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Author Topic: First Lab Results Today  (Read 18692 times)

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Offline JS1983

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First Lab Results Today
« on: December 28, 2009, 04:11:08 pm »
We got my 26 year old son's very first lab results back today. CD4 309 (19.3%) and VL 9,150 copies.

We were a little disappointed that the Dr. held up on prescribing any medications until after one more Lab results are in, which is scheduled on 1/25/10. Then on 2/04/10 is when we have the next appointment to discuss the new lab results and meds.

Any ideas as to WHY he might have wanted it done this way? All he really told us is that with the next lab results he'd have a better idea as to my son's situation and that he wasn't in any immediate danger as a result of today's numbers. We just feel very uncomfortable knowing that the virus continues to replicate itself unabated.

Any thoughts on today's numbers? Are they borderline? I'd hate to see his CD4 level fall below 200 between now and the time meds are prescribed. What are the chances of that happening?

BTW, as far as meds go, we are really thinking on Isentress and Truvada, due to the Isentress being a little more side-effects friendly. Any thoughts on this?

I'm so glad that I can come to a place like this and discuss these things. Thank YOU, ALL of you.


A Caring Father...

Offline megasept

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Re: First Lab Results Today
« Reply #1 on: December 28, 2009, 08:14:28 pm »
Caring Father:

I understand your concern. Just from what you describe, I do not feel uncomfortable with your Son's MD's process. Though he could prescribe now, I guess he wants another set of numbers. If the 309 CD4 was steady and not a blip (down), I would say time to start ARVs.  I went through this kind of drop (as a result of a 7 year period with NO meds) and the few weeks between first dropping below 300 (280 CD4) and starting meds was no big deal, and this was during an accelerated (comparative) drop! I don't know if the MD favors prescribing once CD4s drop below 1) 300, 2) 350 or 3) 500. Ask him next visit.

I know the idea of viral replication is powerful. Remember, the meds won't kill off the virus altogether! The ARVs help but don't substitute for your Son's immune system. it's not like we get to decide between being infected and cured.

The VL is a great number for someone untreated. I think you know that.

Isentress + Truvada. Those are my ARVs. I have recommended this combo in numerous posts here (Look them up under "megasept").

Your Son surely benefits from your caring interest.

-Steven (aka  8) megasept)





« Last Edit: December 28, 2009, 08:31:50 pm by megasept »

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #2 on: December 29, 2009, 12:37:02 am »
Because his viral load is relatively low he is less likely to have a big drop in CD4s, although there are no guarantees of course. I think it's reasonable for the doctor to want another set of numbers, since it's common to establish a trend rather than go by just one "snapshot," yet very prominent HIV doctors such as Dr. Joel Gallant (who answers questions on the Johns Hopkins website) will start any patient who wants to start even if they have very good numbers.

Your son's CD4s are at a level that the CDC recommends to start but it's not outrageous to do another set of numbers and see what the trend is. In the meantime your son could be using this time period to psychologically get used to starting treatment, since adherence is key to a good outcome.

I started Isentress/Truvada in July of this year with very similar numbers to your son (VL was about 9k and my CD4s were about 330). I became undetectable very fast, within 2 weeks. I feel completely fine, have not gotten sick and I am not experiencing any side effects to speak of from the medications. Remember that Isentress is twice a day for now, although it's likely to be approved for once a day dosing in the near future.

 
« Last Edit: December 29, 2009, 10:08:13 am by Inchlingblue »

Offline JS1983

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Re: First Lab Results Today
« Reply #3 on: December 29, 2009, 07:20:22 am »
Thank you all so much for the encouraging words. They really mean a lot to me.

I didn't get much sleep last night thinking about this. Like I said, I just hate the thought that the virus is replicating itself unabated. I really hope that his CD4's don't drop below 200 between now and the results of his next Labs scheduled on 1/25/10.

I did tell the Dr. that the meds we wanted were Isentress and Truvada. So that still isn't going to change. That's why I really can't understand why he didn't prescribe them then. All that is likely to happen between now and his next lab results is that his CD4's will possibly go further down and his viral load higher. Besides, the meds are evident and we are still going to request the same meds.   

But I suppose he has his reasons, it's just that being on this other end can get pretty daunting.

Thanks again...

Offline CallMeSid

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Re: First Lab Results Today
« Reply #4 on: January 03, 2010, 10:26:21 pm »
Sorry to hear about your son's recent diagnosis.  He's lucky to have a caring father.  It sounds like the doctor's made the correct decision in terms of wanting to see another set of labs before initiating a lifetime's worth of medication.  Has your son's resistance testing been done?

Just curious...is that a typo in your son's age?  Is he 16 or 26?  I'm guessing he's 16 since you sound very involved in the decision-making process, speaking with the doctor and making reference to the drug combination "we" want, etc.  Of course, an adult of 26 would do these things for himself...
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline tednlou2

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Re: First Lab Results Today
« Reply #5 on: January 04, 2010, 01:41:18 am »
Does your son have any idea when he was infected?  CD4 can look very scary right after infection; however, the viral load is usually really high after infection.  Your son's is considered low actually.  Is your son ready to start meds--mentally and has access to them?  If your son wants to start right away, then he should start.  Many of us are dealing with that decision.  If someone has a CD-4 fairly high with low vl, many docs say to wait.  Other docs believe you should start right away.  I just talked to Dr. Gallant about this.  I explained my numbers--CD-4 811 at 21% and vl 27,000.  He told me he doesn't think is is good to "be walking around with vl of nearly 30,000 year after year."  Other docs differ on this.

I found out I was poz in Dec '08.  I got sick with bacterial pneumonia and my CD4 dropped to 171 at 19%.  It bounced back to what it is now.  My % bounces back and forth from 21% to 26%.  While my CD-4 is "normal", my % is considered low.  Should be above 30% I think.  Over the summer I was having a lot of depression and anxiety.  My CD-4 dropped to 537.  I started worrying.  They wanted to wait for 3 more months to get new numbers.  I was afraid it would drop down to below 200 in that time.  It actually bounced back up to around what it is now. 

I guess what I'm saying is that these numbers can fluctuate so much.  They tell ya to do all bloodwork at the same lab and the same time of day because it can fluctuate between labs and time of day.  So I'm debating whether to start meds now (which starts the meds for life) or waiting for the recommended 500 area.  I worry what HIV is doing to my body that the numbers aren't showing.  However, I worry about starting meds too soon.  Will I take my meds every day so I don't get resistance?  Will starting now start the clock on toxicities and treatment failure?  AMFAR says most people experience treatment failure on a particular regimen within 2 years.  To point out, many experts have said that usually happens due to poor adherance. 

I would not rush into anything.  Your son is 26?  Is he the type of person who will adhere to the meds once he makes the decision to start--he doesn't have substance abuse issues?  I'm learning all I can about meds now before I start.  If I would have started a year ago, I'm not sure I would have appreciated how important adherance is. 

I wish your son and you all the best.  Let us know how his numbers turn out next time.  It would be interesting to see whether his numbers actually improved. 

Take care and try not to worry.  I know that is easier said than done. 

Offline JS1983

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Re: First Lab Results Today
« Reply #6 on: February 11, 2010, 09:11:45 pm »
Hello to Every One! Well, we have the new numbers and more advice from the Dr.

I'll post the first and previous numbers alongside the new ones for your convenience:

Date Collected  CD4   %       VL
12/21/09             309     19.3    9,150
01/25/10             402     20.1    13,130

As you can see, there was a bit of improvement on the CD4 count and very slightly on the percentage, but of course, the VL also replicated by 3,980 copies more. What's your take on these numbers?

We were happy with some of this, but not with everything. Also and once again, the Doctor decided to wait on the meds. He said there really wasn't any cause for ALARM at this point in time. I asked him when would the point in time be for the meds. And he said when the VL would reach about 40K copies. The thing is, his next labs aren't scheduled until 3 months from now (May 24)! I'm afraid his VL could surpass that level by then.

Is that a fair and reasonable assessment/evaluation? I mean, if the VL is heading up towards that mark anyway, why not start meds now and keep the immune system from sustaining further damage? He's been feeling great without any meds and all, but why wait til there is danger of him getting sick?

Any feed back on the latest numbers compared to the first ones, will be greatly appreciated. Also any thoughts on the Doc's decision is also appreciated.

@ CallMeSid: No, I'm not aware of any resistance testing yet. I'll make sure to mention it next time we see the Doc. My son is 26 years old, and he is my youngest. I raised all 3 of my kids on my very own from when they were still in elementary school. I never remarried after divorcing during that time. My focus was on raising them as best as I could. We've all grown very attached to each other. I am still unmarried, and though I've had more than my fair share of opportunities during the years to remarry, I've chosen not to. I have a 4 bedroom home on 5 acres and my 26 year old son, who has never married, lives here with me. I am very involved because I want to know all I can from his Doctor about HIV. And because in many ways, it is also affecting me. But no, my son makes all of his own decisions, but naturally, I throw in my two cents of advice. Thanks for your great advice and what's your take on the above?

@ tednlou2: My son THINKS he was infected a few months ago (2-5). BUT, he had tested 2 or 3 times before during the last 2 or 3 years due to having what he believed were HIV symptoms. Each of those times the tests were negative. But in Dec. 09, he got really sick, with fever about 103 degrees and was also having some pain on his neck (left side), near his left under arm and near his left groin area. Then a few days later he tested HIV positive.

I've already discussed with him the importance of adherence. But it still concerns me that he may not adhere 100 percent by the clock. The same concerns that you have about starting your meds now, are some of the very same that we have too.

I know he will try his best to adhere, but because he still goes out occasionally and DRINKS and at times doesn't come back til the next day, is where my concern comes in. He used to do coke and smoke pot, but says he doesn't anymore... do I believe that? Not totally. The doctor already told him about the seriousness of those things, because I made sure to mention them to him.

So then you haven't started your meds yet? I wish you the very best too.

Please feel free to comment on my son's new results compared to his previous ones. And also your take on the doctor's decision and advice.

God Bless...         
 

Offline Miss Philicia

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Re: First Lab Results Today
« Reply #7 on: February 11, 2010, 09:43:33 pm »
I agree with the doctor's assessment that the lab numbers are more or less stable.  CD4 can vary by +/-100 easily, the % is stable, and viral load only seems to be going up because you're not grasping log changes.
link

Quote
HOW ARE CHANGES IN VIRAL LOAD MEASURED?

Repeat tests of the same blood sample can give results that vary by a factor of 3. This means that a meaningful change would be a drop to less than 1/3 or an increase to more than 3 times the previous test result. For example, a change from 200,000 to 600,000 is within the normal variability of the test. A drop from 50,000 to 10,000 would be significant. The most important change is to reach an undetectable viral load.

Viral load changes are often described as "log" changes. This refers to scientific notation, which uses powers of 10. For example, a 2-log drop is a drop of 102 or 100 times. A drop from 60,000 to 600 would be a 2-log drop.

So doing labs in three months doesn't present a risk at this time IMO.  If it makes you nervous it's within your rights to request that they be done in 2 months.
"I’ve slept with enough men to know that I’m not gay"

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #8 on: February 12, 2010, 01:06:37 am »
The doctor's assessment, as echoed by Miss P, is perfectly reasonable. The important thing is for your son to start to psychologically get ready for taking daily meds. He's likely close to the point of having to take them.

You mention "by the clock," and even though I personally am pretty exact for the most part when I take mine, the fact is that with most meds there's some wiggle room of a few hours give or take, especially after one is undetectable. I'm just mentioning that in case you thought it had to be exact timing. It does have to be every day, though and this is something that he will hopefully get used to and adhere.

As you probably already know, the prognosis is very good for someone diagnosed with HIV in this day and age, especially if it's caught before the immune system has sustained too much damage. The problems begin to arise  if someone is careless about the meds and begins to develop resistance and has fewer and fewer med options leading to a slippery slope 'till you're looking at salvage therapy.

You and he should take this time to research the options for first-line treatment (even though you said you don't have genotype results yet) and try to get an idea of what med combo might be the best choice for him.

LINK:

http://aidsinfo.nih.gov/Guidelines/GuidelineDetail.aspx?MenuItem=Guidelines&Search=Off&GuidelineID=7&ClassID=1

Offline megasept

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  • Steven here...
Re: First Lab Results Today
« Reply #9 on: February 13, 2010, 03:23:01 pm »
...with most meds there's some wiggle room of a few hours give or take, especially after one is undetectable.

http://aidsinfo.nih.gov/Guidelines/GuidelineDetail.aspx?MenuItem=Guidelines&Search=Off&GuidelineID=7&ClassID=1

Inchling:

While I hope there's a whole lot of wiggle room, I don't think it's a good idea to advocate this level of relaxation on med dosing. If you neglect (rather than it was socially inconvenient/didn't have the meds with you) to take a dose for 3 hours the likelihood of forgetting an "every 12 hour" dose is pretty high. I actually don't want to know which of my drugs is more sensitive, so I remain serious about each dosing (i take several meds + supplements). I am not perfect so I really don't want to allow myself to "slide" too much. NOW, if i went on a trip and forgot some critical med I'd turn right around. But if I allow myself to mess up a few days a month I might rationalize continuing on my merry way (row row row my boat...) with "Oh well...I'm undetectible." I am not comfortable with that scenario. Seewhatimean?

-steven (aka   8)  megasept)
« Last Edit: February 13, 2010, 03:27:19 pm by megasept »

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #10 on: February 13, 2010, 05:50:56 pm »
I wasn't advocating it, lol.

When I first started meds in July 2009 I was very meticulous about taking them at the exact time so I set a cell phone alarm, especially since I take Isentress which is twice a day.  This can actually be kind of stressful for the long haul (though highly recommended until one gets used to the meds) because you have to drop whatever you're doing when the alarm goes off and you're always reminded you have a serious illness.

A couple of months ago I was going on a trip somewhere with a 3-hour time difference so I wrote Dr. Gallant for his opinion and he said not to worry and to just take the meds at the same time that I normally take them in the new location.

I now don't have to rely on the cell phone and I basically take my meds at 8 AM and 8 PM but I've taken them as early as 7:30 sometimes and as late as 9:30, even 10.

I basically know I have my morning dose and my evening dose, it's less stressful than setting the cell phone and dropping everything I might be doing to take the meds at the exact same time. I've been 100% adherent.

The half-lives of all the new meds are forgiving give or take a few hours, especially after being undetectable.

If JS1983's son might have adherence problems then a once a day regimen would probably be best, even though Isentress rocks (and it'll likely be dosed at once a day in the near future).

If I find the Dr. Gallant response, I'll link it.
« Last Edit: February 13, 2010, 06:34:13 pm by Inchlingblue »

Offline Assurbanipal

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Re: First Lab Results Today
« Reply #11 on: February 13, 2010, 06:22:12 pm »
If a drug is being seriously studied for once a day dosing (which effectively means that instead of every twelve hours you would vary between zero hours and 24 hours apart) that seems like a pretty good cue that the specific timing of the second dose is not too important with that particular drug.
 

Just make sure you get it in.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #12 on: February 13, 2010, 06:37:45 pm »
If a drug is being seriously studied for once a day dosing (which effectively means that instead of every twelve hours you would vary between zero hours and 24 hours apart) that seems like a pretty good cue that the specific timing of the second dose is not too important with that particular drug.
  

Just make sure you get it in.


Yes, but I've noticed that Dr. Gallant as well as the doctors on thebody.com always respond that it's OK to be a few hours off, regardless of what specific meds people write in about (I read both of those Q&A forums consistently).

To be clear, I'm not advocating it per se, just saying that, once undetectable, a more relaxed, yet still 100% adherent approach seems to make more sense and the pharmacokinetics back this up.

Here's one recent example, the question gets asked ALOT, lol:

Taking Atripla

Feb 13, 2010

I know that it's been asked 10 million times in various ways, but i just want to know once and for all...I've been taking Atripla for 5 months now at night time, however I take the pill anywhere between 6pm and 11pm. Is that OK? I have never missed a dose. I also sometimes take it after I eat my dinner...is all of this OK?

Thanks.

Response from Dr. Young

Hi and thanks for your post.

No worries, 10 million + 1 is still a valid question (or questions).

I generally tell my patient to take their medications at or about the same time each day; this isn't by the clock to the second, but with a several hour window.

So long as your viral load has been undetectable and your tolerating medications well, I think that the answers to your questions, in brief, are yes, OK.

Be well, BY


LINK:

http://www.thebody.com/Forums/AIDS/Meds/Current/Q206748.html
« Last Edit: February 13, 2010, 06:47:28 pm by Inchlingblue »

Offline CallMeSid

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Re: First Lab Results Today
« Reply #13 on: February 14, 2010, 11:49:03 pm »
Hi.

It sounds like your son's numbers are pretty stable.  I think the doctor is doing the right thing to wait for one more set of labs to see what's what.  Assuming your son's numbers come back about the same in 3 months, he'll be sort of "in a gray area" (CD4>350 but <500) where some doctors would recommend treatment and some would say that waiting would be acceptable. 

But before any treatment is started, you'll want to get resistance testing done to ascertain whether your son's virus is resistant to any medications.  I thought the standard practice was to do this upon first diagnosis as long as the VL was above the minimum needed (I want to say it's about 1,500 or 2,500 copies/ml).  My understanding is that even if treatment isn't going to be pursued immediately, there's some benefit to having this baseline resistance testing done.

BTW, I was kind of surprised to read that your son's doctor said that he would recommend treatment only (?) if/when the VL hit 400,000.  Did he mention considering the CD4 level at all when making decisions regarding treatment initiation?  350's been the criteria in the treatment guidelines for a few years, but the most recent version advocated 500 as the point where treatment should start.  Does your son's doctor have a lot of experience with HIV?  Does he have a certification from AAHIVM or HIVMA?

It sounds like you're a great dad -- compassionate and generous and totally accepting of your son.  He's lucky to have you by his side.

It sounds like you're wanting the treatment to start, like, yesterday already.  I definitely understand that impulse, but I do hope your son is getting informed about all of the issues related to treatment (adherence, lifelong duration, insurance issues, side effects, etc.).  Together you can manage this, I'm sure.

Sending good vibes your way,

Sid
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline mecch

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Re: First Lab Results Today
« Reply #14 on: February 15, 2010, 04:51:12 am »
We read a lot about what you want, or what "we" want, but its not clear what your son wants as for when to start treatment. 
Also you can't just request certain HAART - it depends on resistance testing and also your sons preferences and the doctor matching HAART to him.
Sounds like you would be very much relieved if he were on HAART and undetectable, that's pretty normal reaction, but it might not be his reality - until he and the doctor are good and ready.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #15 on: February 15, 2010, 10:21:46 am »
 
BTW, I was kind of surprised to read that your son's doctor said that he would recommend treatment only (?) if/when the VL hit 400,000.  

He said 40K, not 400K. If a doctor said to wait until 400K I'd run and not look back and find another doctor.

JS1983: Isentress is a great choice but for now the dosing is twice a day and if you think he might have problems with being adherent it may not be his best choice. If doses of Isentress are missed it would not be difficult to become resistant. As others have mentioned, he should get a resistance test, although it's highly unlikely for people to acquire a strain with Isentress resistance these days since it has not been around that long. It's likely to be approved for once-a-day dosing in the near future. There are ongoing clinical trials looking at once-a-day dosing which are said to be going well but it's best to wait for the official results.

Assuming he has no resistance, the current guidelines consider the following combos to be Preferred Options:

Atripla
Prezista/Norvir/Truvada
Reyataz/Norvir/Truvada
Isentress/Truvada


Dr. Gallant gives his opinion on the pros and cons of each of these combos, LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/lost_on_choosing_medication.html?contentInstanceId=513447&siteId=7151
« Last Edit: February 15, 2010, 10:33:04 am by Inchlingblue »

Offline xe77

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Re: First Lab Results Today
« Reply #16 on: February 17, 2010, 12:46:47 pm »
Precisely what I was going to say. It does appear however that Isentress is now approved for treatment-naive patients. This happened very recently, however I do believe that's for the FDA. I have not hear yet if it is approved in Canada for such use. (not sure of which country you live in).

Regardless, the doctor will very likely recommend Atripla, because the dosing is convenient and many patients are successful with this pill, in addition, a large majority experience little symptoms or any that last more than 3 to 5 weeks.

My last comment is that the reason the doctor requested a second CD4/VL test is due to these two facts. First, there isn't enough data to see any trends. Secondly, the CD4 count can vary a fair amount, day to day and hour to hour. If you're tired vs. first thing in the morning. If you are sick or well. If you are stressed out. These all affect the CD4 count. For me I had one that was 600 one month, then 1220 the next - only because I had a GI infection. The next test was 650... several CD4 tests are required to draw any conclusions. And since your son doesnt have a CD4 count below 200 it isn't urgent that ARV medication is started immediately, especially with a nice low viral load like that.

Good luck to both of you! Remember the most important thing right now is that he be well rested, well-fed, and keep the stress down. Dad's (and Mom's) support is very important and it looks like he's getting it in boatloads!

He said 40K, not 400K. If a doctor said to wait until 400K I'd run and not look back and find another doctor.

JS1983: Isentress is a great choice but for now the dosing is twice a day and if you think he might have problems with being adherent it may not be his best choice. If doses of Isentress are missed it would not be difficult to become resistant. As others have mentioned, he should get a resistance test, although it's highly unlikely for people to acquire a strain with Isentress resistance these days since it has not been around that long. It's likely to be approved for once-a-day dosing in the near future. There are ongoing clinical trials looking at once-a-day dosing which are said to be going well but it's best to wait for the official results.

Assuming he has no resistance, the current guidelines consider the following combos to be Preferred Options:

Atripla
Prezista/Norvir/Truvada
Reyataz/Norvir/Truvada
Isentress/Truvada


Dr. Gallant gives his opinion on the pros and cons of each of these combos, LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/lost_on_choosing_medication.html?contentInstanceId=513447&siteId=7151

« Last Edit: February 17, 2010, 12:52:52 pm by xe77 »

Offline xe77

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Re: First Lab Results Today
« Reply #17 on: February 17, 2010, 01:00:57 pm »
In that case it's likely the infection was at the end of November or beginning of December.

Frankly.. to have a viral load that low in such a short period of time is a good sign.

Don't worry about the rise in viral load necessarily. More CD4 cells = more cells to infect = more viron copies. Also, you must know, that the Viral Load test has a somewhat generous margin of error. When comparing results its more accurate to use the Log value. The viral load number is generated using a function of the Log value. Mosts tests have a tolerance range of 0.5 Log to 1 Log. For example a result of 340000 or 370000 is actually the same value, because they are within the same Log range and therefore the test can't definitively say which is the correct value so we treat those two as "no change". Note: As the value drops towards zero, the tolerance expressed as viral load numbers become smaller. The higher the number the larger the value's margin of error.

In short, the two viral load results are likely within the same tolerance and therefore mean the same value because the test can't distinguish between them.

The MOST important part here, is that the CD4/CD8 ratio is improving and that's a much more accurate indicator than CD4 or viral load. Be patient for a few more months still - the ratio is moving nicely in the right direction and infection was recent so his body needs more time to recover. The process can take up to 6 months typically.

Hello to Every One! Well, we have the new numbers and more advice from the Dr.

I'll post the first and previous numbers alongside the new ones for your convenience:

Date Collected  CD4   %       VL
12/21/09             309     19.3    9,150
01/25/10             402     20.1    13,130

As you can see, there was a bit of improvement on the CD4 count and very slightly on the percentage, but of course, the VL also replicated by 3,980 copies more. What's your take on these numbers?

We were happy with some of this, but not with everything. Also and once again, the Doctor decided to wait on the meds. He said there really wasn't any cause for ALARM at this point in time. I asked him when would the point in time be for the meds. And he said when the VL would reach about 40K copies. The thing is, his next labs aren't scheduled until 3 months from now (May 24)! I'm afraid his VL could surpass that level by then.

Is that a fair and reasonable assessment/evaluation? I mean, if the VL is heading up towards that mark anyway, why not start meds now and keep the immune system from sustaining further damage? He's been feeling great without any meds and all, but why wait til there is danger of him getting sick?

Any feed back on the latest numbers compared to the first ones, will be greatly appreciated. Also any thoughts on the Doc's decision is also appreciated.

@ CallMeSid: No, I'm not aware of any resistance testing yet. I'll make sure to mention it next time we see the Doc. My son is 26 years old, and he is my youngest. I raised all 3 of my kids on my very own from when they were still in elementary school. I never remarried after divorcing during that time. My focus was on raising them as best as I could. We've all grown very attached to each other. I am still unmarried, and though I've had more than my fair share of opportunities during the years to remarry, I've chosen not to. I have a 4 bedroom home on 5 acres and my 26 year old son, who has never married, lives here with me. I am very involved because I want to know all I can from his Doctor about HIV. And because in many ways, it is also affecting me. But no, my son makes all of his own decisions, but naturally, I throw in my two cents of advice. Thanks for your great advice and what's your take on the above?

@ tednlou2: My son THINKS he was infected a few months ago (2-5). BUT, he had tested 2 or 3 times before during the last 2 or 3 years due to having what he believed were HIV symptoms. Each of those times the tests were negative. But in Dec. 09, he got really sick, with fever about 103 degrees and was also having some pain on his neck (left side), near his left under arm and near his left groin area. Then a few days later he tested HIV positive.

I've already discussed with him the importance of adherence. But it still concerns me that he may not adhere 100 percent by the clock. The same concerns that you have about starting your meds now, are some of the very same that we have too.

I know he will try his best to adhere, but because he still goes out occasionally and DRINKS and at times doesn't come back til the next day, is where my concern comes in. He used to do coke and smoke pot, but says he doesn't anymore... do I believe that? Not totally. The doctor already told him about the seriousness of those things, because I made sure to mention them to him.

So then you haven't started your meds yet? I wish you the very best too.

Please feel free to comment on my son's new results compared to his previous ones. And also your take on the doctor's decision and advice.

God Bless...         
 


Offline Jeton

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Re: First Lab Results Today
« Reply #18 on: February 17, 2010, 05:39:51 pm »
hi, i just joined specifically to answer JS's question. i think the trend toward earlier treatment has been inevitable ever since ARV's became both effective and tolerable. If your son truly understands evolutionary theory at even a basic level, he'll understand the danger of less-than-100% adherence.

i think the old model of "wait for the cd4 count to stabilize after initial infection" is outdated, virologically speaking. the longer he's not on meds, the more deeply the virus can entrench itself in reservoirs, and the more damage it will do to his system, both in terms of inflammation and from actual damage done by the virus itself. not to mention that long-term, ur lowest cd4 count haunts u permanently as ur "baseline".

the only thing i would wait on in his situation is genotype/phenotype/trofile testing. if it's at all possible, i would start him on once-daily dosing regimes...the possibility of future drug n alcohol use and/or abuse makes adherence much easier once-daily. in my informal experience, people with a history of using pot and/or hallucinogens are more sensitive to the effects of efavirenz, so my suggestion would be once-daily Prezista or Reyataz. i would NOT tell someone to start on Isentress if there's any decent chance they wont be 100% adherent, the resistance-threshold for integrase inhibitors is very low...and they'd need to avoid ingesting any substantial amounts of cations (calcium, sodium, magnesium, potassium, iron) for 3-4 hours before n after.

given all those complications, i think a once-daily PI is a better option for him, if testing shows his virus is vulnerable to it. once-daily at lunchtime 12-2pm is an easier regime to maintain for someone in his situation. if he's amenable to Atripla, that's best at night for most people, but if he gets drunk/high one night he might pass out n miss a dose.

for anyone forgetful or who gets into situations that make keeping track of time difficult (not just drugs/alcohol, but sleep difficulties, a complicated personal/professional schedule etc) once daily dosing is FAR easier to adhere to perfectly.

the only thing to gain from waiting is collecting more baseline values, meanwhile a typically-deadly virus is making itself ever-more at home.

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #19 on: February 17, 2010, 07:25:24 pm »
 i would NOT tell someone to start on Isentress if there's any decent chance they wont be 100% adherent, the resistance-threshold for integrase inhibitors is very low...and they'd need to avoid ingesting any substantial amounts of cations (calcium, sodium, magnesium, potassium, iron) for 3-4 hours before n after.


I haven't heard of any of those interactions and in fact, a recent Q&A on the Hopkins site stated there are no known calcium interactions with Isentress. Not saying that you are wrong but can you cite where you got the information? Thanks.

Isentress and Calcium

Paul Pham, PharmD

Posted on Jan 17, 2010

I swear I read on here once that Isentress and calcium supplements shouldnt be taken together but I've been through the archives without finding the question. Would you send this question on to the pharmacy expert? Is it AOK or no to take Isentress and calcium at the same time? Yours truly, OCD AND (still) Undetectable

On Jan 22, 2010 Paul Pham, PharmD replied:
There is no known interaction between raltegravir (Isentress) and calcium supplements.

Paul A. Pham Pharm.D.



LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/isentress_and_calcium.html?contentInstanceId=513144&siteId=7151
« Last Edit: February 17, 2010, 07:27:26 pm by Inchlingblue »

Offline Jeton

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Re: First Lab Results Today
« Reply #20 on: February 17, 2010, 08:15:31 pm »
http://hivinsite.ucsf.edu/InSite?page=ar-07-01

excerpt:

Clinical Use

It appears that polyvalent cations (such as magnesium, calcium, and iron) bind integrase inhibitors and interfere with their activity against integrase. A pharmacokinetic study showed that administration of antacids containing divalent cations at the same time as elvitegravir (an investigational integrase inhibitor) lowered serum elvitegravir concentration by more than 40%. This effect was minimal if antacids were taken 4 hours apart from the integrase inhibitor.(5) The interaction of raltegravir and antacids has not been studied; pending further investigation, antacid medications and other agents with polyvalent cations should be used cautiously with (and taken separately from) raltegravir. There is no effect of proton pump inhibitors on integrase inhibitor concentrations.

footnote:

5.        Ramanathan S et al. Pharmacokinetic evaluation of drug interactions with ritonavir-boosted HIV integrase inhibitor GS-9137 (elvitegravir) and acid-reducing agents. In: Program and abstracts of the 8th International Workshop on Clinical Pharmacology of HIV Therapy; April 16-18, 2007; Budapest. Abstract 69.

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #21 on: February 17, 2010, 08:44:50 pm »
I always take my vitamins and supplements several hours apart from the HIV meds, just in case. This is interesting, though, considering what that pharmacist from Hopkins said and that it's not mentioned in the aidsmeds.com page on Isentress. 

I guess the pharamcist is technically correct in that there are no "known" calcium interactions with Isentress but this is good to know. It's weird that "The interaction of raltegravir and antacids has not been studied" considering Isentress is so much further along than elvitegravir.

Offline Jeton

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Re: First Lab Results Today
« Reply #22 on: February 18, 2010, 03:39:27 pm »
I always take my vitamins and supplements several hours apart from the HIV meds, just in case. This is interesting, though, considering what that pharmacist from Hopkins said and that it's not mentioned in the aidsmeds.com page on Isentress.  

I guess the pharamcist is technically correct in that there are no "known" calcium interactions with Isentress but this is good to know. It's weird that "The interaction of raltegravir and antacids has not been studied" considering Isentress is so much further along than elvitegravir.

i can't speak to the testing process since i'm just a layman, but 2 years ago i decided to tackle my longterm lo-grade viremia on reyataz and epzicom, so i switched to my present overkill regime of isentress, truvada, and, at that time, lexiva. my viral load didn't budge after 2 months, and my nausea was thru the roof despite 20mg/day marinol...i noticed the "fosamprenavir calcium" chemical name, recalling the need to avoid antacids while on reyataz, started googling n found that link. i showed it to my doc at the time, she thought it was fascinating but she also assumed that the makers of isentress would have tested for that. i said i wasn't so sure there was much incentive to do so. she suggested i switch from lexiva to prezista, and i did so. i've been happy ever since. the side effects profile is certainly heavier than it was on the old regime, and i hate twice-daily dosing n would switch back to once daily the moment i'm confident i could keep low vl,  but i've had consistently undetectable viral load for almost 2 years now.

in general, i find a little paranoia goes a long way to personal hiv care. i told my old doc "please do not tell me to get casual about my meds, or sooner or later i'll end up blowing off a dose. i'm very at ease under normal circumstances, but if i'm in a situation where my medication time is imminent, i will go into mountain-moving panic mode to get to taking my meds at all costs, no matter the situation. that's why i never miss a dose". she shut up about it. :)

i think this 26yo needs to get to a similar place, n i think once-daily dosing will make that more practical n less traumatic.
« Last Edit: February 18, 2010, 03:42:51 pm by Jeton »

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #23 on: February 18, 2010, 03:48:29 pm »
she suggested i switch from lexiva to prezista, and i did so. i've been happy ever since. the side effects profile is certainly heavier than it was on the old regime, and i hate twice-daily dosing n would switch back to once daily the moment i'm confident i could keep low vl,  but i've had consistently undetectable viral load for almost 2 years now.
 

Not to hijack the thread but since you can't receive PMs yet (not enough posts), I wanted to point out the once daily Prezista study (but I guess you're also on Isentress?):


Once-Daily Prezista Effective, Safer for HIV Treatment-Experienced Patients

LINK:

http://www.poz.com/articles/HIV_prezista_dosing_761_18025.shtml

Offline Jeton

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Re: First Lab Results Today
« Reply #24 on: February 19, 2010, 03:08:23 am »
Not to hijack the thread but since you can't receive PMs yet (not enough posts), I wanted to point out the once daily Prezista study (but I guess you're also on Isentress?):


Once-Daily Prezista Effective, Safer for HIV Treatment-Experienced Patients

LINK:

http://www.poz.com/articles/HIV_prezista_dosing_761_18025.shtml

that's excellent news to read! in my case i'll also be awaiting for approval of once-daily Isentress dosing, bcuz my doc fought about once-daily prezista 6 months ago...much obliged!

Offline mecch

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Re: First Lab Results Today
« Reply #25 on: February 19, 2010, 05:08:56 am »
i think the old model of "wait for the cd4 count to stabilize after initial infection" is outdated, virologically speaking. the longer he's not on meds, the more deeply the virus can entrench itself in reservoirs, and the more damage it will do to his system, both in terms of inflammation and from actual damage done by the virus itself. not to mention that long-term, ur lowest cd4 count haunts u permanently as ur "baseline".

1st - HIV specialising MDs are hardly unanimous on "treat instantly at diagnosis" and its not the recommended protocal in most countries.   People identified in serocoversion or in the acute phase are not routinely treated. I would like to know where you get your theories about the "baseline CD4" and if you know of any research that proves reservoirs are different between those treated in acute phase, say, and those treated 4 years after?  And that it is clinically significant.


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #26 on: February 19, 2010, 09:48:29 am »
 I would like to know where you get your theories about the "baseline CD4" and if you know of any research that proves reservoirs are different between those treated in acute phase, say, and those treated 4 years after?  And that it is clinically significant.

To soon to say if it's clinically significant but:

Individuals who have started treatment early in infection carry a viral reservoir of limited size that is harbored mainly by TCM cells, which have the capacity to survive for long periods of time.

Also:

The second reservoir is harbored by TTM cells and is the main reservoir in individuals with low CD4+ counts, the majority of whom are characterized by persistent immune activation.

It's possible that starting treatment early, thereby limiting the size and kind of reservoir, might be an advantage when eradication treatments such as Prostatin (for activating reservoirs) are attempted.

LINK:

http://www.natap.org/2009/HIV/062609_01.htm
« Last Edit: February 19, 2010, 09:50:59 am by Inchlingblue »

Offline Jeton

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Re: First Lab Results Today
« Reply #27 on: February 19, 2010, 08:04:03 pm »
To soon to say if it's clinically significant but:

Individuals who have started treatment early in infection carry a viral reservoir of limited size that is harbored mainly by TCM cells, which have the capacity to survive for long periods of time.

Also:

The second reservoir is harbored by TTM cells and is the main reservoir in individuals with low CD4+ counts, the majority of whom are characterized by persistent immune activation.

It's possible that starting treatment early, thereby limiting the size and kind of reservoir, might be an advantage when eradication treatments such as Prostatin (for activating reservoirs) are attempted.

LINK:

http://www.natap.org/2009/HIV/062609_01.htm

thank you, at some point i will also hunt for the pozhealth yahoogroup posting from a couple of years ago showing an article indicating the possibility of HIV eradication and/or the possibility of far greater longterm viral suppression by initiating treatment during seroconversion.

that possibility, and the overall trend toward earlier treatment r consistent with the basic biology involved...a "living" pathogen progressively colonizing and consuming us as food. my own magical-mystery 'intuition' tells me to interrupt that process sooner than later.

i'm not surprised at all that research supports that conclusion, it's common sense.

Offline Inchlingblue

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Re: First Lab Results Today
« Reply #28 on: February 19, 2010, 09:09:53 pm »

that possibility, and the overall trend toward earlier treatment r consistent with the basic biology involved...a "living" pathogen progressively colonizing and consuming us as food. my own magical-mystery 'intuition' tells me to interrupt that process sooner than later.

i'm not surprised at all that research supports that conclusion, it's common sense.

I think the concerns and why starting meds v. letting HIV have its way has been and to an extent still is a delicate balance mainly comes from the fact that until fairly recently the medications were highly toxic with nasty side effects. One could argue they're still toxic, but certainly not as much as the earlier generations of meds and they're much more tolerable so the pendulum is moving back in the direction to treat earlier. There are also concerns over cost, accessibility and adherence.

One of the biggest "HIV Stories" of 2009 according to thebody.com is the "Test and Treat" experiment being tried in DC. It's a way of stopping the progression individually and the spread in the community. If only there weren't so many ADAP waiting lists and people didn't have to jump through so many hoops to access the medications.

 

 


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