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POZ since 1994 Resistant to many classes. WTF..

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stevetool:
Hi everyone,

Resistance to many drug classes which was reveled during my last few visits to HIV specialist using a GenoSure. WTF? Viral load of 9000 to 11000 and Tcell count stable at high 350s. I never take drug holidays and Im methodical about taking me meds daily. My medication regimen during the Genotype was Tivicay & Descovy

GenoSure results:

NRTI class
Resistant To ALL with a heinous amount of mutations too long to list

Integrase class (resistant to all)
RALTEGRAVIR / Isentress      (predicted)
ELVITEGRAVIR / Stribild        (predicted)
DOLUTEGRAVIR / Tivicay      (predicted)
BICTEGRAVIR / Biktarvy        (predicted)

NNRTI Class
Doravirine / ‎Pifeltro     (Sensitive) Mutations - K101E, G190A, D237E

Efavirenz / Sustiva      (Resistant) Mutations - K101E, G190A

Etravirine / Intelence   (Sensitive) Mutations - NONE

Nevirapine / Viramune (Resistant) Mutations - K101E, G190A

Rilpivlrine / Edurant     (Resistant) Mutations - K101E


Protease Inhibitor Class
Alazanavir / Reyataz     (Resistant) Mutations - K20R, E35D, M36I, I50L, T74S, V82M, I85V

Darunavir / Prezista      (Sensitive) Mutations - K20R

Fosamprenavir / Lexiva (Sensitive) Mutaions - E35D, V82M

Indinavir / Crixivan       (Sensitive) Mutations - K20R, M36I, V82M, I85V

Lopinavir / Kaletra        (Sensitive) Mutations - K20R, T74S, V82M

Nelfinavir / Viracept      (Sensitive) Mutations - E35D, M35I, T74S

Ritonavir / Norvir         (Sensitive) Mutations - K20R, E35D

Saquinavir / Invirase    (Sensitive) Mutations - K20R, E35D, T74S

Tiprenavir / Aptivus      (Sensitive) Mutation K20R, E35D, M36I, V82M


So far my Doc suggested the use of

(1st option) Fostemsavir (Rukobia) as an addon to my current treatment (Tivicay & Descovy)

(2nd option) Darunavir (Prezista) Doravirine (Pifeltro).

(3rd option) Etravirine (Intelence), Ritonavir (Norvir) & Darunavir (Prezista)

I tried Intelence in 2010 and it caused Immune reconstitution syndrome (hello angry butt rashes). I was quickly taken off of it which explain having no resistance to it.

And my fear with Fostemsavir (Rukobia) is developing early resistance mutations to it it its going to be a new line of drug class.

I have been researching HIV resistance non stop for 5 days str8 and I cant seem to wrap my head around it.

My questions are,
(a) is Fostemsavir (Rukobia) going to be a new drug class for all HIV patients (treatment naive and treatment experienced patients)? Or is it always going to be considered a "savage therapy." And should I have concern about developing early resistance to it?
 
(b) Based on my Genosure what would you do? Or is there anyone who can make sense of these regimen choices based on my genosure and my doctors suggestions?

Im devastated. Been through such a hellish couple years including Large B Cell lymphoma, 5 months of chemo (cured it so far), Covid isolation, Mutable surgeries for my dog requiring 24/7 rehab (he's my only life line). 15 plus years of Lipoatrophy (no butt, sunken cheeks) and life long metabolic issues (thanks Zerit! Thanks drug companies who take no responsibility!). "well your alive" isn't an answer....

Honestly I feel like just stopping the HIV drugs and letting nature take it course. Im exhausted and need some support and hopefully some insight to these questions. I have no faith in my doctor although he is considered one of the best Infectious Disease Docs in my city.

Anyone...please...

Tonny2:


           ojo.    Hello there...Iím sorry about your situation. We, both, have, well, I had, two things in commun, diagnosed in 1994 and, I was sent home to wait for an opportunistic infection to kill me due to resistance in the summer of 2006...I know what you are going through, but, you have to do what you have to do, try the ďsalvage treatmentĒ as I did back in 2006...in October of that year the doctor offered me such treatment, I had nothing to lose, so, in January 2007 I started: DARUNAVIR/NORVIR, INTELENCE in March same year, my cd4 went up from 36 to 360 and for the first time since my dx in November 1994, I was uD, the doctor added ISENTRESS that month...now, you can take INTELENCE because your immune system is ďgoodĒ, so, I
guess, itís one of your options...please donít think that you will get resistance to the new class of drugs, just try it and donít worry until you have something to worry about...I hope my reply helps you...be strong...best wishes and donít throw the towel after fighting for all these years, I havenít done it even having lost almost my eyesight to CMV RETINITIS, and, Iím here, taking me forever to type this message...hugs.    ojo

Tonny2:


        ojo.       Itís me again...I forgot to let you know that Iím still taking the same treatment since 2007 and my cd4 level is 600-800, 33% and still UD...you need Ů, not only, skip doses, but take your meds as directed, mine are supposed to be taken with food...best of luck and, please, keep us posted...hugs.             ojo

stevetool:
OJO thank so much for the encouraging words, for reading my post thoroughly and for reminding me thereís others out there just like me.

So in 2006 they sent you home to die (horrifying Iím so sorry), then, in early 2007  they offered salvage therapy I.e intelence, prezista and Norvir ? And youíve been on that regimen from 2007 to 2020 (with the added Isentress) achieving t-cells in the 600/800ís and UD??? This whole time?

Am I getting this right? This seems very encouraging.

I am resistant to Isentress but...still...

stevetool:
...I have no resistance to Isentress, Only one resistant mutation to prezista, and 2 resistant mutations to norvir. But they all show as "sensitive" or "all systems go" in my genotype. So they are still strong options.

My fear with  Fostemsavir (Rukobia) is it only recently been approved be the FDA (July 2020). I'd like to see how it fairs in the general public for a year before jumping on it. Although I would change my mind on that if I knew Fostemsavir (Rukobia) was specially only for savage therapy.

I still cant find the answer to the question - is Fostemsavir (Rukobia) the next front line drug therapy class? Or is it savage only therapy. I going to ask my doc tomm.

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