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Author Topic: Any thoughts about my new combo? Feeling a bit shaky about my MD's choices.  (Read 212 times)

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Offline grenouille

  • member
  • Posts: 2
Hey folks,
Old timer here. Started meds early on and have resistances to every drug classification.

Strangely when I take one of each I get an undetectable VL. My t-cells are now in the 800's which almost seems absurd to me. 40 to 800 in only 15 years!!! ;-).

Alas I've got to get Tenofovir out of my combo because of kidney damage.

Old combo: Intelence, Norvir, Prezista, Isentress, Truvada.
Proposed new combo: Intelence, Norvir, Prezista, Isentress, Epivir.

We'll see how it works but wondering if I should be more proactive (as I get older I have started to let docs make more decisions be less feisty).
Any ideas?

Thanks a ton

Offline harleymc

  • Member
  • Posts: 214
Re: Any thoughts about my new combo? Feeling a bit shaky about my MD's choices.
« Reply #1 on: September 18, 2014, 06:19:09 PM »
The joys of multi-class resistance & side effects.

You know how it goes.. it's suck it and see for any new/ recycled / salvage combo.

Good luck and keep us updated on how you're going.

Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: Any thoughts about my new combo? Feeling a bit shaky about my MD's choices.
« Reply #2 on: September 18, 2014, 07:44:24 PM »
I know someone who takes very close to what you are switching to, and it has served him very well.
He has multiple drug resistance issues as well.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline J.R.E.

  • Member
  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Re: Any thoughts about my new combo? Feeling a bit shaky about my MD's choices.
« Reply #3 on: September 18, 2014, 07:50:41 PM »
Hi and Welcome,

I Can't really give you advice on the resistance issues,  just don't have the knowledge, But I am wondering,...

Your old combo was : Norvir, Prezista, Isentress, Truvada

Proposed combo:   Intelence, Norvir, Prezista, Isentress, Epivir.

Since your Truvada is being dropped, because of kidney issues, I am assuming this is due to the Viread portion of Truvada ?  Why not stick with the Emtriva portion of Truvada, since you know it works.

I guess what I am trying to say is why not continue with Intelence, Norvir, Prezista, Isentress,  and( Emtriva) instead of Epivir.

Like I say, I am really not knowledgeable on this, just thought I'de ask.

One other thing,..Have you considered asking Dr. Joel, about this proposed combo, and getting his thoughts on it ?

You can ask Dr. Joel Gallant just about anything, and get some more advice. It may take a few days to get an answer, I asked him a question back in 2004, when he was with Johns Hopkins.

If you haven't check it out give it a try:

http://hivforum.tumblr.com/


Take care and wishing you the best, please keep us updated---Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline wolfter

  • Member
  • Posts: 4,539
Re: Any thoughts about my new combo? Feeling a bit shaky about my MD's choices.
« Reply #4 on: September 18, 2014, 07:56:12 PM »
I have pretty horrible resistance issues and also take multi pills a day.  At this point, I pretty much let my doctor make these tough recommendations as it's so daunting.  I recently demanded a switch due to severe insomnia and couldn't be happier with my current one.

It certainly can't hurt to try the new combo and monitor your labs and see if you tolerate them well.  My doctor said it's always a possibility to switch back if we're trading one issue for another one.

best of luck
Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline grenouille

  • member
  • Posts: 2
Yes - thanks so much guys.
Your replies really feel good.

1 - I have posted the to handsome Dr Gallant's (funny) site. We'll see what he suggests.

2 - I like the idea of just using one of the meds from the Truvada combo. I don't know if this doc likes to just bomb the fuck out of a multi-resistant virus or if there is some kind of strategy in changing to a completely different molecule in the same class.

This is coming at a strange time:
- a year ago I started a small business after 10 years of disability. It is going really well but in a town where NO ONE seems to want to talk about the presence of HIV.
- ten months ago I developed pretty debilitating neuropathy. Til now I was the only person I know from my era/cohort who had never experienced it!! Shit! Gabapentin doesn't hit it very hard. The nephrologist is suggesting that the Tenofovir MAY be responsible for that as well.

So I'm eager to get rid of it yet scared of starting the whole Russian Roulette game of trying a new molecule each month til we find the right one.

(And the idea of a daily injection doesn't exactly tickle my fancy).

I'll keep you all posted. Again thanks for the community support.
GR

Offline J.R.E.

  • Member
  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.

 ten months ago I developed pretty debilitating neuropathy. Til now I was the only person I know from my era/cohort who had never experienced it!! Shit! Gabapentin doesn't hit it very hard. The nephrologist is suggesting that the Tenofovir MAY be responsible for that as well.


GR


Hello GR,...

I think it's hard,  to determine if it's the meds or long term HIV that may cause the Neuropathy.

One more thing,  I see nothing mentioned as as far as Neuropathy, with Emtriva.  I do see Neuropathy as a possible side effect with Epivir.

This is from the Lessons, so this may be worth mentioning to your Doctor as well, since you are already dealing with Neuropathy.

This from the lessons:

http://www.aidsmeds.com/archive/Epivir_1579.shtml

""Another rare side effect of lamivudine is peripheral neuropathy, which can result in pain, tingling, numbness, or burning in the hands and/or feet. Stopping Epivir and starting another NRTI that does not usually cause peripheral neuropathy—for example, zidovudine or abacavir—is often the best way to stop peripheral neuropathy."


I have neuropathy, but I am also on Epivir. So who knows, but I currently don't take anything for it !  ???



Take care of yourself, ----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,783
  • How am I doing Beren ?
I agree with Ray . I developed raging PN about 10 years into living with HIV after being on interferon for KS but I had already began having some problems before treatment . Long term HIV can also cause PN meds or not . I am on Intelence/Truvada and am very happy with the combo ... the Tootvada gives me gas but I live with it LOL . 

Welcome to the forums and look forward to hearing more from you !

Offline J.R.E.

  • Member
  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Hello GR,...

I see that Dr. Gallant has already responded to your question.  How do you feel about his response, and about the possibility of using Tivicay, over  Isentress


Don't hesitate to follow through with him and to give him additional details if you have them about the Kidney or resistance issues !! I haven't asked Dr. Joel a question in a long time, so I am not sure if there is a character limit in asking questions.


All the best---Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Tonny2

  • Member
  • Posts: 303
Hey folks,
Old timer here. Started meds early on and have resistances to every drug classification.

Strangely when I take one of each I get an undetectable VL. My t-cells are now in the 800's which almost seems absurd to me. 40 to 800 in only 15 years!!! ;-).

Alas I've got to get Tenofovir out of my combo because of kidney damage.

Old combo: Intelence, Norvir, Prezista, Isentress, Truvada.
Proposed new combo: Intelence, Norvir, Prezista, Isentress, Epivir.

We'll see how it works but wondering if I should be more proactive (as I get older I have started to let docs make more decisions be less feisty).
Any ideas?

Thanks a ton

   ojo   I have a "salvage" treatment wich I started in Juanuary 2007, in aAgust 2006 my doc said to me, that's nothing else I can try (te=reatment), si I was ready to face whatever was coming my way, I had zero cd4...in October, 2006, my doc called me on the phone, "you want to try this meds, they are no approved yet by de FDA", I said ofcourse, so I started this combo in January 2007: PRESISTE/NORVIR, INTELENCE, by march same year cd4 361, VL for the first time sin dx, UD, then he (the doctor) added to my combo ISENTRESS, since then, I've been UD and my cd4 538 (last reading), cd4% 25...so I guess, it is working for me, so I'm sure it will work for you...PN I've been suffering with pain since 1998, and it still getting worse, I have drop toe (big toe) in both feet, and now I noticed the little toe on my left foe has dropped too, I guess has to do with hiv, I just hope don't get drop foot...good luck    ojo

 


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