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Author Topic: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)  (Read 56196 times)

0 Members and 3 Guests are viewing this topic.

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #50 on: November 29, 2010, 03:08:46 PM »
Hi Guys,

Thanks. In the bottom of my heart and from learning so much in this forum about individual experience, I believe you are right.

Nonetheless, in our socialized health care system, HIV clinics, allowing doc to appreciate case by case, is all new. The one I am going to is the first one and has opened only very recently. My long timer Doc had to leave his hospital practice (and monthly salary) to go private and I believe that they have established sets of rules where patients have to be handed back to hospitals. Reaching 50 at month 6 is one of these rules (as I read them...). They are keeping a leash on him... Now, what kind of attitude my Doc will have, I still do not know.

Believe it or not I may very well have been the very first newly infected patient there. (other patients are mostly follow ups, I assumed). The paint was still wet when I walked in...

My doc said he could not sleep half of the night because of my case. I therefore assume he could have a good, sound, sleep the other half, then... The reason why my VL decreases only slowly is something I hope to investigate a bit further. This way, I can share my personal experience with confidence and support others in the same situation.

Intellectually speaking, I am not worried. Strangely enough , since my POZ test, seems like my intellectual self and emotional self have dissociated themselves...

Thanks again for the support

Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #51 on: December 06, 2010, 07:06:57 PM »
Blood test today, results received late at night...

BINGO !!!

Stay tuned

A very happy Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline J.R.E.

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #52 on: December 12, 2010, 10:01:32 AM »
Blood test today, results received late at night...

BINGO !!!

Stay tuned

A very happy Eric

So tell us what's going on Eric!

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #53 on: December 12, 2010, 06:44:32 PM »
Hi Ray,

Recently I have been reporting a bit less in this thread because I have been distracted by other issues and do need to move on or at least be less obsessive in order to ease my stress issue (the tension on the jaw, which is still there but fading)

Yet, eventhough it is past midnight, I'll be happy to answer you: you help in this matter has proved priceless

A moment of truth
*****************

I have kept reporting on this (monologous) thread because I have realized a good number of people are reading it.

I had initiated it because this combo is less used and it is hard to find patient's experience on this, but I know for a fact that lots of people do read this forum, looking for information, even if they are not participating themselves.

I have been a bit cautious recently in reporting real time because I, sometimes, needs a bit of time to analyse things before stamping something that will stay in this thread forever.

sometimes I can get so self-convinced that I can be led into entering controversy and the last thing that this thread needs is controversy.

My gut feeling is that this combo works very fine for me. After all the anxiety of the initiation, the last remaining issue is virological success (or failure): it is also the most important

It would do a disservice this combo and the readers who are considering it to report alarming labs.

My VL is going down slow... That is a given fact.

So what ? It's MY body, MY virus and MY combo.

Here, in this country, if your VL is above 50 at month 6, you are declared a virological failure, and, I, personally hate failures (in general).

All markers were pointing to a slow but steady decrease, yet, my projection was that I would be a bit a above the 50 landmark.

What if it is 70 ? or 60 ?

Preparing for a doc visit under these conditions was psychologically and intellectually exhausting.

As we got the results, the discussion with my doc could have lasted no more than 5 minutes.
It lasted 1h and 1/2 (as usual...), because I wanted to get to the bottom of a few issues, and, that, I'll report later.

let me give you the results raw and I'll comment next week.

HDL : 0.78 ( cool !!!)
LDL : 1,38 ( fine with me...)
Fasting sugar : 1.01
A1C Hemoglobin : 5.2 % (a dream come true...)
Everything else (liver, kidney, etc.: perfect)

CD4 : 707
CD4% : 32 %
CD4/CD8 ratio : 0.78

and last but not least:

VL : 48 ! ! ! ! ! ! ! !

That's all folks ...

Cheers and thanks for you continuous support

Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline J.R.E.

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  • Posts: 7,251
  • Joined Dec-2003 Living positive, since 1985.
Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #54 on: December 12, 2010, 08:51:51 PM »


HDL : 0.78 ( cool !!!)
LDL : 1,38 ( fine with me...)
Fasting sugar : 1.01
A1C Hemoglobin : 5.2 % (a dream come true...)
Everything else (liver, kidney, etc.: perfect)

CD4 : 707
CD4% : 32 %
CD4/CD8 ratio : 0.78

and last but not least:

VL : 48 ! ! ! ! ! ! ! !

That's all folks ...

Cheers and thanks for you continuous support

Eric



That's fantastic news Eric!! Congratulations !! Thanks for checking back. Keep in touch when you can,  I am always checking out this thread.


Ray 8)
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #55 on: December 20, 2010, 05:28:07 PM »
Hi,

Back to reporting... Doc had scheduled a 1 hour slot. discussion lasted much longer... Many issues have been discussed.

I'll report those which are of interest to this thread, mainly aiming at providing information about this once demoted regimen.

I am trying to guess who reads this thread as so few of us are reporting being using this combo ...

- search engines and crawlers
- regulars (thanks again Ray !)
- those who are anxious as their doc recommended this somewhat out_of_fashion combo whereas there are many other cool alternatives (and they wonder why...)
- those who are anxious as their doc prescribed this because of LIMITED choice in their country (and they feel frustrated...)

Access to information (Internet) is far less expensive than access to the meds themselves. Sometimes I feel for those, born in a poorer country, as they read on the Internet all those cool news about meds they will never be able to afford.

This report is for them. Me? as far as I am concerned, HIV is : PROBLEM SOLVED (so far...). I hope to help others

Before I start let me say this: me being slow in VL decrease is NOT a meds issue. It relates to my personal, individual dynamics.
So if the previous reports had been a bit alarming about resistance, stay reassured, I am strongly convinced this combo works for me (but I'll keep checking)
I have taken a number of blood test in between which I have not reported as they are being collected for an other purpose.

Doc: Well this number (48) is better than you had projected.
Me: Yes, on one hand it is a relief. on the on other it deprives me from the right of a virile discussion with you about the choice you had made (meaning : we are going to have this discussion no matter what)
Doc: Before we start, I see no reason to switch you from a combo that you seem so found of. And also, the alternative that we had considered (Isentress and Kivexa) will NOT be a once-a-day with me.
Me: I know that already... Do you know what I like most about this combo ?
Doc: ??
Me: It is LOW COST
Doc (surprised): indeed one of the least expensive. But does that matter to you ?

(side note: the monthly cost of the med is what I charge my clients for one HOUR of my time... not that I am bragging about that, but it helps explain my docs comment)
(my doc is a Humanitarian type, doctors-without-(sex)-borders type, I'm a hardcore selfminded entrepreneur, sort of)

Me: if all the money I have spent in (uncovered) tests and monitoring can help people who can not afford that luxury, then it is money well spent
Doc : (smiling)
Me: Low cost, high risk, high return. I love that !... You had become a bit nervous, no ?
Doc: well...
Me : now, if you would even start to think that I might fear that the meds are only working halfway, then you'd be mistaken.
the meds work or they don't. For me, (thus far) : they WORK
Doc : I am happy to hear you are so positive

(being 'so positive' in the mouth of an HIV specialist is somewhat, hum... bad taste... But, hey, we are having a frank discussion, here)
Me : I'm sure you would want to know why (now, he is cornered...)
Doc: Sure, I do (do you really ?)

Do you want to know why I think it works (very) well for me ?

Do you ?

Then stay tuned... and see you next week

Happy Holidays everyone !

Eric



 
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #56 on: December 31, 2010, 06:11:11 PM »
On one hand I am happy that I have a doctor that is so involved and offers a reassuring, comforting approach.
They even offer a trained psychologist and assistants for discussion, etc. (I declined, though)

It is important to have someone to talk to.

On the other, I can not help it. The wait to UD, the fear for SE, the sense of urgency on every thing (clean up my financials, work, ..., just in case...) as opposed to the long wait for something that might not even come (toilets, UD, failures of all kind)
has drained a lot of my energy.

I talk to my doc every day...

Even have his picture on my PC, by my bedside.

I MUST understand, sort, clarify, classify, no stone left unturned.

I have a one time chance to talk to him for real. I realize that this is a rare chance I have that he spends some time with me (and most likely many others, too...).
It is a privilege that not everyone can enjoy (socialized health care or not)

But drawing ones doc attention is something than can be earned:

- educate yourself (so that he does not get bored with answering trivial questions)
- prepare your visit
- list items on your current health (side effects, weight gain or loss, mood, etc.)
- list your questions (in writing, you should leave the interview with an answer for each of your questions)

Somehow, try to make the interview entertaining for him/her as well !

Before I tell him what I think of the whole thing, I had to put things straight with my doc:
- that I did my homework the best I could, but so many concepts are so new to me
- That I think he was quite alarmed at month 4 (and so was I)
- that we need to analyze it, understand it before we put it behind us and move on

That being said, the discussion could begin...

There is untimely interruption in this report, though...

We are 3 minutes to midnight and hence, to 2011. It is New Year's eve !

I have 3 minutes left for a thank you note:

- the people I have met through this journey (docs, nurses, biologists...) they know and have been very comprehensive
- the people who around me and do not know (family, coworkers, etc.) : their just being around has been helpful in many ways !
- the people on this forum :it is a truly open and challenging place

And at this very minute it is New Year !

Family is asleep, but I'll sneak out with a bottle(s) of champagne and plastic glasses and share it with the crowd that has assembled in front of the City Hall and is celebrating

Happy New Year everyone!

Eric  




« Last Edit: January 02, 2011, 02:11:08 AM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #57 on: February 15, 2011, 06:30:16 PM »
Feb 14

Hi,

The reader deserves that I carry on my report on discussion with my Doc about the time it took me to become UD.
Simply because some reader may be offered this combo as a choice and this thread is about collecting pros and cons as well as patient's experience.
What makes it difficult to report is that once you state something, in an informative thread like this one, you do not want to be dragged down into fruitless controversy.

Therefore, before exposing the discussion with my doc, let me get back to one thing.
Sometimes, I have said things as if there were obvious, because I got them from him and I take it it is common or current knowledge.
This is not exactly what I have experienced in posting in this forum. My doc is sitting in (our local) HIV guidelines committee and locally plays a role similar to Dr Gallant in the US, providing usefull insight the local groups/associations/activists/govt.
He is no guru, but treating people with HIV and other STD's is his turf...

I need to says this, because I was offered what he, himself, once, nicely called an 'atypical' regimen. and many might thing he is completely NUTS.

Since then, I also found out that I am the first one HE initiates on this combo, and, inadvertently, understood that he initiates OTHER people on different combos (depending on their profile)

I also found out that he follows up a lot of 'old timers'. This gives him some perspective about long term efficacy of a combo, in particular, this one.

We had everything covered with in-depth interviews, blood analysis, close follow up etc. and if it were not for that extended time to UD, I'd say everything went right on.

I am not an advocate for my combo.
I simply relate my own experience and happy to share with others using the SAME combo, in order to provide the prospective user a better feel

On the other hand, my previously reported slow decay in VL could (falsely, IMHO) be interpreted as a lack of virological efficacy and this would do a disservice to the combo, as well as its current or prospective users.

If you read this thread as a prospective user, what does MY slow decay in VL means something to YOU ?
(and, incidentally, as concerned individual, does it mean something to me?)
Should you be worried that my personal experience transposes to yours ?

NOT reaching UD is bad news: it is called virologic FAILURE... a would warrant a switch.
Is reaching UD slowly some semi-failure ?

Time-to-UD
**********

The concept of Time-to-UD (the length of time between initiation of meds and and the moment ones' VL becomes UD)
is to be taken with caution. because its significance it NOT the same whether you look at it from a global/statistical level or at an individual level.
Look at it this way: rich nations have poor people, and poor nations have some ultra rich people. Statistically, it is better fortune to be born in a rich country. But, individually speaking being the son of Mr Multimillionaire of a poorer nation can be quite fortunate as well.
So statistical and personal perspectives are different

Because the history of HIV meds started with meds that were moderately potent (so that HIV was not entirely suppressed and a residual viremia occurred, hence resistance, etc.) and as new meds were introduced, it became quite obvious that the shorter the time-to-UD for the first cohort to use the new combo for the first time, the better.
Therefore, after crunching all these data from all these patients, the-faster-to-UD-the-better concept emerged (for assessing a new product or delivery method or dosing).
The current golden standard is Efavirenz.

All this under the threat of dreaded RESISTANCE.

This is supported by the fact that early mathematical models have predicted that the rate of decay correlates to first approximation with the drug potency.
Of note, these publications date back to 1998-2003 (for the very latest major paper), at a time where under-potent drugs were still in use.
For example:
http://www.ncbi.nlm.nih.gov/pubmed?term=9192676
http://www.ncbi.nlm.nih.gov/pubmed?term=11734232
http://www.ncbi.nlm.nih.gov/pubmed?term=12660935
http://www.ncbi.nlm.nih.gov/pubmed?term=9727569

Hence, after reading all theses post, gladly announcing : started XYZ and became UD in 2 months! , started ZYX and became UD in 3 weeks !!!. etc.

I was looking forward to the UD status, eager for it, anxious for it, desperate for it !

Well, my personal history gave me time, much more than I wanted (to be honnest), to reflect upon Time-to-UD.

And came to the conclusion that the faster-to-UD-the-better-golden-rule may need to be revisited or at least nuanced or put in the perspective of context.

See... I am moving slowly, very cautiously into the argument.
That is because it is so easy to jump to conclusions. (and I hope to avoid controversy)

First, let's bear in mind that, at least where I live, underpotent meds (e.g. AZT) have been phased out and any new med's potency is checked before approval.

I was initially very attracted by Isentress + truvada (and was very upset to hear that our socialized healthcare guidelines does not offer that option for treatment naives, here, whereas it does in the US)
That was because, statistically, Isentress + truvada gets you to UD faster, so, I thought, quite naively, that it is virologically superior.
If the faster-to-UD-the-better is taken as a golden rule for choice, then, this is a quite obvious thing to assume.

Except that, viral load dynamics are a little more complex than I initially thought...

Dr Siliciano, himself, reviewed the issue here, in 2009 :
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980788/pdf/nihms246009.pdf
and concludes: (I cite from the above article)
viral dynamics produced by different antiretroviral drugs should not be directly compared with each other.

He discusses here that it is the very nature of the inhibitor's mechanism and its earlier position (and intervention) on the time line of viral duplication in the cell that will mechanically lead to a faster decline of VL and NOT because of some a virological 'superiority'.

Therefore the recent need for a better definition for drug potency than just the rate of decay.

Several candidate surrogate indices have been proposed such as instantaneous inhibitory potential (IIP) or the inhibitory quotient as predictors of antiretroviral efficacy.

The issue is still currently (2010 Nov 1) fiercely debated as can be seen here:
http://cid.oxfordjournals.org/content/51/9/1105.2.full.pdf+html

More recently, experts have developed a concept of med's potency index. It is a fairly a new concept (2009 Dec) and it is developed here:
http://www.ncbi.nlm.nih.gov/pubmed/19837466
and better developed in this free article:
http://www.iasusa.org/pub/topics/2010/issue3/104.pdf

(side note: I admire Dr Siliciano's work and the way he develops his work and thoughts with crystal clarity)

In my personal understanding, the take home lesson is that if the combo is potent enough to suppress the virus (and fits the resistance profile, of course), the virus gets suppressed.
The 'pressure' is so high that it can't replicate.
If the 'pressure' is enough, it does not have to be more than enough, nor ten times more than enough, nor hundred times (it is a logarithmic scale...)

In that perspective viramune + Epzicom (Kivexa) is potent enough (provided it matches the resistance test profile). It is not the most potent. But its potency is over the required (or recommended) level of 6. (as per the above article)

Since all 'recommended' or 'alternative' regimen (in the developed world) are potent enough, this faster-to-UD-the-better sorts of loses some of its pertinence at the individual patient's level.
Pretty much like the competition for faster cars should be tempered down by the generalisation of speed limits.

The take home lesson is that faster-to-UD-the-better, despite remaining the golden rule, in the absence of a better rule, also needs to be placed and nuanced in the context, EVEN at the drug efficiency assessment level.

Of course, all the above was NOT part of the discussion with my Doc. They are 'starters' or appetizers, if you would.

Because, that discussion I am reporting is not a about the-faster-to-UD-the-better-golden-rule at meds' level but was about patient's level.

Yet, the cautious reader needs to be aware of my state of mind at that time and current scientific context.

I am more than happy to congratulate anyone who reaches the Graal (UD) quickly, but, relating my own experience, would like to convey to those who do not open the bottle of champagne within the first month of treatment that there is no rush (as long as you get there..., though)

This is what my discussion with my Doc is about.

Yet, before I go on, please allow me to introduce another concept.

Time-to-Bed
***********

It is WAY past midnight and Time-to-UD should yield free passage to Time-to-Bed

Stay tuned ! And a happy Valentine everybody !

Eric
« Last Edit: February 15, 2011, 06:43:46 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Latest results: (from first yearly Hospital check up, Blood drawn Jan. 24, that is 7 months into treatment)
CD4 : 680
CD4 % : 35%
CD4/CD8 ratio 1.0  (Yeah...)
VL < 40
Everything else: perfect (cholesterol, blood sugar, anal smears, bone density, lung radio, ECG, mental tests, etc)

The report included some comments that cardiologic risk was very low.
The cardiologist did not provide final conclusions, though, as a stress test has been ordered (because of taking ABC).
This will be performed in May.

The report is 3 pages of data...

The overall conclusion by the virologist was: virologic and immunologic response is optimal

She added that I am still CMV neg (thanks Lady... I'd easily trade HIV for CMV, if you'd want MHO   - LOL)

Doc commented that all lights are on green, not a single one on even yellow.

Could not have hoped for any better.

Doc obviously in good mood.

Still does not have a clue for my jaw clunching effect which is now very light but still noticeable, usually after 5 PM.
Typical anxiety syndrome, he said.
I am still on the small dosage anxiolitic. This is the least addictive they have, I take the smallest dosage they have and only one pill a day.
I just don't like these drugs.



Doc teased me and said he'll put me in a Swiss Alps rehab clinic at his own expense if I can't get off this one...

I just hope he keeps to his word and we can go skying together if I am still on it by next winter.

Transit regularity is almost back to its old once a day.

(I also still suffer a bit of depression, but declined any help he was trying to offer.)

Last but not least:

from now on, he has allowed for taking the 2 Viramune pills together, so now, this combo, is, as far as I am concerned,

ONCE-A-DAY ! ! !
****************

Cheers !

Eric
 

« Last Edit: March 02, 2011, 11:25:43 AM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline newt

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

Offline J.R.E.

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Eric,

Everything's looking very good for you  :)      !!  I think it was  back in 2004 or early 2005 ( I would have to check my records),  that I was taking both Viramunes together, with the doctors approval.  I only did this for about a month.

But for me, it was just a little too intense, taking both at the same time, especially for the first few hours, so I switched back to twice a day.  But, once again, that was just my experience, and for me twice a day isn't too bad, and is an easy schedule to maintain.



Good luck----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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Thanks guys for your continuous support !

It is much needed and appreciated, I can assure you, especially since I also have some concerns (and stress symptoms) with some long term effects of the drug.

A recent article on thebody.com  and my yearly hospital check up gives me the opportunity to mention some of these:

ABACAVIR and Increased Risk of Heart Attack:
********************************************

One of the issue that came up during my yearly check up is the potential increased Risk of Heart Attack when taking ABACAVIR.

as I was being interviewed by the cardiologist, he asked the usual questions about family, use of PI, TG, cholesterol etc.
Yet, the issue of potential increased Risk of Heart Attack when taking ABACAVIR was not coming on the table...

May be he is not aware ? (after all, cardiologists have a lot of stuff to learn to keep uptodate) ?

As we were getting close to the end of the interview, I was getting nervous that we were not getting to it.

I was almost to press the issue when he suddenly said:

"evaluation of your risk profile is one thing but the real thing that I trust is the stress test: that is the real deciding factor ..."

I'll have the test done next month.

So, at least my case is left to the odds of statistical risk calculators

The suspicion of an increased risk associated with the use of ABACAVIR is a quite unexpected outcome of the DADS study.

To make a long story short this large international cohort observational study came up with a number of previously identified risk factors but the increased risk associated use of Abacavir was kind of new and standing out.

The additional risk is a baseline multiplier of 1.9 (smoking is a multiplier of 2 to 3)

I was naturally very anxious and reviewed the issue.
After all, if it had not been for a few posts in this forum I would not have been made aware of this. (Many thanks, BTW)

Here, where I live, people are getting a bit sceptical with our official Pharmaceutical Watchdogs about the side effect and risks, because of strong lobbying from BigPharma that tries to protects its industrial interests.

Big Pharma is not our enemy. But it may be in their financial interest to undertune some deadly side effects...

I went onto our local watchdog administration and found a paper on the issue.
it very conveniently linked to a European document, in English:
http://www.ema.europa.eu/docs/en_GB/document_library/Medicine_QA/2009/11/WC500009006.pdf

Both at our local level and European level, the results of DADS have been confronted with data compiled by the drug manufacturer.

The manufacturer line of defense is to collect all the clinical outcomes of all studies involving Abacavir: no increase of risk was observed

No pathway was identified and therefore the (European) Watchdog administration have decided that no warning note should be issued, at that time.

Let's take this document as a baseline for knowledge at the time it has been issued (2008).

In the mean time, while studies trying to relate ABC to traditional risk factors (LDL, HDL, TG...) failed to produce results, some other statistical surveys have confirmed the additional risk.

Some intresting observations are reported here:
http://www.ncbi.nlm.nih.gov/pubmed/19542863

and
http://www.ncbi.nlm.nih.gov/pubmed?term=abacavir+steal
(of note: An increased risk in cardiovascular disease (CVD) was reported in ABC/3TC recipients compared with TDF/FTC in the STEAL study)

a potential mechanism here:
http://www.ncbi.nlm.nih.gov/pubmed/20453628

Until the actual measurement of my arteries has been performed I can only speculate on 'risk'.

The one study that I found very interesting if this one:
http://www.ncbi.nlm.nih.gov/pubmed/20660842

I found it very interesting because:
- it does confirm a additional co existence of ABC use and additional risk
but also
- it stratifies users based on IDU and cocaine usage. and when stratifying, they find NO additional risk for the non drug user (such as myself...)

There are as many reports that claim this additional risk as they arethat are denying it, that I would not be able to participate in a constructive discussion on that matter.
Since this thread is a source of information to many, I simply report the latest available authoritative news:

Trying to sort out the issue, the FDA MANUALLY scrutinized data provided by the drug trials. It is reported here:
http://www.retroconference.org/2011/Abstracts/42436.htm

The analysis made in the following article is, IMHO, using the most appropriate language to wrap up this potentially controversial issue:
http://www.thebodypro.com/content/confs/croi2011/art60708.html

The take-home lesson is:
************************
- DADS has raised a suspicion for additional risk
- FDA has issued a NEED to be aware and a NO NEED to let this suspected effect interfere with the choice of meds (until further notice).

I would not say that settles the issue, but, helps the prospective user (as well as current user) put things in perspective.

Once-daily
**********
I take it once daily now, and I have even shifted it to the morning. It is real cool! Makes it much easier to manage indeed...
Some adjustment time me be needed though... (I have a had a bad night with tachycardia, very bad sleep, stress, etc...)
I had to buy a weekly pill box with larger container

Sunken cheeks
*************
My doc denied it, but, me, I can see like a hole or shadowed area (depending on light exposure) forming.
It seems benign to me at his point, non symmetrical (it started on one side, where it seems to have stabilized, now the other side has it, but less)
In my age range, it goes quite unnoticed, so, well... let's wait until I fully recover from stress/fear/trauma

Often confused, looking for words, lost in speech
*************************************************
It is most likely a result of depression, stress, overwork, anxiety (work and income), I know..., but it keeps my mind circling back to this issue...

You're looking great!
*********************
I Was at a business convention where I meet lots of people that I would meet only on a yearly basis.
I got commanded so many times (indeed, about a dozen) on how fit and healthy I look that I can't help thinking by myself : if you guys knew the truth...
But, hey, I took it as it came. As a compliment that helps me go through this ordeal.

Once again,
***********

many thanks all for your kindness (and nice PMs)

Cheers ! !

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline Inchlingblue

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Did you see the results of a recent study that found no link to abacavir and increased risk of a heart attack?

Offline J.R.E.

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Did you see the results of a recent study that found no link to abacavir and increased risk of a heart attack?

That would be this one Eric:

http://www.poz.com/articles/HIV_abacavir_heart_FDA_761_19965.shtm



OOPpps..... Link not working See next post




Ray
« Last Edit: March 19, 2011, 09:40:01 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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Hi,

If you are refering to the FDA poster at CROI 2011, it is the one  I am refering to in my post here above.
Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
FDA Analysis: No Increased Heart Attack Risk While Using Abacavir


by Tim Horn

Can't get the link to work above


There is no association between the use of ViiV Healthcare’s nucleoside analogue abacavir—found in Ziagen, Epzicom and Trizivir—and heart attack risk, according to a new analysis conducted by the U.S. Food and Drug Administration (FDA), reported Monday, February 28, at the 18th Conference on Retroviruses and Opportunistic Infections (CROI) in Boston.
In February 2008, at the 15th CROI, also held in Boston, a review of data from the Data Collection on Adverse events of Anti-HIV Drugs (D:A:D) study indicated that abacavir was associated with a 90 percent increase in the risk of a heart attack. Six months later, data from the Strategies for Management of Antiretroviral Therapy (SMART) study pointed to a quadrupled risk of a heart attack among those using abacavir. Other analyses seemed to confirm these findings, whereas some studies failed to document any connection between past or present abacavir use and heart attack risk.

Despite the conflicting data, Epzicom—once listed as a “preferred” nucleoside reverse transcriptase inhibitor for use in combination with other antiretrovirals in first-time treatment regimens—was stripped of its preferential ranking by the U.S. Department of Health and Human Services in the November 2008 issue of the federal treatment guidelines, partly because of its possible association with an increased risk of heart attacks.

The FDA has now chimed in with an analysis of its own. The agency’s investigators—known for their strict review of data—analyzed the results of 26 randomized clinical trials involving abacavir. Cohorts, including D:A:D, were not included in the agency’s review, given that it is difficult to adjust data from these studies for confounders (undocumented factors that can skew outcomes).

All studies were conducted between 1996 and 2010 and involved 16 pharmaceutical company clinical trials, five AIDS Clinical Trials Group studies and five studies conducted at academic centers. A total of 9,832 patients were included in the analysis: 5,028 of whom received abacavir, and 4,804 of whom received a competing agent.

A total of 25 heart attacks were documented among those taking abacavir, compared with 22 of those not taking abacavir. According to statistical analyses conducted by the FDA, the difference in heart attack risk between the two groups was negligible and not statistically significant: 0.008 percent.

Even when the agency excluded clinical trials in which no heart attacks were reported—18 studies had at least one report of a heart attack—there was no statistically significant difference between those taking abacavir and those not using the drug.

“A meta-analysis conducted by the FDA based on [randomized controlled trials] did not show an association between increased risk of [heart attacks] and use of [abacavir],” the study authors wrote. They added that only a new clinical trial, specifically looking at heart attack rates among those using abacavir-inclusive regimens compared with those using non-abacavir drug combinations, can settle this controversy once and for all.

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Taking the 2 viramune once a day has really improved my life !

While I may have a bit more of anxiety, now that I have moved the pills to the morning, on the long run, I think I will feel better.

Before, I was taking 2 x a day (one at 7 AM one at 7 PM, along with Kivexa/Epzicom). My stress session would usually start at 5 PM, and even with the light anxilotic, I could have some problem sleeping.

Now that I take it all (that includes moving the Kivexa time) at one time (8 AM), I have noticed that:
- I am a little more tensed during the day
- My stress session will start at 3 PM, take the anxiolitic (sometimes 2 as it can be a little more intense), but less difficulty to get to sleep
- constipation can be quite long 2-3-4 days !

but, for the first weeks in more than 6 months, I have had a few days already with ZERO stress session: gone, nada...

it is a little bit easier too, since Kivexa (aka Epzicom) is a larger pill that require a mouthfull of water, so I usually carried a tiny bottle of water, just in case...
Taking it in the morning, makes it easier.

This time, I am very hopefull that I can have more days without the stress session, which, otherwise was daily ... and depressing.

Somehow, I pretty much understand what Ray meant by saying that the change to 2 viramune together with the Kivexa was too intense for him. But, because there are days where I do not feel anything at all, I hope for the best and like it better this way.
I just need time to adjust.

Or do I ?

May be, I can get the extended realease sooner than I would hope for since the New Viramune XR Tablet has just been Approved for Once-Daily Use by the FDA

http://www.aidsmeds.com/articles/hiv_viramune_xr_1667_20144.shtml

We, guys, will get it a bit later (typically 6 months to a year) since our socialized health system will drag their feet, especially since the manufacturer will want a bit more money for the extended release version.

The great thing about taking it in the morning, it that I do not have to think about it the entire day, do not have to carry pills (I still do, just in case I do not get back home for sleep ;-)  )

Once daily is SO COOOOOL ! (I could do without the entire virus shit, of course...).

I suppose it will be a larger pill too... We will see...

Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline pozoz

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Eric,

I had a good feeling I would see you write an immediate reference to the media release about the new ViramuneXR...

I found it interesting, especially as I am now taking the "old" Viramune "off label"(2 a day at once with Truvada)

The studies seem to show a slight disadvantage to someone like me. Like you I also  have to wait probably 6 to 12 months to get the new ones.

I wonder , from reading this, maybe if I should revert to the one AM, one PM dosing, although since starting I have only done the 2 at once except the 14 day lead in doses. What do you think ??

I have  a LFT soon(2nd one) and am having absolutely no side effects AT ALL, which is really nice..it's nice not to have the occasional bloating, "D" , and other GI issues I had while on PI's.... and taking just 3 pills with dinner is very easy...hopefully soon it will be just 2 pills, once a day!

Glad to hear your doing well ...  stay well my friend...

Seroconverted Aug 2008
Tested Pos      May 2009
May 09 CD4 544 19%   VL 22K
Aug 09 CD4 514  19% VL 25K
Dec 09 CD4 510  20% VL 32K
June10 CD4 502  20% VL 36K
July 5th,10 Start Truvada  Reyataz Norvir July 30  CD4 360  21% VL 339
Oct  22 CD4 459  27% VL 191
Jan 2011CD4 561 33% VL U/D <40
Feb  Add Verimune lead in dose to start switch to Verimune/Truvada  
Mar 17 Viramune x2 + Truvada. Stop PIs   
Apr 29     CD4 528 33% VL U/D
July 2011 CD4 440  %?  VL U/D
Sept 2011CD4 620  %?   VL U/D
Dec 2011 CD4 531 31% VL 224
Jan 2012  CD4 576 36% VL U/D
May 2012 CD4 504 36% U/D (start Viramune XR
July 2012 576 (36%) (test request due to XR issues)
Feb  2013 629  (? %) U/D
July  2013 608 38%.   U/D
Jan  14.    576  36%.   UD

Offline J.R.E.

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Somehow, I pretty much understand what Ray meant by saying that the change to 2 viramune together with the Kivexa was too intense for him..


Eric




Hey Eric,...



Maybe I should clarify a little.  At the time when I was taking both Viramunes together, I was also taking Dapsone and Zithromax.  So basically, I had a lot of shit  going on back then.  My tcells were also less than 200 at that time.

I guess it's kind of hard making a determination, as to whether the two viramunes together,  was causing this "intenseness" , or if  the combination of Dapsone and Zithromax, may have caused some additional side effects.

I probably would go ahead and try once again to take both of them together again, along with the Epzicom,( now that I am off that other medication) if the doctor thought it was Ok.  I never thought about asking again about it, since things are going along fairly well. 

 If I decided to do it that way, I would take them both at 8:00 in the morning, since I would be going to bed, about 3 hours later.  I work the graveyard shift.  I could probably handle that now.


Anyway, once again good luck !!


PS:  Be careful of that constipation.  Have you mentioned that to your doc?   2-3-4 days, is too long.


Ray  8)
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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  • Posts: 1,202
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
I just want my life be like before...

I'm bored with the meds, with the worries, with the sluggish economy, with the wars and disputes.

work, clients, tax fillings, bills, pharmacy, meds, casual (gay) sex are just a necessity of life, that are just getting harder to get along with.

Today was a bright sunny day, spent some time with W, had coffee in our favorite spot, discussed new books, some shopping too...

I was feeling so good... The rest of the day, I fought against the lack of energy and brain fog.

Got back to W and felt good again. Opened a bottle of Champagne and other nice bottles I have. Got drunk.

I 'm drunk and crying. I was the happiest man on earth. I just want my life be like before...

The brain fog was horrendous. I 'm drunk and crying. I know I should feel happy and blessed, but no more the happiest man on earth I used to be.

I just want my life be like before... I just want my life be like before...



 
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline pozoz

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Eric I can relate to this totally and I'm feeling your pain...

I think we all have days like this...the whole HIV/meds/blood tests/doc visits blah blah blah gets very tiring and consumes our lives...it sucks...you are not alone , please be well and keep on keeping on......
Seroconverted Aug 2008
Tested Pos      May 2009
May 09 CD4 544 19%   VL 22K
Aug 09 CD4 514  19% VL 25K
Dec 09 CD4 510  20% VL 32K
June10 CD4 502  20% VL 36K
July 5th,10 Start Truvada  Reyataz Norvir July 30  CD4 360  21% VL 339
Oct  22 CD4 459  27% VL 191
Jan 2011CD4 561 33% VL U/D <40
Feb  Add Verimune lead in dose to start switch to Verimune/Truvada  
Mar 17 Viramune x2 + Truvada. Stop PIs   
Apr 29     CD4 528 33% VL U/D
July 2011 CD4 440  %?  VL U/D
Sept 2011CD4 620  %?   VL U/D
Dec 2011 CD4 531 31% VL 224
Jan 2012  CD4 576 36% VL U/D
May 2012 CD4 504 36% U/D (start Viramune XR
July 2012 576 (36%) (test request due to XR issues)
Feb  2013 629  (? %) U/D
July  2013 608 38%.   U/D
Jan  14.    576  36%.   UD

Offline Inchlingblue

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eric, reality check time: you live in a country where you have health care regardless of whether you have a job or not, right?

That in itself is enough to be thankful for.

I have insurance and I get my meds but if I lose my job I lose my insurance and I lose my meds and I would not qualify for ADAP.


No universal health care here in the good ol' USA.

Offline surf18

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Ah I think were all entitled to a melt down. Eric has good points in his melt down.
Some times a good pity party helpful

Offline eric48

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Sorry for that guys ... That should not have happened and I'll refrain from whining again and concentrate on treatment aspects.

I am trying to keep this thread serious and informative for the prospective and current user user as, I think, there may be more use of this combo in the future.

For example, this once somewhat demoted combo (in the US, the world's opinion leader) is now listed among preferred in London.
http://forums.poz.com/index.php?topic=37089.0

More use, not only for treatment naives but also for treatment experienced patients as part of treatment simplification and cost effectiveness.

For that purpose, I have to document myself a lot, check information before posting, so each post is concocted with care.

The other day I came across some very counter intuitive thoughts that were in the back of my mind from the very beginning of the process. So I kept thinking about the concept and, while my daily life is pretty much back to normal when I am at work and not alone, the stress and brain fog comes back when I am left alone (at the office during the week end).

Some fears can become obsessive and ruin the day. Statistics about treatment failures and percentage of infected fellow humans not able to reach / maintain UD. became obsessive and I was hoping a good drinking would solve it and 'reset' my CPU (it usually works for me). I ended up depressed and (stomach) sick.

Lesson learned. And once again, sorry for that...

induction-maintenance strategy
******************************

The counter intuitive idea comes in the context of modern treatment options. in days past I guess people had to take what was there, on the table, at the time (AZT) and move up to more efficient/convenient/etc. meds, if they could. Or, on the other hand, in case of treatment failure, move to complicated, intrusive regimen.

Times have changed and now there are 'treatment options' which leads to a new paradigm and issue: which one to choose ?

We have a number of stats and analysis that help select a treatment of choice for a given patient profile.

I am not an advocate for this combo in particular, but given my profile and concerns, my doc suggested this one, which, after some initial surprise, I made it MY (educated) CHOICE.

Someone else might have a different 'preferred', some other have no choice...

Some can come to this combo as part of a plausible scenario such as: started on Atripla, moved on to NVP + Truvada if they could not stand EFV, then switch to Epzicom due to some problem of their own with Truvada.

They would end up being, reluctantly, a pill buddy of mine out of 'bad luck' (seen from their initial perspective).

Because there is a choice of option, everyone has a number 1 preferred, then a less preferred, etc. Leading to the possible frustration and fear for a Switch.

In any case, treatment selection, an important phase of the process, is made usually like this:

Your Doc: Given your profile (resistance, sex, lifestyle, ...) I recommend A
sometimes gives you a focused choice (A or B)
You : OK ...

A (of which you might have never heard of until then) becomes your PREFERRED choice.
And the last thing you want is to FAIL on this preferred choice (some of us do not mind so much, but, I would rather think it is a common thinking)

Therefore Doc initiates you on A (your, or his/her, preferred choice)

Makes sense.

And you are anxious about SE and looking forward to become UD ASAP. And here again, you are made anxious to SUCCEED on the initial choice.

So, for modern day, early presenters, with open options, this is a common route.

Your steps are:
1 - selection of preferred
2 - initiation
3 - lots of labs
4 - Fail or Succeed (until you eventually fail, may be 1, 5 or ten years later, or never ?)
5 - switch (to less preferred, unless a better combo comes to the market)

Your doc initiates you on the 'softest' and hopes for the best and leaves it to the odds of your own DNA/destiny and your new companion's RNA.

Seems to me (from reading this forum) the most common strategy.

But given that early failure (within the first 2-3 years) is far from uncommon ( 20 % ?), IS IT the BEST TACTICS ?

I had questioned my doc about this, initially, why start from 'softer' to 'less soft' and not stamp the bug like crazy with 'strong' stuff, at first, then try a softer combo ?

I believe he thought I am really twisted (played pool too much, I guess)

Now that I am so happy with the combo, the fading SE, the once-daily, the labs, I have a new source of anxiety: stay on it as long as possible.

and the conterintuitive (obsessive) thoughts, is that, may be, in order to optimize my chances to stay longer on MY combo of choice, I should not have started with it at first, but rather schedule-switched to it.

Make the switch the ultimate GOAL and NOT the punishment/failure correction

What has revived this conterintuitive strategic thinking is the current switch by POZOZ:
http://forums.poz.com/index.php?topic=36800.0

and the reading of this:
Could Switching HIV Therapy Early Avoid Treatment Failure?
http://www.aidsmeds.com/articles/hiv_treatment_switch_1667_20181.shtml

and the original article:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0018204

So, while I was expecting that this combo would make it back as a fashionable first line strategy, I am wondering if it would not find a better place in a more comprehensive, scheduled induction-maintenance strategy.

As far as I am concerned, it is too late, I am on it for as long as my new companion stays dormant.

I have no question that this combo was tailored to my profile.

Whether my current initiation strategy was the best, only time and research will tell...

A bit of recent flue like and fatigue raised my anxiety level, being left in the blind until next blood test...

But I am feeling better now. The weather is fine and had some nice 'encounters'

Cheers!

Eric
« Last Edit: April 08, 2011, 07:33:22 PM by eric48 »
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Offline eric48

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No big news, but something I learned in reading :

A "New" Antiretroviral Option Quietly Enters the Market
http://www.thebodypro.com/content/art61670.html

(while the article reminds that NVP is (usually) (*) not for women
CD4 counts >250 cells/mm3 and men with CD4 counts >400 cells/mm3
I remind here that this is true for treatment NAIVEs ONLY. The European Agency has lifted that ban for treatment experienced ) (* usually, or normally, whatever... since my doc disregarded this recommendation and initiated me to NVP eventhough my Nadir was 440, I never had a lab below 400)

What I did not know is this:

...the possibility of nevirapine coming off patent in 2012 (which creates potential for a lower-priced generic)...

I think a generic already exists but not sold in 'rich' countries

I suppose it can be a matter of consideration for switch / maintenance strategies

Cheers!

Eric

(note: constipation GONE / stress fading (noticeable but bearable), but, muscle twitching up and depression is up too...)
« Last Edit: April 27, 2011, 06:08:52 PM by eric48 »
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Offline eric48

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moderate signs of sensitive axional neuropathy
**************************************************

For months now I suffer from lower leg muscle twitch. It simply never stops. 24/7
I have not mentioned it before because it is benign and often associated to stress, which I have all the symptoms of. (although I suspect it is the meds...)

I went to a lab for an electromyogram (?) where they measure nerve responsiveness.

I have been diagnosed for moderate signs of sensitive axional neuropathy, with no functional neuropathy.
The doctor, there, commented that it may explain the twitching, although he sounded very doubtful.

When the electricity ran through my legs some of the reactions where more sudden than the doctor expected:

Me: sorry for that... I 'm a little tensed
The doctor : Oh ! ? Are you ? I had not noticed , LOL

I'll have a blood test and stress test at the cardiologist soon, then go to my doctor and we will see what he says.

Otherwise, physically speaking I 'm OKAY. I have a stye (I am remodeling and there is a lot of dust around), no big deal I suppose.
The neuropathy thing has been a matter of concern for a few days, but honnest, I do not feel anything at all.

I have a hard time staying awake at work, which my doc says are signs of depression.

Taking the meds is just easy enough and full part of my routine, now.
I am not as worried as I used to be. The tension on the jaw is always there, but, slowly, slowly fading.

Recently, I have been reading a bit more about the latest breakthroughs in science that may lead to a functional cure, which I now believe will come sooner or later.
I have caught myself day dreaming about the cure, retirement or becoming a grandfather, and , why not ... a BF.

The economy is no fun, my work is no fun, aging is no fun. I guess that is what I need : FUN.

That will come... But, first, I have to finish that tax report on my desk (I hate THAT)

Cheers! Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Side effects: lower leg muscle twitching (stress ? ), tension on the jaw, still detectable, but really very close to the unnoticeable threshold.
Constipation: gone, sleep good most nights (w/o sleeping pills)

went to the lab for blood tests then Went back to the hospital for the cardio stress test, which is part of the yearly check up.

The cardiologist in charge was in pretty good mood as he saw me painlessly perform the bicycle test. As the break makes is harder with time some people have to stop before the end of the test.
But every thing went fine. I guess they see a number of people sent in with serious heart condition, which must be quite depressing.

Got a clean bill on that one and said that there is no reason to investigate any further. I did mention that the reason for concern was the Abacavir I am taking, which he confirmed he had seen on my file.
He said everything was as nominal as possible and could not be any better, so I should feel reassured. Good...

The blood test results came back the very same day (that's fast...).

cholesterol/LDL/HDL/TG/Blood sugar/glycated hemoglobin/all minerals/vitamin D/complete liver panel/etc.

Everything came back nominal (e.g. LDL: 130 / HDL: 70 / TG: 56 /A1C: 5.3%)

Now, let's scroll down to the hardcore stuff:
CD4 % : 30
CD8 % : 40
CD4 : 640

So that is same as last December (a little less than January, but January test was not done in my usual lab...)
CD4 count is slightly down, which does not worry me because a plateau in CD4 recovery between months 6 and 12 is not unusual
(at least, this is what is explained here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC25839/?tool=pubmed
figure 3)

Then came the unexpected number : the VL ...

Since treatment target is 50, our hospital detection limit is 40, I was not expecting the commercial lab I am using to bother much further.
My last VL (in this lab, in 12/2010) was 48, which I thought simply meant below 50 (and we do not bother go any further)

In fact they do... They use a Cobas Taqman. I did not bother ask how low it is supposed to go. I think the latest version (is it 2.0) must be going as low as 20, now that I have my lab results in front of me...

One would hope that, at long last, I would read something like UD, or <20 or 0 (the hospital reports it as 0, which, I was told means below 40)

Well... NO !

If you listen carefully, you still hear my virus vanishing into blue sky, faint signal, but still detectable as it came back as:

VL: 24 !

I got really thrilled, as this comes pretty much in line with the slow, logarithmic, decay which is a personal characteristics of my own case.

It's like seeing the last waiving hand from a train window as it is disappearing in the sunset.

I just hope it travels with a one-way ticket...

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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I have commented hereabove that 650 is kinda low (compared to previous values)

The aim of treatment is to restore the immune system as close as possible to its pre-infection state.
Problem: I have no idea what my immune system  was like...

So the closest substitute is to see if it restores as close as possible to normality.

Problem: What is a normal CD4 count? (the most common stratification seems to be <200; 200-350; 350-500; >500)

I have been looking through the Intenet and found various answers including on this (well documented) site, but I wanted to find some more scientifically solid information.

This question because I read the following comment from famed Mari Kitahata, MD

http://www.thebody.com/content/confs/croi2009/art50496.html

I quote:

... a threshold of 500 -- which, remember, is not near normal -- is associated with significant improvement overall ...

referring to 500 as being a stratification for a safer zone,she had commented:
500... is NOT near normal.

Then what is normal ? and more over what is 'normal' and relevant to me (and to some extend to the reader)

Doing my homework here below are a few findings I made and which I can back up with the relevant, freely accessible, medically sound papers

Normal and not normal
*********************

Normal would refer to values in a population that does not present a pathology
Target (or aim of treatment) can be different.

For example, the reference range for non diabetic person A1C is less than 6.5 % (values may differ depending on location, age, doctor, etc)
Yet, a diabetic who is able to take control (insulin, etc.) and has a A1C of 7% would be deemed as 'normalized', because, given his/her condition, this is very good.

This to say, that, in the discussion below, I am not implying that 500 is a target or that 350 is below target or what so ever.

The discussion is about how the medical community (as a whole, not only HIV specialists) define a normal range.

But what is KNOWN about CD4 count in HIV negative population ?

A side note before I start: I have read in numerous posts, here, that CD4 count may vary greatly, as much as 100, during the day (morning/evening)
I have not found any reference to this, when looking through scientific papers.
Nonetheless, it is quite obvious to me that the instantaneous immune profile snapshot may depend , for a while, on one's current state of health (fatigue, stress, small illness, pregnancy, vaccination ...)
I have personal evidence that the same lab, on the same person (me), on the same blood draw, ordered by 2 different doctors, came back with a total lymphocyte count differing by 5 %.
So one has to be carefull when comparing one's data to the reference range.

Okay, back to
the reference range...
**********************

What is known (and documented below) :

- young children, teens, adults (young and less young alike), elderly are different clusters
- ethnicity plays a role and reference range may be different in various part of the world and/or broadened in areas with more ethnic diversity
- females have a slightly higher value
- sports/no sports does not affect much the statistics
- smoking and chronic (benign) infections affect the absolute count and percentage.

Most people do not know their CD4 count prior to infection (one post in this forum mentioned a value of 800 for someone how had a preinfection value due to some other condition (transplant?)
Which is why the reference range is of importance, in the absence of prior values.

Ethnicity/localisation/socioeconomics
**************************************
Let me put this out of the way quickly. The relevance of Ethnicity/localisation/socioeconomics is clearly demonstrated in this
freely available paper:

http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-86702009000300013&lng=en&nrm=iso&tlng=en
(Reference range for T lymphocytes populations in blood donors from two different regions in Brazil)

There are not too many reliable, free sources of data around...
So, it is not the aim of this post to clarify this point in detail, for every situation.

If the reader does not mind, I have therefore concentrated my research on finding data on people that match my profile most.
Anyone is free to look for data matching his/her profile most.

You might think that the reference range would appear on my lab sheet (as do cholesterol, TG, etc). This is not the case.
This lab has a large clientele of HIVER and avoiding publishing a reference range demonstrates a sense of tact.

Being White male in a favorable socioeconomic environment, the freely available dataset which I found closest to my profile is the data published by Italians in hematology papers:

(An Italian national multicenter study for the definition of a reference
ranges for normal values of peripheral blood lymphocyte subsets in healthy adults)
http://www.haematologica.org/cgi/reprint/84/6/499

The article is free, very detailed and based on large, consistent database.

It explains how the data was collected and how the reference ranges (for Italy) was determined.
Similar data are available for various countries, I suppose. This one, at least, is freely accessible.

Mean and Median values
**********************
One has to be a bit carefull here: some articles refer to the mean value and others to the median value.

the (arithmetic) mean is calculated by summing the total of all values and divide by the number of individuals.
The median this is value at which 50 % of the population is below and 50% is above. It is the most probable value you will find if you blindly pickup someone in the street.

If the distribution is perfectly Gaussian and symmetrical, the mean = the median
if it is NOT the case, then the mean and the median are different (the median being lower)

When mean and median are similar, it does not matter much and one can be taken in place of the other. (the non-symetry effect is less visible if the population (cohort) is small)

When looking at a broad population, as being done in the above paper, and in the case of CD4 it is obvious that the distribution is NOT symmetrical

Wheres it is possible that someone may have 2, 3 times the mean values (i.e. the mean plus one or 2 times the mean), it is impossible to have negative counts.

In other words if the mean is 100, it is quite possible to find people with 200, 300 , but not with -1 or -100 (at least certainly not in the general population of the living ;) )

For this reason, whenever available, one should rather look at the median value (the most likely value) and use the mean, only when the median is not available.
 
results for an Italian of my age (M and F) is:
***********************************

Median (the most likely value) CD4 is 885.

The reference range for CD4 count is 496-1666 and for CD4 % : 32-61; median CD4 count is : 885
The reference range for CD4 count is 224-1112 and for CD4 % : 14-43; median CD4 count is : 511

The most graphic evidence is given here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851216/figure/f1-blt-08-118/

and comes from an other Italian paper:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851216/?tool=pubmed

Side note: since the lower limit of the range is 496, it is quite obvious where this stratification 'magic' number 500 comes from.

Is 885 the most probable value I had prior to infection ?

Not quite... It would require that I correct for gender, smoking status and other conditions...

Which I will do in a next thread

I need to go sleep, I'll count CD4s to help, 1 CD4, 2 CD4s, 3 CD4s,...

Sweet dreams !

Eric
« Last Edit: May 21, 2011, 07:54:00 PM by eric48 »
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Offline eric48

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The reference range for CD4 count is 496-1666 and for CD4 % : 32-61; median CD4 count is : 885
The reference range for CD4 count is 224-1112 and for CD4 % : 14-43; median CD4 count is : 511

Sorry for the typo and too late to modify... One should read:

The reference range for CD4 count is 496-1666 and for CD4 % : 32-61; median CD4 count is : 885
The reference range for CD8 count is 224-1112 and for CD8 % : 14-43; median CD8 count is : 511

Sorry for that... Eric
(I'll prepare something for gender and smoking adjustment next week)
« Last Edit: June 04, 2011, 04:47:28 PM by eric48 »
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Offline eric48

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After adjusting for traditional factors...
*******************************************

How many times haven't we read this generic phrase.

Know this game on TV ? contenders are presented a basket of items and must guess the right price. the closest answers wins...

CD4 themselves come in several subspecies... it a mix bag of naive, memory, effector, what have you...

Based on the above thread, should you pick an adult Italian in the street and been quizzed about this person CD4 count the answer that gives you the highest winning chances is 885 (see median value, table 2).

Now, if you refer to the above article, the TV staff tell you about the persons' gender and smoking status.

Table3  gives the mean values (M: 902 F:989), this is quite consistent with the mean for M+F (940) since (902+989)/2 gives 946. That one is easy since there are about 1 M for 1 F
Men have 44 less on mean value and Females have 43 more...

The article does not provide median values (which are in fact your best bet), but, in the absence of better data, and under pressure of the TV staff, your best choice is to adjust the median value by
44 x (885/940) = 41

Adjusting for gender
********************

You best bet is : M : 844 and F : 926

This was easy enough to calculate because the proportion of M to F is about 1:1.

Adjusting for smoking
*********************

A more tricky one is the adjustment for smoking status.
The mean for smokers : 1044 Nonsmokers: 904, a difference of 140 ! quite consistent with number found in other sources.
This is quite expected since smokers statistically have a higher number of Leukocytes, of which lymphocytes are a subset (source: my doctor...)
In order to win the TV game one would have to adjust knowing the smoking prevalence in Italy.
It is about 25% (source: http://www.ncbi.nlm.nih.gov/pubmed/21421001)
This is quite consistent since:
(1044 x 0.25) + (904 x 0.75) = 261 + 678 = 939 (close to the average smokers+ non smokers of 940)
let's adjust to the median values:
Smokers: 104 x (885/940) = + 97
non smoker= -36  x (885/940) = - 34

So you best bet matching a profile:
Smoker M = 885 - 41 + 97 = 941
Smoker F = 885 + 41 + 97 = 982
nonsmoker M = 885 - 41 - 34 = 810
nonsmoker F = 885 + 41 - 34 = 892

Adjusting for weight
********************

A more tricky one is the adjustment for weight since being overweight significantly increases the values. Unfortunately, the overweight/normal is not clearly defined and its ratio in the Italian population is unknown to me.
some indications can be found here:
http://www.ncbi.nlm.nih.gov/pubmed/21338556
and here
http://www.oecd.org/document/60/0,3746,en_33873108_33873245_46038716_1_1_1_1,00.html

Overweight : 1046
Normal: 926
a difference of 120 !
Let's keep it simple and assume a 20:80 ratio
(1046 x 0.20) + (926 x 0.80) = 209 + 740 = 949 (quite consistent with the mean for all of 940)

Let's adjust the median:

97 x (885/949) = +90 (overweight)
23 x (885/949) = - 21 (normal)

A non smoker Italian male, not overweight most likely CD4 count is : 789 ...

So, if you do not know your pre-infection CD4 count, you can still play the above.

Does it really matters ?
*************************

Not really, since diversity is in the essence of mankind and someone who is 4/11 (1.50 m) is just as 'normal' as someone who is 6/3 (1.9 m) tall

It does not really matters but it is FUN!

(and please do not sue me on the above, it's just a guess game)

And if you like FUNNY, yet serious reading, do not miss:

CD4saurus Rex & HIVelociraptor vs. development of clinically useful
immunological markers: a Jurassic tale of frozen evolution.

http://www.translational-medicine.com/content/pdf/1479-5876-9-93.pdf

It is well documented, entertaining and helps put in perspective the classical strata <200; <350; <500; > 500

"We don't do body counts”. (General Tommy Franks)
"We only do CD4 counts" (My doctor)

We sure care about counts !

Have fun

Eric
« Last Edit: June 25, 2011, 08:12:04 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline J.R.E.

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Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline newt

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Except the study in the link is underpowered to capture rare events like heart attack *perhaps* associated with abacavir.

I have no doubt abacavir is an equal option to tenofovir in terms of viral suppression in most cases, albeit with different risks and benefits. Someone somewhere needs to square the findings on abacavir and viral load from other studies and increased risk of heart attack from DAD (the only study designed to capture rare adverse events) with other studies not demonstrating these outcomes.

In the UK, well London, abacavir is first-line, preferred over tenofovir now, except for people with high risk of heart attack, viral load of 100k or more or who are potentially allergic. This is on the basis of cost. It seems a fine enough solution.

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

Offline eric48

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Thanks guys for chiming in... This article sounded like some sort of a revenge for the 'demoted' and a confirmation of my doctors hunch that it would make its come back...

this other article:
http://www.thebody.com/content/62704/abacavir-agonistes.html

helps understand why there are two clusters of peoples:
- those who have recently been proposed to start this (once demoted) combo, and because of various reasons, may feel very uncomfortable with this one combo
(that would include myself)
- those who have started this combo long ago and are apparently doing very well (such as Ray and a few others who have contributed)

A new cluster are those switching to this combo for simplification/maintenance, etc. The reports on this forum have been very positive.

There is so few patient testimony about this combo that I hope this long winded thread may help fill the gap.

Abacavir / Nevirapine and cancers:
**********************************

Strangely enough the DADS study that triggered the unexpected ABC cardiovascular controversy also confirms the (expected) positive effects of NVP.

- NVP has a propective effect and the proposed pathway: it its up-regulation of HDL
- ABC a a 'suspected' (and contested) negative effect, and no pathway has been proposed.

Go figure...

The interesting thing is that 2 other little known benefits (pathways) of NVP and ABC have been observed by researchers:

Both NVP and ABC have demonstrated strong efficacy in fighting some cancerous cells:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782444/
The anti retroviral nucleoside analogue Abacavir reduces cell growth and promotes differentiation of human medulloblastoma cells

which concludes: ... that the use of ABC, [...] could be an effective therapeutic strategy, alone or in combination with current therapies, for the treatment of telomerase expressing tumours, such as human medulloblastomas

http://www.ncbi.nlm.nih.gov/pubmed/19152342
Nevirapine restores androgen signaling in hormone-refractory human prostate carcinoma cells both in vitro and in vivo.

they both are considered as potential efficient drugs in fighting some cancers (including the quite common prostate cancer)

It is therefore intriguing that the observational DADS studies has not, thus far, shown any such effect.

But for the 'older'(male) individuals (like yourself and myself) and propective users, this may be worth knowing

Thanks again

Eric
« Last Edit: July 08, 2011, 06:21:53 PM by eric48 »
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Offline Ann

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My doctor ruled abacavir out as a possible med for me. Although I passed the sensitivity test, he ruled it out for several reasons - 1) my age (48), 2) a history of hypertension in my family, 3) being a smoker for around 30 years and 4) I have mild Reynauld's (a circulatory issue). I'm going to have to quit smoking one of these days. :-\
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Offline J.R.E.

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Thanks Matt and Eric !

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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Dr Paul Sax concludes in :

http://www.thebody.com/content/62704/abacavir-agonistes.html

-----
It seems advisable to avoid using abacavir in patients with high cardiovascular risk if there are suitable alternatives (which there usually are), but that stable patients already on the drug should remain on it unless there’s a compelling reason to switch.
-----
This patient (me...) opinion is indeed that one has to feel confident about the ticker before starting treatment. I have experienced very sudden drops in in BP or acceleration of heart beat for the first few months. I was quite scared... So scared. Its gone now, but I vividly remember the tough times.

While it seems reasonably acceptable to postpone treatment initiation based on CD4 and VL history, because these are still strong medication anyhow, it is also reasonable to think that the first few months can be physically and emotionally demanding... Sometimes I think I could have waited a few months/years.
The more I think about it the more I think people who prefer to delay treatment have a point.
But, whatever health issue you may have, you damn want to get it undercontrol (and hopefolly behind you) before you turn 50. After that, it just gets tougher to recover or adjust.

Yesterday my son got his university entrance exams results. He passed with honors.

I hope he can make it all the way through MD. He says he wants to become a virologist... We will see...

I need to keep going for another 10 years to see that happen.

If he does, I am quite sure he is going to be quite shocked  when he meets with his first patient. LOL

Cheers ! (this cheerfull note being dedicated to my son, who, BTW, is also a real cuttie)

Eric





NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #86 on: August 03, 2011, 07:13:28 PM »
Adjusting 'normal CD4 count' for other health conditions
********************************************************
(A follow up to:
http://forums.poz.com/index.php?topic=33062.msg481999#msg481999
)

The article here:
A comparative method for processing immunological parameters: developing an "Immunogram"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851216/?tool=pubmed

states:

Furthermore, it is possible to search for associations between different groups of immunological parameters [...]; associations between immunological parameters and positivity or negativity for viral infections (EBV, CMV, HSV, VZV, HCV, etc.) can be revealed; and associations can be searched for between immunological parameters, life styles, current and previous therapies, vaccinations, etc.

In other words that it should be possible to go further into adjusting for other health conditions

There is currently intensive research trying to link the status of immune system to emerging/occurring/resolved cancers.

Pretty much like some viruses, it is hyposized that some cancers have 3 phases:
- initial mutation that create the seed cancerous cells
- identification (or not), eradication (or not) by the immune system, resulting in either elimination or steady state low grade survival of cancerous cells
- if successfull to somehow survive the immune system, further mutates until able to escape and grow exponentially (bad news...)

Some viruses, as well, live in steady state equilibrium with the immune system, which is able enough to control the virus at the expense of ongoing immune system activation.
Eventual immune system exhaustion leads to rupture in the steady state and virus winning over. (our cherished virus being a good example...)

this is why there would be a possibility that some cancers behave in a similar fashion:

While most medical research aims at restoring the immune system to a normal level the article here:

CD4saurus Rex & HIVelociraptor vs. development of clinically useful immunological markers: a Jurassic tale of frozen evolution.

http://www.translational-medicine.com/content/pdf/1479-5876-9-93.pdf

(which is real fun to read)

strongly invites not to look only at CD4 count restoration a healthy ('normal') level, but also at the preinfection level (which is unknown)

I have therefore digged into the available medical literature for existing work that would allow to adjust the preinfection Immunogram to preexisting or coexisting infections.

In other words if it is statically sound to adjust the 'normal' CD4 count (median : 880 for an Italian adult, for example), for gender, smoking, overweight status, is possible to adjust for other known infections (VHC, VHB, etc.)

Thus far I have NOT FOUND ANYTHING, and the announced Immunogramma software does not seem available on line (as of Aug. 2011)


Why Adjusting for known factors may become more important in the future
***********************************************************************

IMHO, it may because more important for the patient in terms of meds initiation decision.
Those years where the recommendation for starting meds was CD4 <200 it did not matter to evaluate if the immune system is damaged by 10, 20, or 30 % because it is in fact severely damaged. Period.
As the trigger value raises (350, and more recently 500) it matter more as the higher the value the weaker gets the medical consensus and the higher gets the patients involvement into this decision, obviously.

As long as the trigger value is 200, it does not matter if you are an overweight, (white), smoker female (median adjusted CD4 count: 1072) or a slim, non smoker male (median adjusted CD4 count: 789), because 200 is low anyway.

but if you consider 500 as your decision or trigger value, and that your most likely preinfection CD4 count (after adjustment) is 700, damage is only 30 %
but if your most likely CD4 count (after adjustment) is 1000 damage is already 50 %.

For overweight, (white), smoker female a trigger value of 350 is 30% of her 'normal' value (damage = 70%) whereas the same trigger is 50% of 'normal' for a slim, non smoker male (damage is 50%)

Using the same initiation thresholds for women and men (as it is in socialized healthcare) may bias treatment decisions more favorably to men and the consecutive delayed treatment for women may account for the surprising higher loss of life expectancy, in successfull HAART, for women as compared to men.
  
Just some thoughts...(and sorry for this long development)

Eric
« Last Edit: August 03, 2011, 07:53:14 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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UD ! (at long last...)
« Reply #87 on: September 21, 2011, 05:56:31 PM »
UD ! (at long last...)

With VL at 24 (May  2011, 11 months into treatment), there was no doubt this was coming!

It has been a long wait... I guess I should raise a flag or wear a badge of some sort (I bought myself red shoes instead)

(the wait has been sooo long, I guess my sparkling wine has no bubbles anylonger ...)

as of Sept 19 2011 (15 months into treatment)

VL < 20 (Taqman Cobas)
CD4 : 738 (37%)
CD8 : 678 (34%)
CD4/CD8 ratio: 1.09

Everything else (cholesterol, sugar panel, liver panel, vitamin panel, what have you..) WITHIN range.
(only CPK stands out at 554, we will see what Doc has to say about that...)

Neuropathy diagnosis in the legs has been reversed after reexamination by another (HIV experienced, this time) neurologist (who had put me on vitamin B12 three months ago). Note: this B12 worked magic on me!
No sign of no-nothing he said !
(the exam was a bit long and I bursted in tears towards the end, which he said THIS is something I definitively need to address, he was kind of shocked because he knows of all the good news, but still I could not help it)

Constipation under control (thanks to lots of fibers and good advise from this forum)

So it is UD , UD , UD ! ! !

CHEEEEEEEERS

Eric

PS: My strength lies solely in my tenacity. (Louis Pasteur)
« Last Edit: September 21, 2011, 06:03:29 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline J.R.E.

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #88 on: September 21, 2011, 06:07:42 PM »
 :)

Fantastic Eric--Great Numbers !!!!


Cheers---Ray  8)
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #89 on: September 21, 2011, 06:13:06 PM »
Thanks Ray,

I knew you would chime in. Been thinking of you a lot lately.

I owe you one for your continuous support!

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline Inchlingblue

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #90 on: September 21, 2011, 08:15:39 PM »
wow Eric, congratulations!

I'm confident you will continue doing well (based on your thoughtful approach and the fact that you live in a country that offers it's citizens health care).

Offline Assurbanipal

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #91 on: September 21, 2011, 08:29:01 PM »
Congratulations Eric!  It has been a long wait for you.

A
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%

Offline eric48

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Neuropathy: to be (in pain) or not to be...
« Reply #92 on: September 30, 2011, 06:33:02 PM »
Neuropathy: to be (in pain) or not to be...

During winter I started having pain along the leg nerves and had a hard time sleeping.
I talked to my doc who ordered a nerve test at A neurologist. Which I did. I was really feeling the pain, not a fake.
On top of that, I have muscle twitching on the legs which is VERY visible, 24/24, 7/7 since Aug.2010.

That neurologist did some test with needles, etc... and diagnosed: moderate signs of sensory neuropathy.

With this in hand was referred to THE head-HIV-experienced-neurologist. The interview followed a very unexpected path:

A- he said that the neurologist who performed the first test is a nice guy who does not know his ankle from his knee.
B- he was NOT going to pursue the issue until I have gotten the nerve test by his favored neuropathy specialist (he said there are hardly a handfull of doctors in the entire continent who can really diagnose neuropathy...)
C- when I told him I was put on viramune + Kivexa because of the supposed better blood/ brain barrier penetration, he went into some sort of a tantrum, saying this belief (of my doc) is pure BS...
D- I ventured into discussing B12 vitamin (something I had learned on this forum ...): he silenced me right away, saying that he had already included B12 supplementation on the prescription he had on his desk for me.
E- he ordered Vit B1 , B6, B12, E dosing, saying that was just in case, because the 'limits' are not well identified anyway
F- said that my neuropathy (if any) was more likely due to my sub clinical diabetes than HIV.
G- As I was whining about the slow VL decay (I was not UD at the time...), he said "you might just be better out this way altogether, as faster decay goes alongside other problems down the road"
H- was ecstatic about my numbers/blood panel/labs.
I- in this mind, V&K is not known for being neurotoxic, and I should be fine with this 'eccentric' combo
He waved me off with a prescription for B1/B6/B12/E panel (which came back within 'range'), a new nerve test and B1/B6 + B12 oral supplementation.

A few months later (during summer) I noticed that I was noticing nothing at all: the nerve pain gone (the better wheather may have helped)

On the day I went for the nerve test by his favorite colleague, he happenned to be in the lobby. I was so relieved by the disappearance of this nerve pain that I kowtowed dutyfully.
He commented that, while most HIV specialist will not believe in the benefits of B12, he, being old timer, old school, believes in it and was happy it seems to work for me.

Then I got the new nerve test.
 
It lasted for more than one hour (a little more than I could handle and bursted into tears after one hour of being martyred by this (cute & young) doctor into a modern day San Sebastian).
This one concluded that there is no such thing as the faintest sign of neuropathy.

He scolded me somehow for being over sensitive to the HIV diagnosis, that I should move on etc. etc. (I wished he'd hug me tight, but, that, unfortunately, did not happen...).

Wrong diagnosis, better wheather or beneficial B12 ? I 'll never know, but at $ 5/month for B12, I'll stick to it for a while.

Cheers!

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #93 on: November 12, 2011, 04:48:50 PM »
My quest for further information in order to adjust 'normal' CD4 (and other markers) range to the patient's specifics has NOT been very fruitfull. <shrug>

Transient changes in Immunogram:
********************************

The immunologic response to an acute infection results in a such rapid expansion of CD4 or CD8 or NKs that the proportions of each populations can be drastically affected

If interested in the changes induced by an acute infection you may want to read this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912311/pdf/1471-2334-10-205.pdf

I may, in a previous post, have sounded skeptical about the usual comment that CD4 count can vary significantly during the day, as I had never found any reference to this in the scientific literature.
Somehow, I may have make it sound like some kind of urban legend among HIVers.
To be truly honnest, I have recently found a study that describes the phenomena with a scientific approach.
It was done in a specific settings, yet, it seems a good enough reference:

Timing of blood sampling for CD4 T-cell counting influences HAART decisions.
http://www.ncbi.nlm.nih.gov/pubmed/21991752


Profound changes in immunogramm resulting from a chronic condition:
*******************************************************************

A chronic condition establishes a steady state between itself and the immune system fighting it.
The 'ennemy' evolves to overcome the immune system (or at least establish a stable 'frontline' until it can find a breach)
As a response, the immune system evolves to overpower the intruder and adapt to the successive attacks from the enemy.
We are, after all, the 'healthy' carriers of multiple viruses, bacterias and sub-cancerous cells that are potentially dangerous but are kept in check by the immune system.

This is quite complex and her is a good ppt presentation
http://www.cancer.gov/cancertopics/understandingcancer/immunesystem/

Especially page 20... Furthermore, CD4 and CD8 come in various subspecies (memory, naive, effector...)

It is now widely accepted that chronic steady state with some viruses, mainly ubiquitous herpes type viruses, affects the relative composition of these subspecies,even in the general population.
See:
http://blogs.poz.com/joseph/archives/2011/10/hiv_and_herpes_virus.html
or
http://blogs.poz.com/joseph/archives/2010/03/cytomegalovirus_othe.html

While there is now abundant literature about how they can affect the subset and hints that this may affect healthy aging, there is quite little about how they affect the CD counts themselves

The only reference I could find is relative to CMV.
****************************************************

CMV is highly prevalent among HIVers (as high as 98% in some cohorts) and not harmfull per se (for the immunocompetent adult).
Nonetheless, the very few who are CMV negative should know that CMV negative individual have generally speaking lower CD4 and lower CD8 counts that their CMV positive counterparts
The numbers (but not the subset) tend to come closer as we age, yet the difference is quite significant and very graphically documented here:
 
Differential effects of age, cytomegalovirus-seropositivity ... on circulating T lymphocyte subsets:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024293/?tool=pubmed

The interesting part is on hte 'healthy' controls (not the patients with renal complications)
The most interesting data is in table2:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024293/table/T2/

for a younger person (20-40)
--------------------
CD4+ :   490 if CMV-   860 if CMV+  (*)   
CD8+ :   230 if CMV-   420 if CMV+

(*) very close to that 880 value used a few posts up

for an older person (>60)
--------------------
CD4+ :   630 if CMV-   630 if CMV+ (thus, identical)      
CD8+ :   220 if CMV-   340 if CMV+

(note: the number of individuals in this study is rather small, it should be used with caution)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024293/figure/F1/
diagram A and B provide the age related trends.

At my age (about 50), the CMV neg, (otherwise healthy) person has a CD4 count in the 600s vs the 750 for a CMV+ (otherwise healthy): that is still a difference of 150 !
and CD8 is 250 vs 400

The difference is even more dramatic for a younger person !

As I am CMV neg, I wished I had known this before making the decision to go on meds!

(Well... my age was the real deciding factor, but still !)

I haven't found much more and I guess this may be my last post on this issue.

I hope that the few posts above will be of some help to those readers interested in understanding what is a 'normal' count, adjust to their specifics, see how far off they are before and after treatment...

Later, I'll explore if there are options to tune up the immune response

Cheers!

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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A B! it is a B!
« Reply #94 on: November 13, 2011, 04:12:00 PM »
A B! it is a B!

Pill buddy on this thread, who had been stable for many years, got a UP in VL a few month ago , but back to UD now!

It is a Blip !

I can share the sense of relief, but, honestly have never doubted this combo (nor his adherence to it).

People at the clinic where kind of implying (they never say anything final, 'cause you never know) that people who are stable under this combo seem to remain on it sort of forever.

Except for the very first months (which can be considered risky) it seems there there are only few drop outs.

This is one of the reasons I preferred this one (which, at the time, was a bit demoted).

I was dreading a switch, but with the mental issues (anxiety) I keep having, well... I do not know...

At least the good news is : It is a Blip ! Buddy ;-)

Which raises another interesting question: can a blip be voluntary (and safely) triggered ?

(a personal research subject I am currently actively pursuing...)

Cheers ! Cheers! cheers!

Your Friend, Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #95 on: December 05, 2011, 06:22:23 PM »
Blips and reservoirs are a hot topic !

At least the venue for the upcoming conference held by the experts in the field seems a nice place to gather in these times of cold weather and budget cuts...

http://www.informedhorizons.com/persistence2011/index.html

Hope we will get more than just nice pics of CD4s resting on the beach!

(I was planning to go, until I noticed that Dr Robert Siliciano is not a listed speaker....)

Eric
« Last Edit: December 05, 2011, 06:50:03 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #96 on: December 29, 2011, 06:42:14 PM »
A bit more on 'normal CD4 counts'
*********************************

I wrote that I would not come back to the aspects of what 'normal' CD4 count is, but, in the interim I found a free available article which seems to have been the reference article on this, some 20 years back. The values in that article and the discussions are worth mentioning, at least for their historical value.

it can be found here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554313/pdf/clinexpimmunol00049-0059.pdf
Laboratory control values for CD4 and CD8 lymphocytes...

Tweaking treatment ? why bother?
***********************************

Let's move on to 2 subjects of interest, now that I have finally entered phase 3 of viral decay, that is the one where the virus is UD but remains in reservoirs.
(and find my way to phase 4, the actual eradication)

One is: can treatment be tweaked towards better immunologic recovery. Better CD4 counts, CD4/CD8 ratio, etc.
and the second is can treatment be tweaked towards further reservoir reduction

Whether the above is, or not, of any clinical impact for hivers in general is beyond my point here.
Admittedly, as long as you make enough $$ to live decently, what is the point in earning more (optimizing one's revenues)? after all... (*)
As long as you reach and maintain UD and have decent numbers, why bother?
(*) easy for me to say, as I have just earned by highest annual income ever, by far, and, waoh, it does feel good ;-)

One of MY reasons this that I want to enroll into a trial.
 
So whether this is worth sharing here, I do not know...
I have not yet discussed it w/ doc.

When cure (or cure ersatz) or efficient treatment optimisation will be introduced (as a result of current research) Hivers are going to be stratified into 3 categories:

A- those who are faring 'better', and are good candidates for 'cure trials' (see:
intensification trials)
B- the vast majority who are doing OK
C- those whose response to treatment is somewhat unsatisfactory, are in medical need, and are candidates for alternative or intensification trials

Looking at currently published trials I do not qualify for C-trials
(the Berlin patient was in group C...), but I do not qualify for A-group trials either
As an example I may not have qualified for the Sangamo BioSciences trial that identified a good responder, aka the Trenton patient.
http://www.aidsmeds.com/articles/HIV_Cure_Trenton_1667_21525.shtml
(then follow the link to the NYTimes article)

I have already been busted out of one trial because I applied too late (I was already 8 months into infection, 6 was the max)
And I can not enter one I am interested in because my application would be too early as 3 years of being UD (defined as <50) are required, and only one (small) blip allowed! (I only have a documented 11 months below 50, no blips)

I have already entered a personal 'tweaking' project and my next blood test (in 3 weeks) will let me know if it was worth the effort and if I should move on to the second project I have...

Thank-you notes and PMs.
*************************
I would like to thank those sending me Thank-you notes and PMs. They are always appreciated! It helps keep this thread focused.
It also helps me keep working on it

Farewell 2011
*************
How did you like 2011 ?
Somehow, I am looking forward to turning the page of 2011. 
I hope 2012 will be better (for every one!)
(I doubt I can make the same huge bonus, but, hey, I don't need it, anyway)

Stay tuned : 2012 will be a lot of fun!

Happy New Year ! ! !

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline J.R.E.

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #97 on: December 31, 2011, 08:12:28 AM »
Eric,..

Wishing you a Happy and Healthy New Year !! About 15 hours and 50 minutes till 2012, here ! It's champagne time again!  :P



All the best-----Ray  8)
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline cubwolf30

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #98 on: January 05, 2012, 12:04:38 AM »
Hi... first of all, best wishes in this 2012, and well, I want to say my thanks for this thread as I'm possibly beginning my treatment taking a regimen with Abacavir (in 2 days I'll get the results of the gene test), and reading your experience has put to rest some of my anxiety. Thanks again!
diagnosed at 19/03/2003 (from 12/2002)
Starting meds at 1/2012
cd4 7/03: 726
      4/04: 365
      4/05: 580
      4/06: 574
      5/07: 398
      7/07: 515
      6/08: 450 - VL:1700
      2/09: 455
      1/10: 510
      7/10: 439
     12/11: 317

Offline eric48

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Re: 06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)
« Reply #99 on: January 30, 2012, 04:53:58 PM »
Hi,

Here below are my latest results (Jan. 23 2012):
CD4 : 777 ; CD4 %: 30 ; CD8 %: 33 ; CD4/CD8 ratio 0.9
Everything else within optimal range (I forgot : VL < 20 ...)

Discussed (last) remaining issues with doc. Constipation gone, leg nerve pain gone, chest pain gone (actually somewhat back the last few days), still need a tiny bit of anxiolytic every day. All these onsets, then vanishing of 'symptoms' are quite puzzling. They do not seem specifics to the meds, which, he commented, are among the best tolerated otherwise (generally speaking). I believe he says so, because he is following up 'old timers' who seem in good shape with it on one hand, yet, I think he only has a handfull of patients on this 'unusual' combo ...
Discussed about joining a trial, but at this time, nothing of interest, that I would qualify for, is being done, here.

He manually checked my abdomen and lymph nodes. This time I was less tense than usual. Quite enjoying it. A bit disappointed when that exam was over. Wished it had lasted a bit more, I guess...I believe in progress and think there is room for improvement (LOL)

My ways of playing doctor are more fun than his ;-)

Cheers ! Eric
« Last Edit: January 30, 2012, 04:59:42 PM by eric48 »
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

 


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