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Author Topic: i have been undetectable on same regimen for 11 years BUT  (Read 1828 times)

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Offline eeknyc

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  • Posts: 21
i have been undetectable on same regimen for 11 years BUT
« on: May 05, 2010, 03:59:24 AM »
Amazingly, i have been undetectable on same regimen for 11 years BUT the regimen is Lexiva (formerly Agenerase) Ziagen and Epivir(3TC) -- I would like to switch since the doctors are concerned about heart attack risk with ziagen.

due to anxiety disorder on which my disability is based, sustiva is out and i kinda hate norvir and it's robber-baron company so ideally that's out [but beggars can't be choosers at some point right?]
SO they said Truvada with Lexiva and maybe something else i forgot, it's late...

anyhow the issue is i have had osteopenia close to osteoporosis since 2001 when I was 35yo now I think I am maintaining bone density we shall see with this every other year test....BUT I see Truvada can mess big time with one's bones and I will NEVER take fosamax or fosamax-like drugs...And I have to steer my bones for years without anything other than Jarrow Formula's ULTRA Bone-Up and extra vitamin D3 and swimming

My friends say better to go through hip and knee replacements or god knows what other truvada-related bone problems but it is MUCH less dangerous than what the doctors are saying about ziagen -- in that it takes many onths for the heart danger to go away ! :(
any suggestions? Viread plus lexiva plus...?  Thanks in advance for any inputs! - cb in nyc

Offline aztecan

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  • 28 years positive, 56 years a pain in the butt
Re: i have been undetectable on same regimen for 11 years BUT
« Reply #1 on: May 06, 2010, 02:43:45 AM »
Hey CB,

I was on the same meds for 11 years too! I was on AZT, Epivir and Crixivan. I also was still undetetectable, but switched because of long-term side effects that appeared.

Viread (Tenofovir)  is the drug in Truvada that can cause bone issues, so that probably isn't what you want.

I thought maybe you could combine Emtriva, the other part of Truvada, with the Epivir, but I just read that is a no-no.

What does your doctor say about your concerns with Tenofovir-induced bone problems? Is he/she concerned?

Is the doctor also concerned about the Ziagen and its potential for coronary complications?

It might be possible to try something completely new, although you will still need to take three meds from two classes.

Maybe a combo that includes Isentress, which I take quite successfully, but I take it with Truvada.

Do you have resistance issues?

Gee, I think I asked more questions than I tried to answer. Sorry bout that.

But I am curious what regimen the doctor suggested.

HUGS,

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

Offline randym431

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Re: i have been undetectable on same regimen for 11 years BUT
« Reply #2 on: May 06, 2010, 09:58:12 PM »
My doc just brought this up last week during 4 month checkup. Im on epzicom and that has the ziagen. While Im doing great, the doc acted like I should consider switching off epzicom. And I asked if it were 2005, when I first started meds, would they have put me on epzicom and he said no way. But he is leaving it up to me. Also there is a test they can do to detect heart issues. Can't remember what its called but it only involved a blood test. They have my next labs set to include this test. But the doc said he is not 100% sure it is reliable. It will just add to their data on heart risks. But I guess this guy that invented the test also claims the benefits, so most in the med profession are pretty Leary of this test and if it is actually useful. They put me on epizcom because of past kidney issues, and thought epzicom was better than turvada as a start and kidneys.

Offline eeknyc

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  • Posts: 21
Re: i have been undetectable on same regimen for 11 years BUT
« Reply #3 on: May 08, 2010, 04:04:22 PM »
Thank you both for your replies.

Answers and no need to say you are sorry to me with a good checklist in life! --

Hey CB,

I was on the same meds for 11 years too! I was on AZT, Epivir and Crixivan. I also was still undetetectable, but switched because of long-term side effects that appeared.  ONE DOCTOR TOLD ME AZT IS THE ONLY DRUG TO DATE THAT CROSSES THE BLOOD BRAIN BARRIER I WONDER IF THAT'S TRUE OF ALL DRUGS EVEN IN THE NEAR FUTURE? AND YEAH THOSE DRUGS WERE TOUGH ON MY FRIENDS CRIXIVAN AND STUFF IS WHY I WAITED # YEARS TO START TREATMENT until Agenerase came out

Viread (Tenofovir)  is the drug in Truvada that can cause bone issues, so that probably isn't what you want. ////              DARN seems like I should stick to working regimen and wait for something better but the more i ask the more i hear Ziaagen stories and they ain't good but I think my higher self is telling me to change combination that I am not resistant to anyway as 11 years is a long time to be on a set of drugs every 12 hours. Is this like the "variety is the spice of life" class?

I thought maybe you could combine Emtriva, the other part of Truvada, with the Epivir, but I just read that is a no-no.  HMMM I THINK FAMVIR AND OTHERS ARE IN THAT EPIVIR CLASS BUT I WILL LOOK INTO THEM

What does your doctor say about your concerns with Tenofovir-induced bone problems? Is he/she concerned? NO I AM AND I JUST AM ASKING CAUSE THE ZIAGEN FEAR IS FREAKY

Is the doctor also concerned about the Ziagen and its potential for coronary complications? YES AND SAYS IT WILL TAKE MONTHS AND MONTHS FOR THE HEART ATTACK RISK FROM THAT DRUG TO GO AWAY......

Maybe a combo that includes Isentress I TOUGH I SHOULD SAVE IT FOR LATER AS THEY SAY BUT I MUST CHECK CURRENT DATA AND RESISTANCE PROFILES TO ASSESS

Do you have resistance issues? NO - undetectable from 10/99

But I am curious what regimen the doctor suggested. I EMAILED HIM ON FRIDAY we shall see.. i will ask the other doctors too
 ========================================

Post #2 thank you for reminding me to research the full extent of available the technologies to assess bone beyond bone density mass and hopefully these other tests are not radioactive!
 

I will gladly pay for tests not covered by insurance as it as an important decision

heart assessment? I am afraid I will die on the treadmill aand I am not down with the blue stuff they inject people with who cannot do the stress test where they have you run on the treadmill to see how far the ticker can take it eek
 

Offline eeknyc

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  • Posts: 21
ziagen 2008 Qs
« Reply #4 on: May 12, 2010, 02:43:31 AM »

Offline eeknyc

  • Member
  • Posts: 21
Re: i have been undetectable on same regimen for 11 years BUT
« Reply #5 on: May 12, 2010, 02:59:56 AM »
hmmm british study might suggest ziagen heart risk 'only in 1st year"

http://www.youtube.com/watch?v=2o3_3zEPsP0

Offline eeknyc

  • Member
  • Posts: 21
Re: i have been undetectable on same regimen for 11 years BUT
« Reply #6 on: May 29, 2010, 03:27:58 PM »
ok.
doctor advised that ziagen risk of heart problem data are within <1 year on that since i am 45 and have osteopeonia for 9 years it was of to stay the course versus more data for the viread in truvada messing with bones

cd4 cells t 53% undetectable on same regime 10.75 years
lexiva ziagen 3tc

Have a good weekend everyone

Offline Inchlingblue

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