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Author Topic: Alternating Days - Biktarvy Med - Not Taking Meds Every Day  (Read 2009 times)

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Offline jcelvis

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Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« on: March 31, 2020, 02:59:46 pm »
Just got off the phone with my Dr, about the side effects of Biktarvy (weight gain/fat distribution in the lower abdomen region) . I've been undetectable for 10 years now.

My Dr says the Biktarvy drug is so powerful, that it's safe for me to not take the drug everyday. He says I can start taking the drug 1 day on/ 1 day off (alternating days, such as taking it every odd day).

Is anyone doing this?

I have been adherent for 10 years, but the weight gain in the stomach area is causing me undo stress.
Change the way you view the world, and the world around you changes.

Offline Grasshopper

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #1 on: March 31, 2020, 03:15:59 pm »
Sounds odd ???

https://www.biktarvy.com/taking-biktarvy

What should I do if I run out of medicine?
When your BIKTARVY supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped even for a short time. The virus may develop resistance to BIKTARVY and become harder to treat./b]

Offline leatherman

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #2 on: March 31, 2020, 03:27:35 pm »
the side effects of Biktarvy (weight gain/fat distribution in the lower abdomen region) . I've been undetectable for 10 years now.
halfway taking an antiretroviral is a terrible way to compensate for side effects.

so some questions to consider:
how long have you been taking Biktarvy?
when did you start having this side effect?
Why did you change to this regimen?
Was your previous regimen working for you?
what other regimen has your doctor suggested that might not have this side effect?
leatherman (aka mIkIE)

Offline Jim Allen

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #3 on: March 31, 2020, 04:00:19 pm »
Guinea pig, interesting.

I don't know of any real world studies to back up the doctors claims on Biktarvy. Last and most recent attempt with modern ART and non daily treatment came with mixed results and a heatlh warning.

Anyhow, best of luck whatever you decide to do.

i-Base report urges caution over French study only taking ART 4 days a week
@IAS_conference  see: link: http://i-base.info/htb/36517
« Last Edit: March 31, 2020, 04:21:55 pm by Jim Allen »
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Offline J.R.E.

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #4 on: March 31, 2020, 06:20:52 pm »

My Dr says the Biktarvy drug is so powerful, that it's safe for me to not take the drug everyday. He says I can start taking the drug 1 day on/ 1 day off (alternating days, such as taking it every odd day).

Is anyone doing this?



Short answer--Not me

I think your Doctor is wrong in suggesting this to you. We all know what the insert says: "One pill per day,  with or without food". 

It doesn't say anything about every other day.

Now ,  I can understand what you are saying about the weight gain. I had exactly the same issues, with Biktarvy, when I was on it.  And the weight gain came on quickly over a short period of time.

I switched back to Viramune and Epzicom on January 20th, 20. So its been about 2 months and 10 days or so.  I have dropped 6 pounds all in the mid section, since dropping Biktarvy. I feel a hell of a lot better about myself with the weight loss.  And I'm sure it's healthier all the way around.


Ray
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

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 July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline Matths

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #5 on: March 31, 2020, 07:04:10 pm »
Hi there, I can only second what the others here said: there are no data supporting an approach to take ART only every other day in order to prevent side effects including weight gain. In fact, you state you have good adherence and I assume this results in being undetectable for an extended period of time. I personally would never risk this accomplishment. Instead, I would do a careful analysis of treatment history and select a treatment that keeps the U status and doesnít increase the risk for metabolic changes including weight gain. And there are dietary and life style changes that you could consider before risking to set you up for going through treatment failure. I would revisit this topic with your doctor. Good luck! Matt

Offline jcelvis

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #6 on: March 31, 2020, 07:24:02 pm »
Guinea pig, interesting.

I don't know of any real world studies to back up the doctors claims on Biktarvy. Last and most recent attempt with modern ART and non daily treatment came with mixed results and a heatlh warning.

Anyhow, best of luck whatever you decide to do.

i-Base report urges caution over French study only taking ART 4 days a week
@IAS_conference  see: link: http://i-base.info/htb/36517

There are studies: https://www.poz.com/article/atripla-taken-every-day-still-suppresses-hiv-high-rate

Alternate-day therapy is different than intermittent therapy and my dr explicitly expressed not skipping 2 days in a row, which is what they study your referring to does (4 days on 3 days off).
Change the way you view the world, and the world around you changes.

Offline jcelvis

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #7 on: March 31, 2020, 07:33:12 pm »
Hi there, I can only second what the others here said: there are no data supporting an approach to take ART only every other day in order to prevent side effects including weight gain. In fact, you state you have good adherence and I assume this results in being undetectable for an extended period of time. I personally would never risk this accomplishment. Instead, I would do a careful analysis of treatment history and select a treatment that keeps the U status and doesnít increase the risk for metabolic changes including weight gain. And there are dietary and life style changes that you could consider before risking to set you up for going through treatment failure. I would revisit this topic with your doctor. Good luck! Matt

You assume that I havenít done any dietary and lifestyle changes. This issue has been going on for 3 years, itís related to the new drug class TAF. Iíve been complaining about weight since this drug class was released and finally studies are confirming my observations:

https://www.sfaf.org/collections/beta/what-we-know-about-descovys-impact-on-weight-cholesterol/

Itís not a minor issue for me. Its wrecking my metabolism and cholesterol.
Change the way you view the world, and the world around you changes.

Offline leatherman

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #8 on: March 31, 2020, 08:05:09 pm »
There are studies
atripla is not biktarvy

You assume that I havenít done any dietary and lifestyle changes. This issue has been going on for 3 years,
why did you not return to your previous regimen or try a different regimen for the last 3 yrs?

You should have a discussion with your doctor about your side effects, and demand another regimen rather that suffer with this problem
leatherman (aka mIkIE)

Offline Matths

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #9 on: March 31, 2020, 09:12:57 pm »
Obviously you tried a range of measures but as you have noted you are experiencing what science seems to confirm now. I would recommend you go back to your doctor and discuss alternatives. And also read the literature with focus on switch studies in chronically suppressed patients, ie the TANGO study or others. But in any case you should create a timeline of all treatments you had in the past and list how you responded including side effects. Hope you can figure this out quickly! Matt

Offline jcelvis

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #10 on: March 31, 2020, 09:28:08 pm »
atripla is not biktarvy
why did you not return to your previous regimen or try a different regimen for the last 3 yrs?

You should have a discussion with your doctor about your side effects, and demand another regimen rather that suffer with this problem

Iíve been on 4 meds Atripla, Stribild, genvoya, biktarvy

Atripla and stribild are no longer accepts therapies by drug companies.




Change the way you view the world, and the world around you changes.

Offline Jim Allen

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #11 on: March 31, 2020, 09:55:02 pm »
There are studies: https://www.poz.com/article/atripla-taken-every-day-still-suppresses-hiv-high-rate

Alternate-day therapy is different than intermittent therapy and my dr explicitly expressed not skipping 2 days in a row, which is what they study your referring to does (4 days on 3 days off).

197 small sample size over 48 weeks with Atripla does not make Biktarvy last time I checked  ;)

Atripla is well known in small studies but it's not a first line (modern) treatment anymore. What your doctor is suggesting has not been studied in large human trials with modern (first-line) treatment as far as I know, only 4/7 days with mixed results, hence I said Guinea pig,

Weight gain is a known issue although there are multiple factors to it, I would suggest discussing it more with your doctor, cut out the binge dieting as you put it recently and prehaps re-discuss/review other treatment options instead of experimenting with dosages.

Whatever you decide, I wish you all the best and hope you find a resolution that works safely for you.

Guinea pig, interesting.

I don't know of any real world studies to back up the doctors claims on Biktarvy. Last and most recent attempt with modern ART and non daily treatment came with mixed results and a heatlh warning.

Anyhow, best of luck whatever you decide to do.

i-Base report urges caution over French study only taking ART 4 days a week
@IAS_conference  see: link: http://i-base.info/htb/36517

« Last Edit: March 31, 2020, 10:00:45 pm by Jim Allen »
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Offline jcelvis

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #12 on: March 31, 2020, 10:11:18 pm »
Realizing why I quit this community a long time ago.

Jim- interesting that youíll cherry-pick the articles to try to prove your point and on the other hand try to discredit mine.

 I donít need a lecture on studies. Are you a doctor?

Iíve been going to my dr since I was diagnosed. Iíve had multiple discussions with dr, Iím not new to this.

I asked whoís trying this, not should I do this.
Change the way you view the world, and the world around you changes.

Offline Jim Allen

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #13 on: March 31, 2020, 10:15:36 pm »
Look, knock yourself out, no lecture intended.

I was just pointing out to be careful, consider alternatives and re-discuss, like most of the people who kindly took their time to reply to you. I don't need an article to point out Atripla is not Biktarvy.

What your doctor is suggesting is unstudied in current first-line treatments.
I would point out the same again for anyone posting about an unproven treatment regime here.

Jim
« Last Edit: March 31, 2020, 10:55:58 pm by Jim Allen »
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Offline leatherman

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #14 on: April 01, 2020, 10:52:45 am »
What your doctor is suggesting is unstudied in current first-line treatments.
I would point out the same again for anyone posting about an unproven treatment regime here.
especially when there are other regimens that might not have the kind of side effect related here.

During the early years (90s-00s) I changed regimens a lot because side effects and then because of the huge improvement in treatment. Even though I have used 27 different meds through the last 28 years of treatment, I've been on my current treatment for nearly 6 years now, and before that I was on my last regimen for 10 yrs.

as someone who has switched meds, I would make a few more points for the OP and others to consider:

1. you don't always have to take a single pill regimen. there are plenty of two and three pill regimens

2.  you don't always need to change a regimen. Stopping side effects, saving money, reducing pill burden, moving to a more effective treatment are all good reasons. But if those issues aren't an issue, there may not be a reason to change.  While Atripla is not a first-line treatment, plenty of people have stayed on it for years. With my work in the Ryan White program, I know lots of people who still take Atripla - because it works for them. (personally I had horrible issues with Sustiva like a percentage of people did but if it works for these other people, good for them)

Is your regimen working for you (ie no side effects or manageable mild side effects, and remaining undetectable)? Sometimes not fixing something that isn't broken is the best option (and doesn't risk dealing with side effects the new med might cause ;) ).
leatherman (aka mIkIE)

Offline jcelvis

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #15 on: April 01, 2020, 01:04:24 pm »
Weíre in 2020. Quite a bit of advancements are occurring for people with suppressed viral loads

A couple of years ago no one was discussing two-drug regimes either.

 As much as you want to argue with me about this, thereís also no longitudinal studies on the how the constant level of elevated drug levels in the system is damaging our bodies. Toxicity is a concern for doctors and studies on regime simplification are happening and that includes methods such as alternate-day dosing.

You can be as conservative as you want in your approach to your medical treatment, stop treating me as I am unknowledgeable or that my doctor is incompetent because you donít agree with his strategy.

Iím looking for people who are trying this method and youíre hijacking this thread with your holier than thou, my method is better than your method, attitude. 
Change the way you view the world, and the world around you changes.

Offline zach

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #16 on: April 01, 2020, 03:04:59 pm »
Edited... it wasn't nice


« Last Edit: April 01, 2020, 03:08:23 pm by zach »

Offline Grasshopper

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #17 on: April 01, 2020, 05:18:42 pm »
Realizing why I quit this community a long time ago.



Offline leatherman

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #18 on: April 01, 2020, 06:59:13 pm »
my method is better than your method
LOL
it's not my "method", it's just the CDC/FDA approved dosage, but whatevs :D
leatherman (aka mIkIE)

Offline bocker3

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #19 on: April 01, 2020, 09:51:08 pm »
I'm not sure why folks are digging their feet in here.  The OP has made his stance clear -- a number of folks have (rightly) expressed their thoughts and provided some facts on his question.

Piling on like you are doing and going tit for tat with him isn't going to change his mind.  He trusts his doctor and is clearly planning to go forward.  So, if you don't agree, you gave your advice, now let it go.  Why push him away - it makes no sense.

To the OP -- you can't ask a question like yours and NOT expect pushback.  While, I feel, some have gone a bit too far and have delved into condescension, it was important to point out that this approach is unorthodox.  We certainly don't want newbies to think it's OK to do everyother day on their own.

It sounds like you are going forward with eyes wide open and with a doctor's blessing, so I wish you good luck.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
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May2015 969/28% <20

Offline Jim Allen

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #20 on: April 01, 2020, 10:42:36 pm »
@All

A small ask, if you're not posting in the thread to discuss the topic with the OP then please just let it be at this point. No point in continuing.


@OP

Nobody has denied that progress has been made, nobody has said your doctor is incompetent either or mentioned anything against the general idea of reduced drug levels and regime simplification. Bi/mono therapy conversations are nearly as old as me.

You posted something, so expect comments and if you react, then expect a response. It's a forum and not everyone will see eye to eye with you, neither do you have to agree with people, nobody until your last post was arguing beyond reasonable discussion giving the topic or attacking you, so no need for the drama.

People have expressed slightly different points of view, or experience than you, and/or genuine concerns regarding what you are suggesting, it's not surprising.

To keep this in good order, if you have issues with peoples posts and don't wish to discuss it reasonably then here are your limited choices:.

One, you can use the Report to Moderator link found at the bottom of any post.

Two, you can put that forum member on Ignore by using the link that appears at the bottom of the user information next to their post. You can unignore a member by going into your profile and taking them off the ignore list.

Three, and my favourite, simply ignore it.

Jim 
« Last Edit: April 01, 2020, 11:01:02 pm by Jim Allen »
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Offline JosephP

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #21 on: April 05, 2020, 01:17:48 pm »
Just got off the phone with my Dr, about the side effects of Biktarvy (weight gain/fat distribution in the lower abdomen region) . I've been undetectable for 10 years now.

My Dr says the Biktarvy drug is so powerful, that it's safe for me to not take the drug everyday. He says I can start taking the drug 1 day on/ 1 day off (alternating days, such as taking it every odd day).

Is anyone doing this?

I have been adherent for 10 years, but the weight gain in the stomach area is causing me undo stress.

As explained by my ID, one the meds in Biktarvy (and I don't recall which) has a median life of 36hours or so. BUT not the others which have a considerably less half life. According to my ID, the imbalance of having one drug still active while the others have decayed can prove to be troublesome as these components need to act together. I asked if I could go the same, one day on one day off...  Stay your course!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline downonmyluck

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Re: Alternating Days - Biktarvy Med - Not Taking Meds Every Day
« Reply #22 on: June 29, 2020, 07:26:22 pm »
Dear jcelvis,

Thank you for your question. I came across it while I was doing research on my own problem and I find it very helpful that you put this post up!

I am in the same boat. I am on Biktarvy and dealing with the weight gain and devastating fat distribution issues. I started looking into alternative dosing methods and here is what I've found that I would like to share with you.

1. Alternate dosing is very controversial. You won't find many people who will openly support it. The fact that you found a dr willing to go on the record saying you can take Biktarvy every other day is a miracle. Your dr seems very compassionate and open-minded. I wish I had a dr I could talk to honestly about these issues !

2. The study on Atripla alternate day dosing is specific to that drug. Atripla contains Sustiva which has a half-life of over 40 hours, so it makes every other day dosing possible. Biktarvy consists of Bictegravir (half-life 18 hours), Emtricitabine (half-life 10 hours) and TAF (plasma half-life 0.5 hours). TAF's short half-life raises questions about the possibility of developing resistance to the other drugs. However, from FDA site, The plasma TAF half-life is 75 times longer than TDF. Both agents also have very long intracellular half-lives. TAF's pharmacologically active metabolite, tenofovir diphosphate, has a half-life of 150-180 hours within PBMCs. So if alternate day dosing with Atripla has been proven non-inferior to daily dosing, could it also be the case with Biktarvy ?
https://www.fda.gov/media/129609/download
https://www.gilead.com/-/media/files/pdfs/medicines/hiv/descovy/descovy_pi.pdf

3. You are correct about advances in drugs and protocols used to treat and prevent HIV. Prep in Europe for example, is now being prescribed as a daily, every-other day or on-demand medication. An on-demand protocol for PREP which consists of 4 pills to be taken at certain times before and after sex is now approved. Dual therapy is no longer a myth, but has been proven to be non-inferior in studies and is approved in once-a-day pills like Juluca (Tivicay + Rilpivrine) and Dovato (Tivicay + Lamivudine).

4. Data from small-sample studies with alternative dosing has been promising but still shows resistance development in a small number of patients. A study of 4 days on/ 3 days off has shown some promising results with majority of patients remaining virologically suppressed at the end of the study, but a small number of patients developed resistance at the end of the trial. An earlier study of 5 days on/ 2 days off (FOTO) has also shown some promising results.

5. I have learned the hard way that resistance is to be avoided at all costs. The thing with resistance is that you won't know until you know, by then it's too late. Resistance to Integrase Inhibitors for example would significantly worsen someone's prognosis, at least mine. I have read articles about people who kept perfect adherence to their regimen for a decade and still developed resistance.

To conclude,
You deserve to have a dr who will listen to you and reason with you. Any side effects to the medication you experience are side effects to be addressed. I personally believe there is such a thing as being over-medicated. If I am experiencing side effects such as high cholesterol, pins and needles in my feet and severe lipo I am not functioning well as a whole. There is a point after full viral suppression is achieved that I believe maintenance dosing must be investigated !
Of course, pharmaceutical companies are not in a rush to investigate alternate day dosing because that would literally halve their revenue on the new blockbuster "i-phone 10" Biktarvy.

I myself am looking into alternatives to Biktarvy. I am also reaching out to doctors who can give me an educated opinion on alternate day dosing for Biktarvy in the meantime. As I said, that might be hard to find, but it's good to get dr's opinions on this. Here is a clipping I found by a dr. who is contemplating these very questions. The truth is until this is officially studied in a controlled clinical trial setting, any decision you take will be a personal trial with its own risks.
https://www.prn.org/index.php/prn_news/news/every_other_day_antiretroviral_maintenance_strategy

I hope any of this is helpful. I hope you understand the risks and that any potential benefits of Biktarvy every other day dosing with respect to the side effects you are experiencing may not be as significant as expected.
Please let me know how you are doing, you can reach out to me here or via dm.

Thanks,
downonmyluck
 

     

 


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