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Author Topic: POZ since 1994 Resistant to many classes. WTF..  (Read 634 times)

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Offline stevetool

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POZ since 1994 Resistant to many classes. WTF..
« on: September 07, 2020, 02:06:19 pm »
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...
« Last Edit: September 07, 2020, 02:15:14 pm by stevetool »

Offline Tonny2

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Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #1 on: September 07, 2020, 04:20:58 pm »


           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

Offline Tonny2

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Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #2 on: September 07, 2020, 05:46:45 pm »


        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

Offline stevetool

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  • Posts: 6
Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #3 on: September 07, 2020, 09:51:07 pm »
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...

Offline stevetool

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  • Posts: 6
Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #4 on: September 07, 2020, 10:42:07 pm »
...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.

Offline Tonny2

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Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #5 on: September 08, 2020, 08:40:24 am »


          ojo.        Hi again...yes, everything I replied to you happened to me in August 2006. I was told there was no more medications for me due to resistance, in October same year, my doctor called me to let me know that a pharmaceutical company was offering to people like me (history of resistance) a ďsavage treatmentĒ, it wasnít approved by the FDA yet (I got the treatment free for a year), and it saved my life...rukobia, first time of heard about this med, according to what you mentioned, ďsavage treatmentĒ, itís the same thing they used to call my treatment, the only difference is that rukobia is already approved by the FDA...talk to you doctor about the treatment Iím taking, it might help you if you want to wait for rukobia experience by others. Your cd4 are good, still, have supposed yo are ud, arenít you?, if not, I would go ahead and start the new med in combination with other meds you are not resistance to...I had no choice back in 2006, cd4 36 and VL in the Mullins, thatís why I decided to take the ďsavage treatmentĒ...best of luck...hugs

Ps. English is my second language and Iím legally blind, sorry for the mistakes

Offline leatherman

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Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #6 on: September 08, 2020, 09:58:57 am »
ďsavage treatmentĒ
"salvage" ;) treatments sometimes are taking more than just regular 3-med regimens. Adding a 4th or 5th med, ones that you might even be mildly resistant to, can help keep HIV under control

...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.

wikipedia https://en.wikipedia.org/wiki/Fostemsavir
"Fostemsavir, sold under the brand name Rukobia, is an antiretroviral medication for adults living with HIV/AIDS who have tried multiple HIV medications and whose HIV infection cannot be successfully treated with other therapies because of resistance, intolerance or safety considerations.[1][2]

The most common adverse reaction is nausea.[1][3][2] Severe adverse reactions included elevations in liver enzymes among participants also infected with hepatitis B or C virus, and changes in the immune system (immune reconstitution syndrome).[1]"

Fostemsavir is an HIV entry inhibitor and a prodrug of temsavir (BMS-626529).[medical citation needed] Fostemsavir is a human immunodeficiency virus type 1 (HIV-1) gp120-directed attachment inhibitor.[4] It was approved for medical use in the United States in July 2020.[1][3][4]"

Cobicistat https://en.wikipedia.org/wiki/Cobicistat
"Cobicistat is a drug analogue of ritonavir, in which the valine moiety is exchanged for a 2-morpholinoethyl group, and the backbone hydroxyl group is removed. These changes effectively eliminate the anti-HIV activity of ritonavir while preserving its inhibitory effects on the CYP3A isozyme family of proteins.[6] Cobicistat is therefore able to increase plasma concentration of other coadministered anti-HIV drugs without the risk of causing cobicistat-resistant mutations in the HIV virus"

cobicistat is a booster like norvir. the combo of darunavir/cobicistat is marketed as Prezcobix by Janssen
leatherman (aka mIkIE)

Offline stevetool

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  • Posts: 6
Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #7 on: September 08, 2020, 10:37:44 am »
I meant to say I have NO resistance to Intelence.
I DO have resistance to Isentress.

But hearing that Tonny2 stayed on intelence, prezista, Norvir, Isentress, and has suppressed his virus for 12 years is very encouraging. As I said in my first post. My T-cells's are in the high 300s and my viral load is 11000 atm.

Also thanks leathermanfor the info about Cobicistat, darunavir/cobicistat & Prezcobix. I was unaware of cobicistat & Prezcobix and my doc didnt even mention it during our talks

I have a call in to my current ID doctor today and made an additional appointment with another ID HIV specialist on Friday for a second opinion.

Both of your responses have given me lots of hope! I will update on whats happening as it happens here. Thank you thank you thank you!

Offline stevetool

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  • Posts: 6
Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #8 on: September 12, 2020, 01:19:43 pm »
Ok...Spoke to in ID Doc. Not feeling so confident.

The regimens im presented with are:
Prezista Norvir (as booster) and Intenece
OR
Prezista, Cobicistat (as booster) and Intenece.

The amount of conflicting information regarding the use of boosters such as Cobicistat or Norvir with this regimen is outstanding, mainly because of Intelence. Studies from 2015 to 2020 show conflict, while studies prior to 2015 dont.

Apparently taking Norvir or Cobicistat with Intelence and Prezista cause significant reductions of Intelence and Prezista concentrations depending on which study you read.

Example - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5702580/
Although a phase II single arm study in HIV-infected subjects of darunavir 800 mg/ritonavir 100 mg daily plus etravirine 400 mg daily showed no significant changes in either darunavir or etravirine with coadministration,21 an open-label, fixed sequence study in 30 HIV-infected subjects showed marked reductions in cobicistat (30% reduction AUC, 66% reduction in C24h) and 56% reduction in darunavir C24h with coadministration of darunavir 800 mg/cobicistat 150 mg and etravirine 400 mg daily compared to darunavir/cobicistat administered alone.22 The darunavir/cobicistat monograph states that coadministration of etravirine is not recommended.23 If therapy with both etravirine and darunavir is required, ritonavir may be the preferred booster.

My doc is leaning towards Cobicistat as the preferred booster, but I've found at least 6 studies showing Norvir to be the preferred booster. To make this even more complicated, Ive also found other studies showing Cobicistat to be the preferred booster with this regimen.

Oddly all studies using Prezista and Norvir or Cobicistat (as booster) without Intellence showed increases in Prezista concentrations and have wonderful clinical results. But this is considered a dual therapy model. I think with my resistance profile, I need a minimum of 3 antiviral medications.

I am resistant to Isentress, so the super well studied and effective combo of  DARUNAVIR/NORVIR, INTELENCE/ISENTRESS is not possible for me.

Again Im resistant to all NRTI's, sensitive to only 2 NNRTI's (Intelence & Pifeitro) and sensitive to all PI's except reyataz & Aptivus.

Ive emailed my doc about 1000 times. He is considering all the studies and conferring with colleges.

Im at a loss here. And im cross eyed from reading studies that conflict with each other.

Anyone have any thoughts?

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #9 on: September 13, 2020, 09:27:46 am »
It would be useless if I tried to make comments about your drug choices ,For past 15 to 20 years I have with vigour found Docs who are sane and are able to communicate once found I go alone with there advice. Itís a method.
What I do want to say was your description of your awfull year I do recognise,
So  I know the feeling of    Fuck it let nature do it,s thing.
          Reading your descriptions,has reminded me of my own process ,I get into that Zone when I am overwhelmed and then the only thing that works( for me) is a brief holiday from it all. And during the holiday wait to see if a decision surfaces. You,ve had five days of research ,enough to make the freelance researcher give there self a weekend.
 Be with your dog , you still have choices and you will make a decision but first have a break from all this shite and try to count some daisies.
Best wishes ,m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline stevetool

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  • Posts: 6
Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #10 on: September 17, 2020, 01:28:51 pm »
Ok so...after much review I decided on Prezista, Intelence and Norvir (as booster). 

Using cobicostat with Intelence isnt even suggested by the company who make all three of these medications (Jannsen). Apparently the co-administration of cobicostat with Intelence causes weaker concentrations of Prezista which can potentially be a setup for Prezista resistance. This is also confirmed by 3 studies carried out from 2016 to 2020. And more clinical trials are underway.

This is not the case for using ONLY Prezista and Cobicastat (dual therapy).

Ive committed to viral load tests every three weeks. I should have first VL results in about 2 weeks.

Just updating whats going on. Im thrilled about none of this...

Just a heads up on what im doing.



Offline leatherman

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Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #11 on: September 17, 2020, 02:29:28 pm »
best wishes on this being the right combo for you!!!  ;) :)
leatherman (aka mIkIE)

Offline Tonny2

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Re: POZ since 1994 Resistant to many classes. WTF..
« Reply #12 on: September 17, 2020, 08:04:56 pm »


                 ojo          hello again...I'm glad you finally decide to take that new treatment, as I told you before, I was offered that treatment as a salvage treatment, I had just 36 cd4, now, after 13 years with the same treatment plus raltegravir, my cd4 is 600-800, 39% and still UD....Please keep us posted and best of luck....             ojo

 


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