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Author Topic: Should I start treatment?  (Read 6610 times)

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Offline sydneyboi

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  • Posts: 4
Should I start treatment?
« on: August 22, 2012, 03:59:04 am »
Hi,

I was diagnosed in late July 2012 as HIV+, it's been a challenging few weeks to say the least. The guilt, shame, depression, anger, blame and denial have all helped me get to "acceptance" of what is actually happening. While I am still trying to get my head around this new diagnosis, my doctors and other health care professionals have suggested that I get right on with treatment.

The doctor has suggested "Eviplera" as an option for me to consider. Does anyone have any advice/experience regarding this treatment option. What are the induction side effect like?

Also, is it considered "best practice" to start people on treatment so soon after being diagnosed? What are the benefits? What is a good time to start treatment?

Oh, I have so many question and I am struggling to make the decision to start treatment. Perhaps I am still very overwhelmed with the unexpected news of being positive.

Your advice and opinions will be appreciated. So thanks in advance!

Offline PerfectlyHuman

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  • Posts: 23
Re: Should I start treatment?
« Reply #1 on: August 22, 2012, 05:40:52 am »
I just got tested positive like 2 months ago and have viral load of 4000. Will be seeing my doctor at the end of the month. I will say jump on it asap. If you have the insurance and finances then don't wait. From what I know the sooner you start the better chance you have fighting the virus and avoiding needless opportunistic infections and other long term side-effects like lypos. The newer drugs are less toxic and more tolerable. Have you heard about the Visconti Cohorts?

There was a phase 2 study on a vaccine designed to keep the viral load down for a long or indefinite time without being on everyday meds so I am thinking that after the phase 3 study and if its approved someone who has been on treatment with UD viral load can benefit from it.

Offline buginme2

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Re: Should I start treatment?
« Reply #2 on: August 22, 2012, 06:26:14 am »
Treatment is usually recommended now for everyone (in the US, different places have different guidelines).  If there is a good reason to delay you can.

The Eviplera you are considering is a new medication (listed as Complera in the US) and should have little/no side effects. 

Don't be fancy, just get dancey

Offline spacebarsux

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Re: Should I start treatment?
« Reply #3 on: August 22, 2012, 08:38:45 am »


Also, is it considered "best practice" to start people on treatment so soon after being diagnosed? What are the benefits? What is a good time to start treatment?

Oh, I have so many question and I am struggling to make the decision to start treatment. Perhaps I am still very overwhelmed with the unexpected news of being positive.

Your advice and opinions will be appreciated. So thanks in advance!

What is your CD4 and Viral Load, Sydneyboi?

In the U.S. they recommend treatment for everyone, but it is noteworthy that the recommendation is 'moderate' (and is based on expert opinion, not evidence) for people whose CD4>500.

In Europe and many Asian countries treatment is usually recommended when CD4 drops to 350. There is evidence  from clinical trials that waiting longer than this can make recovery of CD4s difficult and slow.

Also, the START clinical study global trials are currently underway to precisely ascertain  whether there is a net long-term benefit in commencing therapy with CD4>500 rather than waiting until they fall to 350 or so.

So talk it over with your doctors, see how you feel about it (mentally and physically), do your research if you wish, and then take a call.

Best
« Last Edit: August 22, 2012, 08:40:57 am by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Peaceful_Rhino

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  • Posts: 12
Re: Should I start treatment?
« Reply #4 on: August 22, 2012, 09:59:09 am »
Hey Sydneyboi-

Sorry for the news but welcome.  I too was diagnosed in July 2012 and experienced much of the same emotional journey as you on that road to "acceptance"  These forums (and its members) were a huge help  :)

While my levels were at a point where I should start meds (cd4 410, VL 26,700) my IDS and I decided to hold off for the release of Gilead's Quad pill.  Not sure if it will be available in your area (assume Oz).  The main reason for the wait was numbers were not horrible and I really wanted a once a day dosing.  Atripla was out due to resistance and Complera posed concerns with meal composition.

So as to your decision when to start and on what (both of which are VERY personal)...factor current cd4/vl levels, lifestyle (is once a day best or can you stick to 2x, etc) and financial.

Most importantly, I have found that when I get stressed about my diagnosis, treatment, tests, etc...all of which have been stressful, I find that meditation/focused breathing helps me to calm down and helps bring me to the answers that fit my needs.

So my advice, breathe deep, focus and relax...you will be fine!

Blessings,

PR
4/1/13 - CD4-828/34%, VL=UD...BAM!
12/31/12 - CD4-579/27%, VL=UD
10/26/12 - CD4-497/22%, VL=UD
9/9/12 - Started Truvada/Isentress
7/24/12 - CD4-410/13%, VL 26,700
7/2/12 - Tested POZ




"Success is how high you bounce when you hit rock bottom."

-George Patton

Offline sydneyboi

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  • Posts: 4
Re: Should I start treatment?
« Reply #5 on: August 22, 2012, 10:47:02 am »
Thanks to all that have responded.....food for thought!
It is rather comforting to have this forum, all of a sudden I don't feel so alone. Well today anyway!

Offline Jmarksto

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  • Posts: 667
Re: Should I start treatment?
« Reply #6 on: August 22, 2012, 11:26:50 am »
Sydenyboi:  Sorry for your diagnosis and welcome to the forums. 

I was diagnosed in June and really understand the emotional reaction of guilt, shame, depression, etc.  While it is getting much better for me I am still adjusting.  I think allot of us go through that process one way or another -- it is getting much better for me in a pretty short period of time.

With regard to when to start meds -- my situation was (is) that my numbers were very good and my doctor wanted to wait until I adjusted more emotionally.  His comment was that he likes to wait a while (six months ish?) if the numbers allow it for the person to adjust mentally.  His comments were that he thinks there is better adherence to the daily regime.  However, I pushed to start sooner rather than later for a few key reasons.  I want to reduce the chance of transmitting to my partner, reduce some of the symptoms I am having, and the current literature points to starting as soon as possible.  I am also seeing a counselor who has a bias to starting treatment sooner.  So - I started Complera two days ago - so far so good. I can not comment on Eviplera, but I recommend doing a search in the forums for it to see what has been posted in the past.

Back to the emotional side -- I will tell you that getting the prescription from my doc, even though I pushed for it, was full of emotions; the day I went to the pharmacy to pick up the meds I cried; I have only been on meds three days and each day is a little emotional.  But I know this is still the grieving process and I am doing the right thing.  I will say - my emotional state has gotten much, much better over the last few months in a big part to the advice and support from these forums -- things are getting better for me and I am sure they will for you too.

The decision on when to start is a very personal one, I think you will get more specific advice from those that have more experience if you provide your numbers (CD4 and VL) as spacebarsux noted.

Again, welcome, and 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 Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Should I start treatment?
« Reply #7 on: August 22, 2012, 11:50:15 am »

  So - I started Complera two days ago - so far so good. I can not comment on Eviplera,


If you're taking Complera, you're taking eviplera. Complera consists of four meds - eviplera, rilpivirine + tenofovir + emtricitabine.
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jmarksto

  • Member
  • Posts: 667
Re: Should I start treatment?
« Reply #8 on: August 22, 2012, 12:24:55 pm »
Ann;

My understanding is that Complera has three meds; EMTRIVA® (emtricitabine), EDURANT® (rilpivirine), and VIREAD® (tenofovir disoproxil fumarate), from:

www.complera.com/antiretroviral-medicine/

It may be a difference in naming conventions...?

Thanks,
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 Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Should I start treatment?
« Reply #9 on: August 22, 2012, 03:17:46 pm »
Yes, sorry for the confusion. I was rushing when I posted earlier and thinking about something else at the same time and got a bit garbled - got the first sentence out correctly then went off the rails a bit.

What I meant to say was that you're already taking Eviplera - it's another brand name for Complera.

It does my head in sometimes; not only do we have at least one (and sometimes more) generic name per drug, we also have at least one (and sometimes more) brand name for drugs. Brand names are always written beginning with an upper-case letter, generic with a lower-case letter unless you start a sentence with it.
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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