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Author Topic: Questions re Changing Anti-Retro Regimen  (Read 907 times)

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Offline Valence

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Questions re Changing Anti-Retro Regimen
« on: July 16, 2019, 05:51:17 am »
I am sorry this is so long.

I am considering changing my anti retro regimen.  I have three questions.  First I will give you the three questions.  Then I will provide  relevant info re my health:

1)  Do you believe that the NNRTI Pifeltro is more successful in combatting resistant strains of the virus than intellence.   My doctor said that it would or should.  But I wonder:  A) Intellence was created to help patients who were resistant to the old  NNRTI’s Sustiva and Delavradine and it had a lot of anti viral activity in patients whose virus was resistant to those drugs. B) Also, when I read the info that the drug company  released, they said that Pifeltro worked swimmingly in treatment naïve patients.  But, hell, treatment naïve patients are less apt to have resistance.  w/o info on its use in treatment experienced patients, why should I believe that it is good at fighting resistant virus.   

2)  Do you  know what percent of patients, on Pifeltro, had psychiatric symptoms.  I heard that like sustiva it can induce weird dreams.
   
3)  I am currently on 4 drugs:  Descovy,  Intellence,  Prezista and Norvir.  (Since discovy is a combo, it is really five drugs) .  I used to be very fit.  Now I am fat and weak because of a) lipoatrophy, b) lipodystrophy and c) muscular dystrophy (myotonia).  Do you think that replacing this regimen with Biktarvy and Pilfeltro would perhaps alleviate my lipo dystrophy and lipo atrophy. 

Background (med history):  Viral load undetectable for years.  T cells 683.   I have lots of resistance to the NRTIs.  With regard to the NNRTIs, the testing is discordant; genotype testing shows no resistance to Delavridine and Sustiva, but very old phenotype testing showed marked resistance (Folds over 50).  I have resistance to only one PI, viracept, which I was on from 97 to 2000.  Although my virus is held in check by the PIs, I want to scrap my norvir and prezista and go for Biktary and either Pilfeltro or Intellence because I hope it will improve body habitus, or physique. 

I sero converted in 82 or 84 and started AZT monotherapy in 1992.  Hence, the widespread resistance to the NRTI’s.  My muscle symptoms began in the early to mid 90’s.  Genetic testing and aberrant EMGs confirmed the presence of myotonic dystrophy in around 2008.  I was also found to have CIDP, an autoimmune condition in which the immune  system gangs up on the myelin sheathes in the peripheral nervous system; this disorder, I have been told, might be more common in HIV.     

Sorry this is so long.  I appreciate your responses.

Offline Valence

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Re: Questions re Changing Anti-Retro Regimen
« Reply #1 on: July 22, 2019, 06:20:22 pm »
I posted a message re a medication change and I got no responses.  I will now offer an abbreviated version of the message.

I am considering changing my anti retro regimen.  I have two questions. 

1)  Do you believe that the NNRTI Pifeltro is more successful in combatting resistant strains of the virus than intellence.   My doctor said that it would or should.  But I wonder:  A) Intellence was created to help patients who were resistant to the old  NNRTI’s Sustiva and Delavradine and it had a lot of anti viral activity in patients whose virus was resistant to those drugs. B) Also, when I read the info that the drug company  released, they said that Pifeltro worked swimmingly in treatment naïve patients.  But, hell, treatment naïve patients are less apt to have resistance.  w/o info on its use in treatment experienced patients, why should I believe that it is good at fighting resistant virus.   

2)  Do you  know what percent of patients, on Pifeltro, had psychiatric symptoms.  I heard that like sustiva it can induce weird dreams.
   

Offline Jim Allen

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Re: Questions re Changing Anti-Retro Regimen
« Reply #2 on: July 22, 2019, 06:36:45 pm »
This needs a longer response, although I am opting out from doing so

I have merged your threads thought as it's the same topic, if you wish to dump a topic up that's fine but don't create near duplicate threads

Thank you.
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Offline leatherman

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Re: Questions re Changing Anti-Retro Regimen
« Reply #3 on: July 22, 2019, 07:52:30 pm »
My doctor said that it would or should.
either fire off an email or leave a phone message for your doctor to explain his/her reasoning  ;)

2)  Do you  know what percent of patients, on Pifeltro, had psychiatric symptoms.
https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/210806s000lbl.pdf
"Section 6.1 Clinical Trials Experience" has a lot of info comparing Pifeltro with other regimens
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline harleymc

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Re: Questions re Changing Anti-Retro Regimen
« Reply #4 on: July 23, 2019, 04:51:00 am »
These are questions for an ID doctor with whom you've had a consultation, not lay people.

Offline virgo313

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Re: Questions re Changing Anti-Retro Regimen
« Reply #5 on: July 23, 2019, 12:54:21 pm »
“5 drugs combo”. Wonder how many (%) people is on 5 drug ART?
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline leatherman

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Re: Questions re Changing Anti-Retro Regimen
« Reply #6 on: July 23, 2019, 05:03:14 pm »
“5 drugs combo”. Wonder how many (%) people is on 5 drug ART?
lots of pre-haart and early-haart long term survivors have resistance issues and are 4-6 drug regimens. sometimes these have been called "salvage regimens" because these multiple drug combos are kind of a last-ditch effort (throwing everything and the kitchen sink) to stop multi-resistance HIV.

How many exactly or percentage-wise I don't know. My personal experience is about half-n-half of my LTS friends are on these kinds of regimens. I used to be on a salvage regimen myself but thanks to some of my resistance issues being non-viable mutations, I've been able to switch to some newer meds and have gone from a 4 drug to a 3 drug combo in the last 10 yrs.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline bocker3

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Re: Questions re Changing Anti-Retro Regimen
« Reply #7 on: July 24, 2019, 06:44:43 am »
“5 drugs combo”. Wonder how many (%) people is on 5 drug ART?

I tested poz in 2005 and my virus has low level resistance to just about every nuke, so I take Sustiva, Descovy and boosted Reyataz.  That 4 drugs (5, if you count the Norvir booster on its own).  Been taking all those (Truvada before Descovy) since 2007.

M
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2015 969/28% <20

Offline virgo313

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Re: Questions re Changing Anti-Retro Regimen
« Reply #8 on: July 24, 2019, 11:41:18 am »
Hello leatherman & bocker3,

Thank you, i learned additional info today. Thanks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

 


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