Very disappointing 1st Labs - Should I be alarmed??

[BeachNYC]

I started Truvada, Reyataz and Norvir on May 13 (I'm resistant to all non-nukes, though this is my first regimen.) First labs were taken May 30, and I received my results today. CD4s dropped from 186 to 117, VL increased slightly from 52,000 to 56,000. I am so disappointed, especially after having read so many posts explaining that these drugs do most of their work in the first few days or weeks. My doctor says that he is not alarmed (he is a prominent HIV Specialist here in New York City), that he's seen it take a while for the drugs to kick in. He took my blood again today, and said we'd look at it again in a month, and decide how to proceed from there. He is also doing another resistance test.

But I'll be honest, I'm really scared. I have tolerated this regimen extremely well, but maybe that's because they're not doing anything!

Do others in these forums have any idea as to just how concerned I should be? I know that I should trust my doctor, he does this stuff all day long, but I just had such very different expectations.

Any help will be appreciated.

Thanks,

Robert

[Christine]

Hi Robert,
Try not be to concerned over one test result. It is the over all trend of your labs- t-cells, vl, and especially the %. Some people respond slower to the meds. I think your doctor is right on target. Another set of labs, then make any decisions then.

For now, try to keep stress levels low (easier said than done, I know), eat healthy foods, get plenty of sleep, and if need be go talk to a counselor or a group. Hang in there.
Christine

[lydgate]

Hey Robert,

Totally agree with Christine. Also, there's no real difference between your viral load numbers; they're essentially the same. In fact, given that your first VL was roughly 50K, for the next result to count as biologically significant, it needed to be below 17K or above 150K -- i.e. changed at least by a factor of three, either up or down. (This is what the scientists call "assay variability.") As for CD4, the more important number is the percentage rather than the absolute count, which can vary a lot. The percentage tends to be more stable over time and its trend upwards or down is a better marker of your immune sustem's health. So the Science behind the two sets of numbers is telling you: don't worry, certainly not yet. And try to remember that some people respond to meds, of whatever kind, really quickly and other people take a bit longer.

Hope that helps somewhat. If you're still feeling mega-stressed, consider asking your doc for a short-term prescription to an anti-anxiety medication. I certainly did after my diagnosis, and it helped me (but then, I'm pretty comfortable popping pills for any kind of pain).

lydgate

[dirtycar74]

Levels, especially VL and CDx counts, can vary so widely that the difference between tests (exact numbers, not percentages) can almost be irrelevant.  It's the trend that the doctors are basically after.  The first pre-HAART lab should give you a "before" picture and the rest will be kinda like benchmarks to let you and your doctor monitor your progress toward the eventual goal (being undetectable)...  Non biologically significant fluctuations of cell counts, etc (less than a three-fold change in either direction) in a single event, without severe negative episodic symptoms, shouldn't be much of a worry, as far as I understand.  But then again, I'm no doctor. 

If you have a good doctor, and you trust him or her, I'd highly recommend you talk this whole thing over with him/her.  Also I highly recommend you think about seeing a Social worker or therapist (no, they're not just for the crazies, you know!) if your medical coverage provides it.  Kaiser (my plan at least) does, and I have taken myself into the SW to chat when I was overly worried and stressed out.  I also recommend consultation with a dietitian and pharmacist as well since some treatment regimens can make drastic changes to your appetite and your diet can be adversely affected.  It's no fun to get sick from the pills you have to take to keep you from getting sick!  Just my $0.02 here though...

[newt]

Hello Beach

This is a pain in the arse set of numbers

Viral load results vary by a factor of 3 - could be 3 x greater or 1/3 - this is the limit of test.  You nos could mean that the first set was higher, up to 150k and the second set lower, down to 15k, which would be right given your few weeks on meds.  But there's no way of telling.  Pain the arse. (It's unlikey to be the other way round - first result lower, second higher - even if you had some undetected nuke/PI resistance, you would expect some downward movement at the start of treatment. 

Get a retest.

- matt

[jjmcm]

Hi Robert.

I agree with the other posts.  Your VL is a wash and remember your CD4's take a while to recover. It may take 2-3 months before you see a floor develop from where you are now.  I agree with your doctor on the first line of therapy.  It is very popular because of the limited side effects of Reyataz.

However, Reyataz, is by no means the strongest agent you have to use.  If you don't get the results you need, it could always be replaced with Kaletra or even Kaletra with Invirase.  I think you will find they both will make you undetectable in virtually no time.  And, it would likely stay that way for years.  Once your virus is snuffed down to undetectable, your CD4's will begin to rise.

BTW, make sure and not take any antacids in close proximity to the Reyataz or Proton Pump Inhibitors like Prilosec while on it.  It reduces the effectiveness.  My doctor didn't mention this at first, but I discovered it myself.  I want my meds to perform as well as possible.

Good luck,

--JJ

[allopathicholistic]

make sure and not take any antacids in close proximity to the Reyataz or Proton Pump Inhibitors like Prilosec while on it. 

and if you ever have to take azithromycin a.k.a. zithromax, "Zmax", Sumamed - don't mix with antacids. 

[newt]

However, Reyataz, is by no means the strongest agent you have to use.

96 week data showed Reyataz to be a least as good as Kaletra.

Atazanavir/ritonavir as potent over two years as Kaletra, but has better side-effects profile

- matt

[doyourowndamndishes]

And I can vouch for Matt.  I was on Kaletra and Trizivir which really buggered up my entire lipid profile.  I switched Kaletra with Atazanavir + ritonavir boost.  It helped a bit but the ritonavir keep playing with the lipid profile as well.  Once I dropped the ritonavir, within 2 months the lipid profile (hdl, ldl, tryglicerides) all dropped well into the low normal/low healthy range.  Even my doctor was surprised at how quickly things leveled out.  Further, both he and I knew that this was due to Kaletra and not my diet or any other factors that I could control. 

Regarding the others advice, ya, it's the trends that really count.  If after 3 or 4 lab results you still have not reached "undetectable" you may want to talk to your doctor about genotype testing just to see if your particular strain of hiv already has some drug resistances.  Not only is the info invaluable it can also shed more light on which meds will still work for you so that you and your doctor can consider your next steps.

Good luck and let us know how you are doing!

Cheers,

Alan

[BeachNYC]

Thanks for all the very very helpful comments.

I actually returned to my former doctor today (I just wasn't happy with the lack of info I was receiving from the new one), who was also puzzled by the failure to see any change, but not alarmed. He ordered up resistance testing, along with new labs. His thought was that either a) the blood test was screwed up, or b) I do indeed have some resistance that was not detected when the resistance test was originally done on me about 3 months ago.

Regardless, I am feeling much better about the whole thing, since my doctor assured me that even if this regimen DOESN'T work, and despite the fact that I apparently have resistance to all non-nukes, that there are still a host of possible regimens that I can use. That's really all I needed to hear....I needed some reassurance that if this fails, it doesn't mean that all regimens will also fail.

I will update this when I get my labs back, in about two weeks.

Meanwhile, thanks again for your very helpful advice.

Robert