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Author Topic: decision to make..need your advise  (Read 2480 times)

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Offline anniebc

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decision to make..need your advise
« on: May 11, 2007, 03:34:24 AM »
Hi everyone

I have been expecting this but not quite this soon.

My ID Doc put me on a drug holiday in December last year, after being admitted to hospital with sever stomach pains and  liver problems, my numbers were good, CD4 1080 and VL undetectable, and apart from the liver problem they worked really well for me..with no problems (or very little) in the way of side effects.

Feb 07..CD4 1080...VL undetectable..56%
March...CD4  950....no VL done...66%
April.....CD4  650....VL 33,800...57%
May......CD4 450...VL 77,000...63%

I don't think my numbers are too bad but my Doc is worried about the trend in my CD4's and wants me to start a new combo...Tenofovir, Emtriva and Reyataz, these drugs have just been approved here in NZ.

As you can see my % is really good but I would like some input regarding restarting meds, can I hold off for a while longer or is it advisable to start now rather than later?...also I'm a little worried about side effects or rather going through side effects again after being in control for so long..your advise on this would be really appreciated.

Many thanks and hugs
Jan :-*

-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline xyahka

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Re: decision to make..need your advise
« Reply #1 on: May 11, 2007, 03:53:21 AM »
Hi i don't know much about this but i think the longest you can wait is until having a CD4 of 200 or less... and according to the trend of your CD4 that might happen... next month.

i am not in meds so i guess others might give a better advice about it, i was just worry for the reduction of your CD4, make sure you take care of eating healthy, sleeping well, having everything clean, etc.  if you could control your cd4 a bit, you might wait longer before starting meds again.

lets see what others guys can tell you, and just relax, i am sure you will receive good advice here.
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Matty the Damned

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Re: decision to make..need your advise
« Reply #2 on: May 11, 2007, 06:21:09 AM »
Gah! Janno!

First up, I'd be interested to know what Gerry or Newt make of this.

It certainly is a bit of a bugger. Despite the decline in your absolute numbers, your percentage suggests that you may still have a bit of lee-way before restarting therapy. Which is certainly desirable considering your recent history of serious side effects.

If I were in your position I'd hold off and continue the month to month monitoring. At the first sign of a significant decline in CD4 % and/or a worrying increase in VL, I'd then restart HAART. I take reyetaz boosted with norvir, but as you'd know norvir can cause tummy troubles. I always tolerated tenofovir prior to my kidney problems. I've never taken emtriva.

MtD

Offline gerry

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Re: decision to make..need your advise
« Reply #3 on: May 11, 2007, 08:23:35 AM »
Hi Jan:

You started treatment right away after the exposure and you don't really know where you would have been with your viral load set point.  Now that you stopped treatment, it's likely that you are still going through a phase of establishing a set point.  The viral load rebound and subsequent decline in CD4 are expected; where this will settle toward a set point is anybody's guess.  The fact that your doc does monthly monitoring could help you establish this more precisely.  You do have time to think about starting treatment; it does not have to be a right now decision.

Also, have your liver tests normalized after the meds were stopped?

If you do start this regimen, you need to add Norvir to Reyataz if you are going to use tenofovir (due to drug interaction between Reyataz and tenofovir).  There is still a potential for this regimen to affect your liver, so that needs to be monitored closely.

Lastly, could you double-check the percent CD4 with your doc?  That trend is not making sense too much with the trend of your absolute CD4 counts.

Gerry

Offline JohnOso

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Re: decision to make..need your advise
« Reply #4 on: May 11, 2007, 08:25:02 AM »
Jan,

I'm feelin' for you sweetheart.  Those percentages are off the hook, but a rather sharp decline in CD4's over very few months indeed.  On the face of it, I'd be sorely tempted to play the waiting game for another month....but then...... :(

Seems analagous somewhat to a initial stages of HIV infection with viral load increasing and bump downward in CD4's.  But would (or could) the body try to fight and control the virus like it probably did during primary infection, with a slow rebound in CD4's?

I'd really be interested in what the experts have to say also.

I'm trying to remove myself from the situation a bit (as difficult as that is for me to do  ;)), and think out loud here, my dear.

You are in my thoughts,
John

Offline milker

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Re: decision to make..need your advise
« Reply #5 on: May 11, 2007, 09:45:29 AM »
Hello Jan,

those look more like CD8+ % than CD4+ % are you sure? Seems to me that next month will tell you if the VL log increases again more than 2.5 fold, or if it stabilizes along with the CD4. If not then the new combo may work better on your stomach, I hope!

Hugz  :-*

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline Robert

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Re: decision to make..need your advise
« Reply #6 on: May 11, 2007, 11:39:07 AM »
Hi jan.

Like the others have said, those %'s are out of this world.  Having your t-cells fall from 1080 to 450, I would expect to see the %'s at least in the 30's.  As Gerry said, you've never had a viral load set point so I guess now is the time.  The trend seems obvious, you're falling fast.  Wait one more month and get a confirmation of those %'s.  You're still well above the notorious demarcation line of 200.

As for the regime your Dr recommends ( Norvir, Reyataz and tenofovir), it's not a bad one.  That's what I take and I have no complaints.  Every 3 months the Dr looks things over and, liver-wise, no problems.  Depression rears its ugly little head far too often (but your alpacas should help that) and my cholesterol isn't so hot (213) and I am getting fat distribution issues.  Other than that, it's all fine and dandy (yeah, right.)

Good luck, dear.

robert
..........

Offline anniebc

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  • Posts: 5,942
  • AM member since 2003
Re: decision to make..need your advise
« Reply #7 on: May 12, 2007, 03:20:50 AM »
Hi there

Thank you all for your input and support.

The 63% was my CD4/CD8% ratio..my CD4 is 34% sorry for the confusion.

Gerry My LFT's settled back to normal about a month after stopping meds.

As for the Norvir (thanks for bringing that to my attention Matty), but if I remember right Norvir will boost the Reyataz but is normally used for those who have a high VL..mine is still <100,000 so the Reyataz should work fine for me on it's own..am I right in thinking this?

I will be waiting another month to see how my numbers go and then I think it will be time to make my decision...thanks again guys for your advise, as always it has helped me deal with a few things I was worried about.

Milker..My VL only increased by 1 log..not entirely sure what that means but it would seem I'm pretty safe for at least another month.

Hugs to you all
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Matty the Damned

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Re: decision to make..need your advise
« Reply #8 on: May 12, 2007, 05:14:04 AM »
As for the Norvir (thanks for bringing that to my attention Matty), but if I remember right Norvir will boost the Reyataz but is normally used for those who have a high VL..mine is still <100,000 so the Reyataz should work fine for me on it's own..am I right in thinking this?

I will be waiting another month to see how my numbers go and then I think it will be time to make my decision...thanks again guys for your advise, as always it has helped me deal with a few things I was worried about.


Janno,

As I understand it reyetaz (atazanavir) is only used on it's own in treatment naive patients. I asked the Fearsome Frau Eva about taking the norvir (ritonavir) component out of my regimen and she barked "Nein!" because I'd been on treatments previously, amongst other things.

Since you've been on HAART previously you may receive the same advice, but then again you could well get away with atazanavir alone.

For my part, I've found taking the atazanavir/ritonavir component at night helped deal with the nausea problems, but  as always that's just my experience.

Given your impressive percentage of 34, I'd think that waiting another month and then reviewing the situation is the right decision. Like Gerry says, you don't have to make your mind up straight away.

As always since you're not on therapy month to month monitoring is a must.

Much love,

MtD

Offline newt

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  • the one and original newt
Re: decision to make..need your advise
« Reply #9 on: May 12, 2007, 09:15:43 AM »
Hello Jan

what gerry and mTd said...

Boosted Reyataz with tenofovir
Tenofovir (Viread, one of the two meds in Truvada) reduces Reyataz levels by a lot, in most cases enough to make the end of dose concentration dangerously low, ie low enough to allow resistance to develop. So with tenofovir boosting Reyataz is essential. The makers of Reyataz issued a "Dear doctor" letter about this in 2003 (see eg here). 

1. But, some people (like, er, me! marvel at my Vermeer glazed eyes...) are natural preservers of Reyataz in the body (prob. because of a genetic liver thing...hmmm).  Therapeutic drug monitoring (drug level measurement) will tell you if Reyataz alone is sufficient to give an adequate day long level of the drug or if the Norvir boost is needed.  <<< you need to pay careful attention to the trough (end of dose, Cmin or Ctrough) calculation and note margin or error on time to make a good judgement. Exploring this prob. means starting on boosted Reyataz then taking out the Norvir for two or three days before making the drug level measurements. The empirical (gung-ho) approach is to go unboosted and see if you get a good virological response and your eyes stay a bit yellow <<< ongoing yellowing of the eyes correlates closely with adequate Reyataz levels, soz can't find the ref for the study report on this. Good news though is Reyataz/tenofovir together are particularly kind to lipids (for complicated reasons).

2. If you use abacavir (Ziagen etc), or even another, less kind nuke, instead of tenofovir then the boosting (problem) is avoided since the rest of the nukes don't alter Reyataz levels.

Emtriva
Emtriva is the big sister of 3TC (Epivir) and has a longer half-life. It gets the initials FTC. That's about all you can say on Emtriva.  Tenofovir and Emtriva now come in 1 handy 1 x day tablet (Truvada).

Logs and CD4s
A rise in viral load of 1 log is significant. The log value of undetectable viral load is 1.7.  Of 50,000, it's 4.7. So your viral load has risen 3 logs or thereabouts. Your CD% is very good (if it's correct, it looks kinda odd  :-\) and count, although it appears to be decreasing more than acceptable, so there's no rush to make this decision. Personally, I would deffo restart B4/close to my CD4 count hitting 350 though, regardless of CD4%. Viral load wouldn't come into the pic really, but how I feel, tired? under the weather? etc would.

Just a last thought, nearly everyone I know with hepatitis coinfection is on this combination, partly because it is comparatively gentler on the liver, having only 100mg Norvir for a boost.

All the best to llama land

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

Offline RAB

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Re: decision to make..need your advise
« Reply #10 on: May 12, 2007, 10:03:33 AM »
Hey Jan

I missed this post.  Typically I'd go over the worry edge but I know you're in good hands with your doc and the great advice you're getting here.

No need to rush back to treatment, but definitely do the monthly monitoring.

I also totally agree with what Matt said:

Quote
Personally, I would deffo restart B4/close to my CD4 count hitting 350 though, regardless of CD4%

RAB

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: decision to make..need your advise
« Reply #11 on: May 12, 2007, 11:12:59 AM »
Jan, my love,

What Matt, RAB and Newt said. Have a little heart-to-heart with your doc regarding the Ritonavir boost for the Reyataz because of the Tenofovir.

Do not take it without the boost, lest you set yourself up for failure.

Also, Thanks for the explanation regarding the percetages. Had me totally baffled because I'd never  seen percentages like that before (and I'm old!!!!)

I am so foggy right now I can't see straight. Damn this sustiva. I long for the ease of taking Crixivan again.

Oh, like others said, I wouldn't  let your absolute CD4 drop below 350 before starting meds again. The way your numbers are going, I would be very nervous doing that.

HUGS HONEY,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline blondbeauty

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Re: decision to make..need your advise
« Reply #12 on: May 12, 2007, 11:31:38 AM »
Hi Jan,
I understand from your posts, your main concern was the liver problems your meds caused. Tenofovir and Emtriva are not bad for your liver but I think Reyataz is. Why don´t you try something different to reyataz. Maybe Sustiva? Sustiva and Truvada is my combo and I am extremely happy with it.
See these links:
http://www.thebody.com/Forums/AIDS/Meds/Current/Q183563.html
http://www.thebody.com/Forums/AIDS/Meds/Archive/SideEffects/Q183381.html
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline gerry

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Re: decision to make..need your advise
« Reply #13 on: May 12, 2007, 01:03:44 PM »
Hi Jan,

A CD4 of 450 and 34% is really pretty good, considering that you are only on your 4th month of stopping meds and we don't know just yet where your viral load set point will settle.  There is still a possibility that it will rebound as your immune system equilibrates with your viral load.  The monthly monitoring helps with this.

The other problem to contend with is your liver enzymes got abnormal on just the abacavir/3TC even though you were maintiaining undetectable viral load through out treatment.  You know now it's the meds because the liver tests returned to normal after stopping.  So the challenge is to find a combo that will not result in the same problems.

As for ritonavir boosting of Reyataz, it is important to do this when using with tenofovir because like Matt said, tenofovir causes a fairly significant drop in Reyataz levels.  So the reason behind this is not related to higher vs lower viral load or being treatment-naive vs. treatment experienced.  If you use Reyataz with NRTIs other than tenofovir, then unboosted Reyataz may be an option for patients who are PI-naive.  That may have been an option if you could go back to abacavir/3TC, but that was the combo you had to give up on because of the liver issues.

Considering the side effect issues, I would think that it's prudent to wait and monitor your numbers closely.

Gerry

 


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