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Author Topic: Bi-monthly injectable  (Read 1755 times)

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Offline LeftyBowler300

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  • Posts: 103
Bi-monthly injectable
« on: May 28, 2022, 03:49:27 pm »
My doctor gave me the option to switch from daily Biktarvy to bi-monthly Cabenuva injections.
I’m usually of the “if it’s not broke don’t fix it” mentality, and Biktarvy has been working superbly.
I’m also skeptical of cab’s longevity. It’s taken me a while to climb CD4, and I don’t want to lose it with a viral rebound  ;).
However, the paranoia of “Crap, did I take my pill today?!?” *dumps out bottle and counts pills* is something I can most certainly live without.
I also wouldn’t mind not having pill bottles to hide when guests come over.

So I’m looking for success/fail stories of people who are or have been on the injection.
Do you like it better than pills?
Were/Are you able to maintain an undetectable viral load?
How convenient/inconvenient is timing the doctor visit for your next injection?
Does your butt hurt?  ;D
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..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Bi-monthly injectable
« Reply #1 on: May 28, 2022, 07:41:03 pm »
However, the paranoia of “Crap, did I take my pill today?!?” *dumps out bottle and counts pills* is something I can most certainly live without.
I also wouldn’t mind not having pill bottles to hide when guests come over.
totally off the topic you were asking about, but have you thought about a pill organizer? at our house, we keep all bottles of medications in an insulated-zippered lunch bag stored in the closet, while one week's worth of pills is in a weekly pill organizer, hidden in a desk drawer. No one sees our meds and I know if I've taken today's meds. Maybe something like that would help you ;)
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: Bi-monthly injectable
« Reply #2 on: May 29, 2022, 02:47:04 am »
I'm not sure I know anyone on the bi-monthly injections yet, so if you do switch, please keep us posted on how you get on.
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Offline daveR

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  • Posts: 258
Re: Bi-monthly injectable
« Reply #3 on: May 29, 2022, 03:54:56 am »
Discussed injectables with my Dr during my last visit. I don't think they are even available here yet. Her advise was to wait and see a bit longer. She wasn't even keen on switching me to a two drug oral regime yet as in her opinion they have not been around long enough. I tend to agree with here. Kudos to the guys who do step up and prove the drugs work long term though.

Dave

Offline Matths

  • Member
  • Posts: 89
Re: Bi-monthly injectable
« Reply #4 on: May 29, 2022, 08:25:28 am »
Hi DaveR, reading your comment prompts my response. I can’t follow your doctor’s reasoning at all. There were several clinical trials performed to address the monthly and bi-monthly injections, with and without oral lead-in treatment phase. All these studies clearly demonstrated that this treatment regime works. Now, there are reasons why someone may opt in or out from switching to this treatment. I, for example, opted out because I’m well treated with Dovato. However, the argument to “wait and see” seems awkward to me. Wait for what? See what? The anecdotes of patients and/or other doctors who will provide either single-case “evidence” or biased personal experiences? And both should outweigh the evidence from carefully designed and well-executed clinical trials? If I had to weigh both, I’d trust the clinical trial evidence and use that for guiding my treatment decisions or treatment recommendations. Best Matt

Offline daveR

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  • Posts: 258
Re: Bi-monthly injectable
« Reply #5 on: May 29, 2022, 08:37:33 am »
Hi Matt, my Dr seems to prefer the wait and see approach with anything new. You mentioned Dovato, I discussed that with her on my last visit so I could drop the Abacavir, again she was not enthusiastic. Wait another year, see how it plays out long term in the wider population. There are times when I think I learn more from reading this forum and the Poz website than I do from her.

Dave

Offline Tonny2

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  • Posts: 2,594
Re: Bi-monthly injectable
« Reply #6 on: May 30, 2022, 02:20:33 am »
totally off the topic you were asking about, but have you thought about a pill organizer? at our house, we keep all bottles of medications in an insulated-zippered lunch bag stored in the closet, while one week's worth of pills is in a weekly pill organizer, hidden in a desk drawer. No one sees our meds and I know if I've taken today's meds. Maybe something like that would help you ;)

Offline Matths

  • Member
  • Posts: 89
Re: Bi-monthly injectable
« Reply #7 on: May 30, 2022, 05:50:16 am »
Hi Dave, I totally agree with you. This forum is a rich source of wisdom in every aspect. Just to play devils advocate: at your next visit you can ask her how she collects the information about the “wider population”? From pharm rep visits? Anecdotal evidence that it works in 3 patients, but not in 1? While studies included 100eds, if not 1000eds of patients in controlled trials? Anyways. Don’t want to come across as annoying but a mindset like your doctor’s irritates me as you can sense. Best Matt

Offline Pirata

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  • Posts: 67
Re: Bi-monthly injectable
« Reply #8 on: May 30, 2022, 10:09:58 am »
I am in the same situation than you. I’m on Biktarvy, and my CD4 counts have been slowly improving. When I talked to my doctor about the injections, he told me there were like 17 patients on it, he also told me they out of the 17, one person viral load went up and he developed resistance to treatment. I was so scared about that that I desisted and told him I was going to wait one more year. He also told me, he can assured me the efficacy of Biktarvy as 100% but he could not do the same for the injections. As I said before, I am going to wait one more year and then I will have this conversation again

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Bi-monthly injectable
« Reply #9 on: May 30, 2022, 08:44:19 pm »
However, the argument to “wait and see” seems awkward to me. Wait for what? See what?
wait and see if the long term results hold up. Will this injection medication still be effective after 5 yrs of use? How easy or hard is it for resistance to occur? Are there any negative effects after long term use?

Because not every trial HIV medicine has worked out in the long run, many people are loathe to jump onto whatever the newest med is until a few years have gone by (and really just how long should we wait for "long term" effects? 2 yrs? 10 yrs?).

Also many people tend to go with the "if it's not broke, don't fix it" adage.

for me, this injectable as a once-a-month medication just wasn't worth it. A 50-mile drive (costing gas and time)  to the doctor (paying for a visit) for an injection (an expensive injection) just to drive back home (more gas and time) was simply not worth changing the regime I'm already on. Besides, along with two daily HIV, I have several other pills. It's really not that hard to just keep on my current regime since I'm already taking meds during the day.

but you know, it's all about the regime and routine that works best for each of us. thank goodness there are choices....unlike the bad ol' days.

There are times when I think I learn more from reading this forum and the Poz website than I do from her.
for 23 yrs, since aidsmeds.com started in 99, this site has always kept me better and faster informed than all of my doctors.

Not to diss any of my doctors, of course! I mean Dr. Marcantonio Fiorentino :-* kept me alive by convincing me things would get better if I just hung on a while longer!  :D  :D He was also there in the hospital, snowed-in during a blizzard, when we realized just how sick Jim was  :'( So yeah, I have had several great HIV doctors (just one bad one; and the best one is actually a PA HIV specialist) but I've always got my eyes on HIV news.  ;)
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline TGun

  • Member
  • Posts: 71
  • Happy to be alive
Re: Bi-monthly injectable
« Reply #10 on: June 08, 2022, 12:07:37 am »
spoke with my ID multiple times about CAB injections,, he also said he perferred to wait a bit and see how effective CAB is before switching me.

 


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