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Main Forums => Living With HIV => Topic started by: SFlSurvive on July 06, 2022, 08:08:42 pm

Title: Cabenuva problem. Im scared
Post by: SFlSurvive on July 06, 2022, 08:08:42 pm
So i started Cabenuva about 2 months ago. It took about 6 months for my doctor to approve me. I figured he went through all my charts to approve me. I have taken 2 shots so far. I recently went through ny charts and i had a phenotype resistance test in 2016 which shows I have a low level resistance to the ripilvirine which is one of the medicines in cabenuva. There was a genotype resistance test done in 2018 and it showed I was not resistant to riplivirine. So now i have been on this combo for 2 months and I guess I was not supposed to ve eligible for it. I dont understand how I was approved when I was not suppose to. Now i am scared I will become resistance to all the art regimens and my disease is progressing. I am scared and cant sleep. This is killing me. I was undetectable for 4 years on biktarvy now im afraid it wont work fot me again. This is horrible.
Title: Re: Cabenuva problem. Im scared
Post by: daveR on July 06, 2022, 09:12:30 pm
Raise the issue with you health care provider. Unfortunately there won't be a great deal that can be done through the internet. If it is the same Dr who has been treating you from day one he should be fully up to speed with your resistance history.
I see no reason why you can't switch to another oral regime if required. There are many to choose from.

Dave
Title: Re: Cabenuva problem. Im scared
Post by: SFlSurvive on July 06, 2022, 09:46:47 pm
Thanks for the reply Dave. I really just needed to vent. This resistance thing just really scares me. I am hoping for a good outcome because I really enjoyed not having to think about taking a pill everyday.  :)
Title: Re: Cabenuva problem. Im scared
Post by: Jim Allen on July 07, 2022, 12:51:30 am
Sorry to hear that this has you concerned.  Have you spoken to your doctor about these concerns?

Reassuring to see that the 2018 resistance test showed it didn't have drug resistance to rilpivirine.

Before starting the shots, was the protocol followed for one month of taking cabotegravir and rilpivirine pills? During that time and since then on the shots, has the viral load been checked?
Title: Re: Cabenuva problem. Im scared
Post by: SFlSurvive on July 07, 2022, 02:27:51 am
Hey Jim. Yes I did take the pills for 30 days before getting the first injection then I got another injection 30 days after that. I just had my labs done last week so I will see if it's working hopefully by next week the latest. My anxiety is through the roof waiting for the results! My doctor had me take another resistance test yesterday to see what it shows now. He says I shouldn't start the biktarvy again until we see the outcome but another dr in the office says I should since the first test showed some resistance. So I will just wait and see. Thanks for responding to my post!
Title: Re: Cabenuva problem. Im scared
Post by: SFlSurvive on July 08, 2022, 03:48:29 pm
Still undetectable so it seems to be working thank God. Waiting on the next resistance test to see if I need to switch still.
Title: Re: Cabenuva problem. Im scared
Post by: leatherman on July 09, 2022, 07:38:16 am
My anxiety is through the roof waiting for the results!
try not to let this get to you so much. IF resistance is an issue and you have a rising VL, you can simply go back to your previous regimen.

It took about 6 months for my doctor to approve me.

i had a phenotype resistance test in 2016 which shows I have a low level resistance to the ripilvirine which is one of the medicines in cabenuva. There was a genotype resistance test done in 2018 and it showed I was not resistant to riplivirine.
do you not trust your doctor's opinion? I'm not saying to blindly follow; but surely y'all discussed this change and you agreed to it for your own reasons, right?

So 6 yrs ago you have a "low level" resistance; 4 years ago you had no resistance, and yet you are quite worried? Have you since mentioned this to your doctor and gotten his stance on this topic.

While I'm not a doctor, I can offer a suggestion of what might have occurred based on what happened with my virus. You developed a low level resistance; you stayed UD for a few years; the HIV with resistance all died out; the latent HIV in your system (that's why we take daily meds to keep this HIV suppressed from reproducing) never had that resistance; and now your HIV is once again not resistant to the med.

Still undetectable so it seems to be working thank God. Waiting on the next resistance test to see if I need to switch still.
um, is this a current undetectable result? if that's true then Cabenuva is working for you, period, the end. No need to switch. ;)
Title: Re: Cabenuva problem. Im scared
Post by: SFlSurvive on July 10, 2022, 10:28:10 pm
Thanks for the reply leatherman. Yes I just received my lab results the other day and I am still UD. I worry myself crazy at times and need to get my anxiety under control! I really appreciate your input.
Title: Re: Cabenuva problem. Im scared
Post by: leatherman on July 11, 2022, 03:31:41 pm
I worry myself crazy at times and need to get my anxiety under control! I really appreciate your input.
hey! great news! :D


I'd be lying if I didn't say, after 30 yrs of meds, that I didn't get anxious about my test results sometimes. It was so much worse in the early years. Not only was I dealing with changing meds all the time, but I spent a lot of years seriously "aidsy", so I was always tripping about lab results.

Then for the last decade, after miraculously getting a lot better (I guess I just needed a couple decades of meds to knock my HIV on it's ass! LOL) I've worried about whether my results would suddenly start to go bad again. But these days, I don't feel like the "other shoe is going to drop" (and return me to the "bad ol' days"); instead I "worry" that my CD4 count is getting too high. ROFL I mean going over 500 once was freaky; but in the last 2 years, it's gone over 500 three times and even hit 714 once!! WTH I lived for less than 300 cd4s for nearly 25 years, what the heck am I going do to with double that?!?   ;D  ;D


That's about be great using Cabenuva, so kudos again to the great results!
Title: Re: Cabenuva problem. Im scared
Post by: SFlSurvive on July 11, 2022, 09:33:03 pm
Thanks so much! You are an inspiration!  :)