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Autor Tema: Viral load not UD but staying at ~50 cells/mL; add another pill?  (Leído 3345 veces)

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Desconectado marseilliais

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Viral load not UD but staying at ~50 cells/mL; add another pill?
« en: Noviembre 20, 2017, 10:02:26 pm »
Hello everyone,

It's been about five months since my diagnosis, and I've been feeling very well and healthy. For the few who have read my "first diagnosed" post back then, you may know that I was lucky to have been put on Genvoya quickly after diagnosis and I reached undetectable after two months. However, in my recent viral load tests, it appears that my viral load went back up to 100, and as of now it is back down to 50. My HIV doctor is recommending that I add another pill to my Genvoya regiment, which is Darunavir (Prezista).

I personally feel that if my viral load plateaus at 50 cell/mL, I don't think that I would need to add another medication, despite not being undetectable. I'd rather avoid the possible side effects and hassle of carrying another drug bottle around, especially since my viral load seems to be staying low. I think my doctor may be slightly "jumping the gun" with adding another medication so quickly, but she may be suggesting so because she's concerned of a mutation? So here I am just asking for your opinions; do you think I should just remain on the one pill a day regimen, or should I take my doctor's advice and add Prezista?

Any and all comments will really help, thanks a lot!!
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

Desconectado den2542

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #1 en: Noviembre 20, 2017, 10:21:58 pm »
Hey. There was a post last night about a person who was taking his vitamins with Genvoya. Seems the magnesium and Calcium made the VL Go up and CD4 go down. He said to have a 4 hour wndow between Genvoya and any other pills even vitamins. Also do not take pills like tums but can't remember why. Someone help me out here...  also st Johns wort can do bad for results.

Desconectado marseilliais

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #2 en: Noviembre 20, 2017, 10:40:46 pm »
Hey den2542, thanks for your reply. Thankfully I don't take any other pills or antacids like Tums or St. John's wort, so I'm not too sure why else I'm seeing this blips. I am really adherent to my treatment. Maybe it went up because of the ending of Daylight Savings Time on Nov 5? I was an hour late than usual because I forgot that DST ended.
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

Desconectado den2542

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #3 en: Noviembre 20, 2017, 10:51:25 pm »
marseilliais so no other pills or vitamins? What about weight gaining supplements or ensure products? You know they sneek all sorts of stuff into those products. I use an app on my phone called MEDISAFE from Google Play store. Not only does it have a reminder for pill taking, but a refill reminder and an interactions portion and diary and appointments. Plus I set my alarm I take that pill at the same time every day. On some days when I wanna be a smart ass I'll kiss that pill and ask it to make me healthy. After a while this shit makes ya lose it....

Desconectado JimDublin

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #4 en: Noviembre 21, 2017, 11:04:21 am »
July you started right on treatment?

To be honest I think your results are great July to now and sometimes when you are newly on treatment you do blip, its common enough and does not mean there is a problem.

Now if you are doing everything right 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.

I included a link on blips, read it but don't read too much into it and keep in mind that you only clinically speaking had minor minor blips, during the first few months of treatment.  I would not be presuming issues or wondering about how I am taking the drugs or what I am taking it with just yet.

Perhaps you should at least go back and have conversation with the doctor and ask why they are concerned considering you just started treatment and seen if holding off with a few more months to see how the trend pans out is something they might consider.

Whatever you do wishing you all the best

Jim

Read this but don't panic - we all will or have had blip's without problems.
https://www.poz.com/article/viral-blips-raise-risk-hiv-treatment-failure

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
Citar
When HIV drug therapy is started—preferably with a powerful combination of drugs—the level of HIV should start to drop dramatically. This is where viral load testing comes in. During the first two months of therapy, an HIV-infected person’s viral load should drop a minimum of 90 percent. In other words, someone who starts treatment with a viral load count of 100,000 should drop to 10,000 or less within two months. Within 4 to 6 months of starting therapy, the viral load should have dropped a lot more

https://prod.poz.com/basics/hiv-basics/hiv-drug-resistance

« última modificación: Noviembre 21, 2017, 11:06:30 am por JimDublin »
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Desconectado marseilliais

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #5 en: Diciembre 02, 2017, 09:48:42 pm »
Thanks Jim! Encouraging as always. You're right, I should probably speak to my doctor about her advice more. I'm seeing her in about a week so hopefully I can talk it out with her. Hopefully it's all ok; I'd really prefer not to add another drug to my regimen. Besides, I think some people take much longer to get to UD anyway
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

Desconectado marseilliais

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #6 en: Diciembre 08, 2017, 03:35:34 pm »
So I just got back from my doctor, and she was really concerned and quite insistent on giving me a two drug regimen to replace my Genvoya. She was almost confident that Genvoya was not working because I was not virally suppressed, and I should have been undetectable after two months of taking it. She said that there was no other one-pill regiment she can offer me, but then I asked about Triumeq, and she said we can try Triumeq. So now I'm back to day 1 on Triumeq, and my doctor said that if I'm not undetectable by January, then somethings gotta change. I can definitely feel the pressue.
« última modificación: Diciembre 08, 2017, 03:38:38 pm por marseilliais »
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

Desconectado JimDublin

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #7 en: Diciembre 08, 2017, 03:45:40 pm »
Is she new or Irish ? She sounds a bit like my first HIV doc that i fired from my care  ;D

Anyhow good luck with the Triumeq, glad you raised the options with her and i am sure things will be just fine. Don't let her fears become yours and enjoy the holidays.

Jim
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Desconectado LeftyBowler300

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #8 en: Diciembre 09, 2017, 12:23:08 am »
I had this same problem with Genvoya. VL Went down to 53, then back up to 130, then down to 100, then FINALLY <20 7 months later. I was taking a multivitamin with it, and I think that was causing lower levels of Elvitegravir (the boosted II).
I moved my multivitamin to 4+ hours before Genvoya, and started taking Genvoya by itself with LOTS of food. Sure enough, that worked.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh... wtf
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Challenge Accepted.

Desconectado CaveyUK

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #9 en: Diciembre 09, 2017, 02:57:00 pm »
Your doctor is being extremely rash and way too impatient.

VL can take some months for some people to get to UD, and can plateau a bit first.

As your VL, even the blip, were under the 200 mark which was UD not that long ago, I would prefer doctors to take a bit more of a wait and see approach. I'd also expect them to look into other factors that could be contributing, including other medication, supplements and (for Genvoya) whether the food you need to take with it is sufficient.

On the other hand, Triumeq is another fine choice and personally I would prefer it to Genvoya anyway due to the lack of food requirements, low side-effect profile and far fewer interactions with other drugs. I'm on Tivicay/Truvada which has the same Dolutegravir component to Triumeq and other than having to take two pills instead of one (which isn't REALLY a hassle), it's great.

So yes, the doc was too impatient but try to relax. Your new combo is also a good one - you haven't been downgraded!

What I will recommend is to resist any further impatience this time around. January is WAY too early to suggest further changes if not UD and in the absence of a upwardly trending VL count. I'd make that absolutely clear to her. The one thing you don't need to be feeling during all this is completely unnecessary 'pressure'.
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Desconectado marseilliais

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #10 en: Diciembre 15, 2017, 10:57:38 am »
@JimDublin Haha! She's been in the HIV field for a really long time actually. Unfortunately I don't have the luxury of picking and choosing a specialist where I live  :P. But thank you for the reassurance!

@LeftyBowler300 Yeah, I quickly realized that Genvoya was a bit difficult to manage because I had to make sure I ate before I took it. I'm somewhat happy that I got switched to Triumeq because at least I don't need to eat food every time.

@CaveyUK Thank you, I'm not the only one who thinks she's being impatient! So far, I am also liking Triumeq because of the lack of food requirements. I'm noticing a little bit of fatigue and slight headaches, but it seems to be going away. I just got my labs back and as of Dec. 5, just before switching to Triumeq, my VL is still 55 (on Nov. 20, when I made my first post, it was 50). I'm happy that my VL is remaining constant, and hopefully it will be UD with Triumeq in another 30 days. Thank you for your advice, I'll try to be more resistant to her impatience the next time around. I know she does have my best interest in mind. I just don't want to test her patience and have her care less about me as a result; she can be a really tough lady lol.

I really appreciate all your comments! I hope you guys are having a good holiday so far!
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

Desconectado marseilliais

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #11 en: Enero 29, 2018, 11:52:49 am »
Morning everyone,

Sadly, my labs just got back from Jan. 20 and my VL is 77 even after about a month of Triumeq. I'm quite beat-down because I've adhere really well, but I guess the virus out-smarts us all. After some time thinking I think I'll take my doctor's suggestion to add another pill. I want to see if I can achieve UD--or if I'm one of those rare people who just can't achieve UD for unknown reasons. Also, I really don't want to develop mutations further down my life. I'm thinking of asking for Tivicay to boost the Dolutegravir portion of Triumeq, or maybe just Prezista. What do you guys think?

PS: All of you have been incredibly helpful since my diagnosis, so thank you all so, so much.
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #12 en: Enero 30, 2018, 11:35:25 am »
Actually I think your results are very good.   You started with a very high VL.  You have had excellent response.

I wouldn't worry much unless VL goes above 200 on two separate tests a month apart.

50. 55. 77 is not significantly different.   (I read that they look for change of 0.5 log)

So scientifically you started with a VL at log 6.47 it declined to log 1.74 and his risen to log 1.88.

So overall you have had  reduction of log 4.73 and your blip is log 0.14.   So not significant.

I consider the UD measure as an outlier.  Most of your tests have been consistent with VL around 50. (Two in a row vs only the lowest score.)   You started with a high vl.

For an increase of log 0.50 from 55 that would be three fold or to 165.

log 165 is 2.22.
So VL above 165 would be a three fold increase.

So relax, dont worry. As long as it stays in this low range. Hope thats not too much math.  Good luck.

Desconectado marseilliais

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #13 en: Enero 30, 2018, 11:56:31 am »
Hey ExPat thanks for the response. Your maths make sense--it doesn't seem too worrisome. I guess my doctor's concern is that normally Triumeq or Genvoya brings ppl down to UD within a month or two. We'll see how Prezcobix works for me-- fingers crossed.
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

Desconectado CaveyUK

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #14 en: Enero 30, 2018, 06:51:45 pm »
It can be hard being patient when it comes to VL, but I really wouldn't personally be swapping in and out drugs too quickly if I was keeping the VL <100.

If things keep going the same way, maybe see if they can run any tests to check for any absorption issues that may be preventing the correct level of drug being maintained. That would be a question for your doctor of course.

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #15 en: Abril 12, 2018, 12:11:25 pm »
Just wanted to give an update to anyone who's following this thread: So I ended up picking up my Prezcobix, but I refused to take it and I decided to wait two more months on just Triumeq. And I'm so glad I did because I finally hit UD—without the help of the extra pill. It took me 10 months, but I'm here now  ;D
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #16 en: Abril 12, 2018, 12:39:51 pm »
Excellent update, congrats on the results.
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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #17 en: Abril 16, 2018, 12:49:22 am »
Thanks Jim!
Jun. 09/17 - diagnosed, CD4: ?, VL: ?
Jul. 20/17 - CD4: 450, VL: 3,000,000
Started Genvoya
Aug. 20/17 - CD4: 700, VL: UD
Sep. 25/17 - CD4: ?, VL: 157
Oct. 26/17 - CD4: 724, VL: 53
Dec. 10/17 - CD4: 640, VL: 55
Started Triumeq, discontinued Genvoya
Jan. 20/18 - CD4: ?, VL: 77
Apr. 3/18 - CD4: ?, VL: UD

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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #18 en: Abril 16, 2018, 07:46:03 pm »
Great news. I thought that would be the case, so it's nice to get the update to keep up to speed!
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Re: Viral load not UD but staying at ~50 cells/mL; add another pill?
« Respuesta #19 en: Mayo 03, 2018, 06:17:05 pm »
Glad it worked out OK.  I thought it would.  Cheers.

 


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