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Author Topic: Genvoya, Triumeq, Darunavir  (Read 1519 times)

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Offline Marcanthony

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Genvoya, Triumeq, Darunavir
« on: January 08, 2019, 03:01:55 pm »
Hello all.

This is my first time posting so please bare with me!

I was newly diagnosed in August this year- I was very ill presenting PCP, CMW & bacteria infections. My CD4 was 6 viral load was 151192

I was orginally put on to 2 tablets a day twice a day (cannot remember what they were called but one was pink & the other blue). My Dr then changed me to Genvoya. It seemed to be working well, as the viral load started to drop, first to 330, then 136 (CD4 of 27) but it shot back up to 1640, then 940, then 600 (CD4 of 72). I was given darunavir to help boost, but Ive had awful itching and a rash from it so the Dr has told me to stop taking the darunavir and just take the Genvoya- he said we should have "held our nerve" and not put me on a PI.

They seem to think that the itching & skin is due to IRIS- although, Im not convinced, but hey, I'm not the expert.

They were talking today to move me to Triumeq once these lab results come back if there hasnt been any improvement in my viral load and CD4 count. Im also taking dapsone at the moment to help prevent the PCP

Im just so worried about all of this as although the viral load is moving its up and down plus the CD doesn't seem to be moving as quickly as others I read about.

Has anyone else experienced this? If so, what were your outcomes. How do you find the triumeq? Im just praying that although the PIs have been stopped, its helped with the virus. I had no resistance and was infected as "wild type"

Any help, guidance or your experiences would help me a lot.

Many thanks

Offline Jim Allen

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Re: Genvoya, Triumeq, Darunavir
« Reply #1 on: January 08, 2019, 03:59:37 pm »
Hiya

Welcome to the forum, sorry to hear about the diagnosis and the itching. 
I hope that has/is settling.

Quote
They seem to think that the itching & skin is due to IRIS- although, Im not convinced, but hey, I'm not the expert.

Could be, could also be other skin/fungal infections pretty common, or the dapsone? Thankfully if it was from the PI that was added than it would also go again after stopping.

As for the CD4 count as you mentioned it a few times, to be honest it takes as long as it takes to recover and is not the overall focus.

Quote
he said we should have "held our nerve" .

When did you start the Genvoya?

Look if you are doing everything right, taking the meds correctly and consistently with food as Genvoya requires food intake and you continue to have Micro Blips as forum members call it than sometimes doctors will add or switch treatment to "fully" suppress the blips.

That said the idea is to reduce the viral load by 90% or so in the first 2-3 months and it can take up to 6+ months to be fully UD and in the first year or treatment  "blipping" anecdotally speaking seems to be more common.

Example:

https://forums.poz.com/index.php?topic=65891.msg
https://forums.poz.com/index.php?topic=68120.0

See what the next results are like and try not to stress about in the meantime.
As for the Triumeq I pop it like candy however its not for everyone.

Take it easy

Jim

PS I moved your thread here as you are new and its your first post, this way you have an introduction thread.

 

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Offline Marcanthony

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Re: Genvoya, Triumeq, Darunavir
« Reply #2 on: January 08, 2019, 04:31:14 pm »
Thanks Jim.

I started the Genvoya in September and the blip was November.

Offline Jim Allen

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Re: Genvoya, Triumeq, Darunavir
« Reply #3 on: January 08, 2019, 04:34:06 pm »
So just within a few weeks of switching to Genvoya
I really would not overthink it at this stage

Jim
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Offline virgo313

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Re: Genvoya, Triumeq, Darunavir
« Reply #4 on: January 08, 2019, 06:34:57 pm »
Hi There,

I took additional antibiotic (Bactrim) due to my low CD4. This in experience causes me itching. as soon as i don't have to continue Bactrim, the itching is gone.

Just wondering if you are taking any antibiotic together with ART? Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline Marcanthony

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Re: Genvoya, Triumeq, Darunavir
« Reply #5 on: January 09, 2019, 12:38:48 pm »
Hello. Yes I have been taking dapsone since being diagnosed.

Offline Jim Allen

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Re: Genvoya, Triumeq, Darunavir
« Reply #6 on: January 10, 2019, 05:12:36 pm »
When is your next appointment/labs BTW?

Also how are you doing now with the PCP, CMW & bacteria infections?

Jim
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Offline Marcanthony

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Re: Genvoya, Triumeq, Darunavir
« Reply #7 on: January 11, 2019, 11:52:23 am »
Hi Jim. Had appointment on Tuesday this week. The Dr told me to stop with the PI, didnít have blood results. They drew blood this time for CD4 and viral load, plus liver, kidney functions. Also rerunning syphlus test, not sure why as itís been negative twice but leave the experts to it. (And not bad sex since being diagnosed!)

PCP has cleared, oxygen levels at 99. CMV now clear bacteria finally cleared (it was gardia) and was very stubborn to clear. Iím just taking dapsone now to prevent.

Dr is keeping me on Genvoya for time being, just hoping Iím UD next tine as I was so close 2 months ago (viral 136) but it went back up to 1640.

Offline lightalltheway

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Re: Genvoya, Triumeq, Darunavir
« Reply #8 on: January 11, 2019, 05:37:16 pm »
Marcanthony,


I am glad that you feel good overall, with reference to your question regarding Triumeq, it is a good one dose medication that requires no food intake. It works best with some people and for others not really well, so we cant generalise any treatment as our body response vary among us.

On a personal reflection, I am doing ok with it and it is easy to take without food makes life easier. Nonetheless, first couple of weeks were difficult, headache and insomnia, now it am perfectly fine. But be aware that before taking this medication you will need to make an HLA typing test to determine your sensitivity and the avoidance of any reactions.


Finally, do not stress on your CD4 count, what is more important is the VL. Although the first is an indication of the immunity system, but it is not an indicator on how well it is. Thats why many health care providers stress more on the latter now because as long as you are virally supressed, your immunity system will eventually recover.

Light all the way,
Prince

Offline Marcanthony

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Re: Genvoya, Triumeq, Darunavir
« Reply #9 on: January 11, 2019, 06:02:41 pm »
Thank you. Yes, I agree.hopefully when I get the virus is surpressed. Knowing my luck Iíll be one of those that they cannot get it fully surpressed

Offline Marcanthony

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Stopping PIs...
« Reply #10 on: January 22, 2019, 10:55:40 am »
1 month after being diagnosed my VL was 134 i had been prescribed pink and blue which I was taking 2 twice a day.

Switched to Genvoya By my Dr. and seen an increase in VL- which says to me Genvoya alone is not controlling the virus.

I was prescribed a PI. This gave me a rash so dr. Asked me to stop taking it. I gave blood for labs 5 weeks into taking PI and waiting for the results.

Has anyone had any experience of stopping PIs and allowing their other medication to control the virus correctly? Itís something I want to discuss with my Dr. But also have some back up support to present to them.

Any advice would be great

Offline Expat1

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Re: Genvoya, Triumeq, Darunavir
« Reply #11 on: January 22, 2019, 04:00:37 pm »
It seems to me your doctor is on top of this.  Look you were very sick.  Now you are getting better.  You have seen your viral load drop from 150000 to about 1500, so the medicine killed 2log  of virus or 99.9%. Now the doctors are figuring out what to do about the 0.1 percent left that is blipping up and down. 

They are concerned, and taking steps.  You should relax, know that you are being treated by professionals and concentrate on diet.  Maybe take up yoga, or a mild fitness program (Like taking a walk everyday, or bowling, etc.)   Enjoy life.

I did have a lot of itching about a month into my treatment, It happened at the same time my liver enzymes were elevated.  It went away when my liver enzymes dropped back to normal.  The Dr.  just monitored me real closely for about 6 weeks.  With blood tests every 10 days or so.

It gets better....

As you pointed out the PCP is gone, the the CMV under control, the gardia gone, the viral load down, the CD4 count up.

Offline Marcanthony

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Re: Genvoya, Triumeq, Darunavir
« Reply #12 on: February 05, 2019, 05:55:43 am »
Hey everyone. Hope everyone is good & thanks for the messages

So been to drs today. They still cannot control the virus albeit at low levelsz

Labs today were
VL: 236
CD4 94

So good increase in CD again and decrease in VL. But they are now switching me to Truvada and Dolutegravir. Any advice for these medications from your own personal
Use?

Offline Jim Allen

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Re: Genvoya, Triumeq, Darunavir
« Reply #13 on: February 06, 2019, 12:54:53 pm »
Solid combination.

Anecdotally speaking taking Tivicay on an empty stomach and morning dosing routine has some evidence to reduce/cut out sleep issues (That's if you even experience that)

Personally I've been on combo's containing dolutegravir since 2014, its a drug that suits me just fine

Jim

Sleep issues and morning dose
https://www.poz.com/article/morning-dosing-tivicay-may-ease-insomnia-side-effect
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Offline Marcanthony

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Re: Genvoya, Triumeq, Darunavir
« Reply #14 on: February 08, 2019, 02:35:26 am »
Thanks a lot Jim. Fingers crossed

Offline Jim Allen

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Re: Genvoya, Triumeq, Darunavir
« Reply #15 on: February 12, 2019, 02:49:43 pm »
You're welcome, and relax you will be grand  ;)

Keep us posted.
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
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Read about PEP and PrEP here
PEP and PrEP

 


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