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Author Topic: About to start Complera  (Read 4485 times)

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Offline caguy1988

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  • Posts: 3
About to start Complera
« on: June 24, 2014, 11:47:23 pm »
I was diagnosed last month and my doctor expressed hesitation regarding starting treatment because my numbers are within the normal range. I told him I felt like a ticking time bomb and wanted to start. Long story short, I received my first bottle of Complera yesterday but couldn't bring myself to take my first pill. I think I want to wait until the weekend, away from work and other obligations, when I have a chance to experience and deal with any possible side effects.

I don't see much talk about Complera on here and I'm curious to see what side effects people have experienced. I know it's only been on the market for a few years, but I'd appreciate any insight.
5/18/14 Diagnosed
5/20/14 First labs: VL 1570, CD4 608

Offline Jmarksto

  • Member
  • Posts: 667
Re: About to start Complera
« Reply #1 on: June 25, 2014, 01:30:31 am »
caguy;  Welcome to the forums.

I am on Complera, as are a number of other folks here and there have been a few threads on the topic. If you do a search you will find the various threads on the topic (if you haven't already).  The side effects were negligible to none for me, which is the case for the vast majority of folks.  You should do just fine.

I wish you well,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45% VL 25
02/25/14 CD4   792/37% VL UD
07/09/14 CD4 1004/39% VL UD
11/03/14 CD4   711/34% VL UD
03/13/15 CD4   833/36% VL UD
04/??/15 Truvada & Tivicay
06/01/15 CD4 1100/50% VL UD
10/16/15 CD4   826/43% VL UD
??/??/2017 Descov & Tivicay
2017 VL UD, CD4 stable around 850
2018 VL UD, CD4 stable around 850

Offline initforlife

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  • Posts: 832
Re: About to start Complera
« Reply #2 on: June 25, 2014, 01:55:19 am »
Hi caguy, I am also on complera started 4/25/14 no real side effects here I still get dizzy at times. but I started two other new meds the same day so we are still working to see which one is the one if any is causing the dizziness . My numbers were good when I started also v/l 7000 cd850 but I had other isssues so my Dr wanted me to start treatment right away after 30 day my v/l was 63 and cd4 975 I find taking this pill first thing in morning works for me.  Good luck.  At this point that pill is more of a mind thing and a reminder to  you every day you got this!  and you are fixing to kick this virus's  ass !
sometimes it is best to say nothing at all. then to offend

Offline gadawg1979

  • Member
  • Posts: 142
Re: About to start Complera
« Reply #3 on: June 28, 2014, 01:50:05 am »
It kicks HIV ass I have issues sometimes with sleep, and hot flashes other than that it seems fine and forgiving on the timing... I take mine with dinner when ever dinner is...
Diagnosed March 2012
Initial CD4- 156 VL 200K (started Complera) Genotype test no resistance
First labs on meds CD4- 246 VL 2K Taken after 30 days on Complera
90 Day labs VL 306 No CD4 Drawn
8/21/2012 CD4 474 VL Undetectable (40) %20.6
11/27/2012 CD 4 522 VL Undetectable (40)
2/14/2013 CD 4 464 VL Undetecable (30) 19.6%
6/8/3013 CD 4 528 VL Undetectable (30)
9/24/2013 CD 4 546 VL Undetectable (40)
1/30/2014 CD4 560 VL Undetectable (40) 22 %
6/19/2014 CD4 584 Vl Undetecable (30)

Offline eric48

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  • Member
  • Posts: 1,361
Re: About to start Complera
« Reply #4 on: June 29, 2014, 05:22:02 am »
I don't see much talk about Complera on here

1 - Complera is relatively new
2 - If patients have no complaints, they do not post

Complera is usually well tolerated (of course... not 100% of patients...) Complera is Rilpivirine + Truvada

Complera users will thus be eligible to one of the following simplification once they are validated:
A - 4d/week (complera is a listed, acceptable combo for yet-to-start trial
ClinicalTrials.gov identifier: NCT02157311
OR
B - Rilpivirine + Dolutegravir (a 2 meds combo under developement)
http://forums.poz.com/index.php?topic=54403.0

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline eric48

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  • Posts: 1,361
Re: About to start Complera
« Reply #5 on: June 29, 2014, 05:40:14 am »
I told him I felt like a ticking time bomb and wanted to start.

I understand the feeling... been there done that... But your fears are not well placed

With a VL of 1500:
Any of the following strategies is equally valid (until proven otherwise):
1 - start meds
2 - not start med
3 - start meds , reassess and stop if you have second thoughts

With a VL of 1500:
A - Hivers do not infect others in daily life
B - Hivers who are UD do not infect their partner (condomless sex). This is known for many years , since the so called 'Swiss Statement'. What is little less known (obviously) is that this applies to Hivers not under meds with very low VL (say below 2000). This is less known, but, I think I read it in one Pr Hirschel presentations, so you may want to contact him to confirm. The group of people on which this observation was made is very small, obviously...

With a VL of 1500 and CD4 600:
- odds of having a opportunist infections is virtually zero
- odds of non OI complications  is virtually zero
- odds of being in need for treatment within 5 y. extremelly small (yet, not zero)

So...

ticking time bomb ???

Really ?

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline caguy1988

  • Member
  • Posts: 3
Re: About to start Complera
« Reply #6 on: July 01, 2014, 11:15:48 pm »

Really ?


Really. If you say you've been there and done that, then you shouldn't have to question how I feel. I understand that I am at low risk for infecting others and getting sick, but I also want to protect myself.

I started Complera last week and so far I don't notice any differences in daily life. I hope this becomes the norm and I can move on.
5/18/14 Diagnosed
5/20/14 First labs: VL 1570, CD4 608

Offline sfguys

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  • Posts: 28
Re: About to start Complera
« Reply #7 on: July 02, 2014, 01:15:51 pm »
I started on Complera one and half month ago. My VL was close to yours. It was 1670. The VL was low, compared to others. But I know the virus was doing something to my body. I was losing weight. It is a good thing, but not for a good reason. Ever since I took medicine, I stopped losing weight.


Really. If you say you've been there and done that, then you shouldn't have to question how I feel. I understand that I am at low risk for infecting others and getting sick, but I also want to protect myself.

I started Complera last week and so far I don't notice any differences in daily life. I hope this becomes the norm and I can move on.

Offline le_liseur

  • Member
  • Posts: 134
Re: About to start Complera
« Reply #8 on: July 02, 2014, 02:55:18 pm »
I started Complera exactly a year ago, while I didn't "need" to do right away.

My VL was around 15,000 and CD4 around 900 (I frankly don't remember the details... at one point, when things just go well, it's probably best to not focus on little fluctuation in VL and CD4...) I was undetectable at my checkup in the Fall, so it wasn't long before it happened. And I'm still undetectable. My CD4 has been the same, last time, they were around 1,100.

No side-effects, no complications, no stress about it. I think the major point is to make sure you can afford the pills every month if you're not in a situation when you need to start right away. :)

Offline eric48

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  • Posts: 1,361
Re: About to start Complera
« Reply #9 on: July 02, 2014, 07:51:36 pm »
Some newly diagnosed people posting on this forum are expressing feelings about themselves, like feeling like 'damaged good' or this rather less common 'ticking time bomb'

I don't second guess the feeling. The feeling is there and it is there.

Initiating treatment is not only good for one's health, it is also good for one's psychological state and that is a good thing.

Quite unfortunately, while the internet is for everyone to read, not everyone can afford to start treatment as they would see fit. In many countries they have rules and guidelines that would prevent a patient, especially a patient with high CD4 count, to initiate treatment

As of today, for a large majority of people early treatment is not an option...

For those who read this Forum and do not have access to early treatment, the 'damaged good' feeling (or any other negative feeling) about themselves can not be put behind them with a daily pill that they do not have.
But, they will have it eventually (hopefully)
And when they have it, everything gets better, not only their health, but their mental health

In the interim, they need to put things in perspective. The feeling of being a 'damaged good' or a 'ticking time bomb' or whatever negative representation of self is there and there for real, we can not do but acknowledge the feeling.

But the reality is that there is no such thing as 'damaged good' nor 'ticking time bomb' for real. That representation of self was common in the past and there well enough movies and books to remind us. But is it still a proper representation of self in the 10' ?

A poz person, who is aware of the serostatus and is linked to care is actually much less of a time bomb than a untested poz person.

Now, I appreciate that the feeling is there and happy that early treatment was not denied to me (although at the time it was not common practice) nor to our US/EU readers.

For the benefit of those (poz) readers who do not have access to early treatment I have just put things in perspective: there are no damaged goods and no time bomb. There is a virus which is highly treatable

It is fortunate that more and more people will have access to easier drugs and have access when they feel a need for it.

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

 


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