some. Fatigue seems the worst but I handle it by not overdoing it if I am tired. I am also an old fart so I am sure that contibutes. The squirts are a pain...I just make sure I have completed my morning B.M. before I leave the house. Your body will let you know. One thing everyone seems to experience are the wild Sustiva dreams when you first start the med. They will subside. I like the ease of two pills every evening before bed. I've taken them on a full and empty stomach...drunk and sober...you name it. My test results don't vary. You will figure out what is best for you.

If not family I hope you do have some type of support available to you. You might need it. Good luck mate, we are here for you.

Hal ;)   

Offline BrooklynGuy

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  • Posts: 49
  • Tomorrow is not a promise, it's a gift.
Re: Starting Treatment Next Week
« Reply #10 on: June 03, 2006, 04:44:12 PM »
I was diagnosed 6/05 and started on meds (Epzicom and Sustiva) 7/05.  My baseline counts were Cd4 30/VL 650,000 (I was RELLY sick).  My last appointment my counts were CD4 281, VL UNDETECTIBLE!  Yeah!

No particular side effects.  The Sustiva actually acts like a nice sleeping pill (without the lucid dreaming) and I was a bit hypersensitive at first on the Epzicom but that passed pretty quickly.  All in all, it's been a wonderful combo for me.

Good luck on your med start!
Infected:  Probably 1995
Diagnosed: June 2005
Baseline VL: 650,000
Baseline CD4: 30

Last Dr. Visit: 12/2013
VL: Undetectable
CD4: 700
Meds: Complera

Offline LACboi

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    • FaceBook
Re: Starting Treatment Next Week
« Reply #11 on: June 05, 2006, 04:55:13 AM »
Hello Londonguy,

I take epzicom once a day and have never had a bad reaction. The hypersensitivity which starts with a rash a severe rash happens only in a low percentage of people, I think around 10%, but if you don't have a reaction within 6 weeks you won't have at all and you will be fine. I hope this helped you a bit in your decision.


Offline Rob - Dublin

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  • Posts: 51
Re: Starting Treatment Next Week
« Reply #12 on: June 05, 2006, 05:02:23 AM »
Hi London Guy,

While I cant offer any help or advice on the meds (just yet anyway!). Good luck with it and keep us posted on progress and if we can help, just ask..

14 Dec 2005 Tested Neg
21 Jan 2006 Infected
09 May 2006 Tested Poz
29 May 2006 CD4 551  (33%) VL 21,000
10 July 2006 CD4 632  (34%) VL 24,500

......when i'm good, i'm very good - when i'm bad i'm even better......

Dream as if you will live forever - Live as if you will die today.....

Offline Optimistic

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  • Posts: 326
  • An Apple A Day Keeps The Doctors Away!
Re: Starting Treatment Next Week
« Reply #13 on: June 06, 2006, 06:48:40 AM »
I can't really offer you any advice because I am not on meds yet, but I do want to wish you Good Luck with it. 

12/06 (Atripla): cd4 - 260; cd% - 33%; vl - 169
1/07 (Atripla): cd4 - 267; cd% - 38.1%; vl - 132
4/07 (Atripla): cd4 - 373; cd% - 33.9%; vl - <50
7/07 (Atripla); cd4 - 287; cd% - 35.8%; vl - <50
9/07 (Atripla); cd4 - 356; cd% - 39.5%; vl - <50
12/07 (Atripla); cd4 - 517

Offline allopathicholistic

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Re: Starting Treatment Next Week
« Reply #14 on: June 06, 2006, 07:40:01 AM »
or one of the protease inhibitors (I can't remember which one) boosted with ritonovir,

I wish you good luck in the area of telling (or not telling) your family. Should a day ever arrive where you need ritonavir , know that it has to be protected from heat - thus it goes in your refrigerator which might spark some inquiries


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