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Author Topic: people dx'd in last five years and on the "newer" meds , how do you feel?  (Read 5241 times)

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Offline surf18

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  • Posts: 525
do you have any side effects? feel relatively good?
we hear about people on the older meds and the sides but i m curious to what the people on the newer meds feel like five years or so.
thanks!

Offline Assurbanipal

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I think it will depend, in part, on how sick people got before they started.

I feel pretty good; I have some problems with osteoporosis and some cholesterol issues that are probably due to the drugs.  But I started very. very late.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline surf18

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how long from infection to meds do you estimate? and what meds are you on please.thank you

Offline Assurbanipal

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I'm on Prezista/Norvir and Epzicom now.  But I blame the osteoporosis on Truvada (the tenofovir) -- there may be an easy fix though -- more vitamin D and calcium when you start it

I figure the infection dates from late 95 early 96, but who knows maybe later?

Still, for a guy who got infected in his 40's and now is in his 50's -- life is pretty good.

Just remember that you are asking your question of a likely biased sample.  Many people do very well on the meds -- but they may be less likely to hang around the forums than those who have unresolved health problems.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline WillyWump

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  • Fall is in the air!
I'm on Prezista/Norvir and Epzicom now. 

I'm currently on this also, I've been on 3 separate regimens and once my body gets acclimated to them I feel absolutely fine. No complaints other than had minor probs with kidneys due to Tru, but that was managed fine.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline surf18

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thanks guys

Offline bocker3

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  • You gotta enjoy life......
Been on Atripla and Reyataz/Norviir for 5 1/2 years.  I'm feeling fine.  Still doing what I did before infection -- actually playing more tennis and getting better at it too!
Other than dreams, no real side effects from the drugs -- my cholesterol has actually improved, with HDL going up over 10 points alone since starting.  Of course, I've been on statins for at least 15 years.

Mike
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
May2013 691/31% <20

Offline next2u

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there were some minor adjustments in the beginning but im fine for the most part. my only concern is that damn glinting light. apparently im the only one has has this strange condition.

energy levels increased. im a bit moody in the morning and it is a little worse if i've had fattening food close to dosing time. overall no major noticeable side effects.

been on atripla a few months now...its in my tag line.

best,
d
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline mecch

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  • red pill? or blue pill?
do you have any side effects? feel relatively good?
we hear about people on the older meds and the sides but i m curious to what the people on the newer meds feel like five years or so.
thanks!
Infected in Spring 2008, seroconverted, and diagnosed.  Started Haart August 2008.
The first combo - sustiva truvada (Atripla) - immediately made me feel much better, living, energy.  It was a trippy drug for me.  I tripped when I first took it fhe first few days, and I am one of the ones who gets wild dreams.  They weren't nightmares.  After quite a few months, it probably was making me quite irritable and having mood swings. So I was clearly one of the minority with CNS (central nervous system) issues with Atripla.

By the way, that's not such a new combo of drugs.

Then I went on Prezista and norvir.  Yes I got a bit jaundiced.  Finally that gave me a rash.  I went on Intellence and and that gave me a rash finally too after more than a year I thing. And taking that drug coincided with a foot bone/muscle pain problem that couldn't be linked, lasted for almost a year, but went away well after physical therapy didn't do much and right about the time I switched to my newest - Isentress and Truvada.  So that we could call a "new" combo.  It's great. Clean sailing and feeling.  

They are all pretty much cake walks in comparison to the sinking feeling I had before I started and in comparison to the early med horrors.  They are all now quite easy to take.  Its more about fine tuning what works best for you.
« Last Edit: July 29, 2011, 09:20:15 AM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline james3000

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I was OK until until my dose of meds went up since then I have not felt at all well. I do have other conditions so am now taking 17 pills a day so not surprised.
I have noticed weird fat lumps developing around my neck since the increase but will have to see what happens with that.

Offline Miss Philicia

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But I blame the osteoporosis on Truvada (the tenofovir)

IIRC this isn't at all clear, and in fact there have been recent studies blaming it more on advanced HIV infection/low cd4s at diagnosis.
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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  • Taking a forums break, still see PM's
IIRC this isn't at all clear, and in fact there have been recent studies blaming it more on advanced HIV infection/low cd4s at diagnosis.

Well, I've read those studies too.  Most of them cite multiple competing factors including HIV itself, but include tenofovir as one of the siginificant factors. There is an argument that merely starting on meds and becoming healthier diverts resources used for bone building -- but most studies show this is worse with tenofovir (and a recent VA study shows excess problems with kaletra too, which was my other starting drug).

 For me, in particular, the month or so after I got out of the hospital and was starting on meds I fell down more than I ever have before (yes, with an oxygen tube attached).  I fell down a flight of stone steps, off a 10 foot ladder (twice -- the second time I took half a cherry tree with me), walking along the street...  But nothing broke.

6 months after starting the meds though, a relatively minor slip and I had a classic fragility fracture and osteoporosis.  So...I tend to think that the meds were what pushed me over the top.

But back to Surf's question --  I think of this as an example that the number and severity of problems people have are likely related to how sick they got and how old they are.  HIV itself may well have done a lot of the weakening of my bones.  Plus I'll be 55 soon.  So don't take this as a prediction of your own health.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Hellraiser

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  • Semi-misanthropic
I've been on Atripla for 2 years and everything was coming up roses for a while.  However, I'm starting to see some of the more exaggerated anxiety effects attributed to the drug (this may be because I'm working again and so my stress level has risen).

Offline Billy B

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  • Posts: 374
I started on Atripla and went crazy. Switched to Isentress and Truvada and all is great although some of my friends say I am still crazy but in a good way.
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline surf18

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  • Posts: 525
its nice to hear none of you are experiencing lipo and facial wasting that many of our bud's on here had to go through with the older meds.

Offline mecch

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  • red pill? or blue pill?
Is that what you are worried about?  Supposedly the risk is slim but there are reports here and there.

Caveat - you do realise that since "we" are only on the drugs a few years, "long term effects" is not yet an applicable category.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline buginme2

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its nice to hear none of you are experiencing lipo and facial wasting that many of our bud's on here had to go through with the older meds.


There was a recent study that said 50+% of people with HIV in 2010 had some form of lypodystrophy, this was a decrease from a similar study done in the late 90's.

http://www.aidsbeacon.com/news/2011/07/27/rates-of-abnormal-fat-distribution-dropping-but-still-high-in-people-with-hiv-aids-ias-2011/

If that is what your concerned about Mech is right your question is a bit...inadequate.  Your asking people diagnosed in the past 5 years if they have a side effect usually from long term arv use.   Ask us in 10 years I'm sure the answers will be a little different.  Just saying

Offline surf18

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Ugh!

Offline sfpvguy41

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I was diagnosed in 2002 went on meds in 2005, but with Truvada, Reyataz and the Norvir boost, which are considered modern meds.

The goods: undetectable since 6 mos after starting, Cd 4s ok and cd 4% is at an all time high now. No probs sleeping, energy, no lipo problems (except when I eat badly and don't excercise). Nadir was about 350, and never had an HIV related disease except low energy before I went on meds.  The only side effect was sometimes problems with acid stomach, and slightly elevated cholesterol ( not bad).

The bads: diagnosed with osteporosis in feb after 5 years on meds. After a failed try swapping Isentress for the Reyataz (for other reasons), now I successfully switched to Epzicom instead of Truvada. The weak bone thing freaks me out... I have to avoid twisting movements, worry about falling, and I'm taking all sorts of things now to treat it. One thing for sure, no matter your regimen at a minimum supplement with calcium and vitamin D every day it is thought to help fight this problem. My doc now recommends this to all his patients, I wish I knew...
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline mecch

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  • red pill? or blue pill?
I was diagnosed in 2002 went on meds in 2005, but with Truvada, Reyataz and the Norvir boost, which are considered modern meds.


The op asked for input from people dxed within 5 yrs.  

Everyone could do better about being more accurate in defining the categories of the population from which  they are trying to extrapolate info to their own experience.

This post above obviously does not represent the requested sample.


The op could do even better by asking for new infections within 5 years and then on the Haart.

Course one does not want to get too narrow in the criteria - would limit sample size.

Letis all use some common sense and take into consideration more than one little criteria.  Eg, if someone is maybe 10 years poz before the diagnosis - we could guess it's not the same experience.  

Considerations like that.

Or 55 yo people posting their issues and 25 yo people not paying attention and getting worried.   Considerations like that.

« Last Edit: August 03, 2011, 05:44:53 AM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline eric48

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What a boring post... Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline wolfter

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I didn't reply when I first read the criteria but I am wondering why you wouldn't want input from LTS who are also on current meds?  At 45, I suddenly feel better than I have in 20+ years.

Edited to add;

I also look better than I have in 20+ years ;D
« Last Edit: August 03, 2011, 04:19:00 PM by wolfter »
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline buginme2

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My theory is that the OP's intention with this thread was to see how likely it would be to develop lipo issues if you started treatment within the last five years.  Not sure why he just didnt ask that straight away.

Offline Miss Philicia

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Oh, and Miss P's numbers (and not just cd4 stuff) is better than 99% of you "recent five year folks" so you know... like whatevs. ::) :P
« Last Edit: August 03, 2011, 04:12:25 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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What a boring post... Eric

Well, at least it didn't cause you to write a 15 page reply that made no sense -- that's progress!
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Well, I've read those studies too.  Most of them cite multiple competing factors including HIV itself, but include tenofovir as one of the siginificant factors. There is an argument that merely starting on meds and becoming healthier diverts resources used for bone building -- but most studies show this is worse with tenofovir (and a recent VA study shows excess problems with kaletra too, which was my other starting drug).

So basically they don't know, so there's no sense implying that you can blame one med. At least yet.  I've been on viread for a decade and my bones are fine.
"Iíve slept with enough men to know that Iím not gay"

Offline surf18

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Bug-
Lipo was a big thing
But really the whole actual well being I was curious about

Offline sfpvguy41

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My reason for answering here is simple, so maybe someone else can head off the same problems I had up front. I've also heard the "with today's modern meds you'll be fine" and as far as being undedectable that was true. Then you get told about osteoporosis AFTER ONLY 5 YEARS of treatment and guess what? Breaking vertabre and being in constant pain or breaking bones sounds a lot worse than fat distribution(which had concerned me too).

Latest resarch (I don't have time to link now but search aidsmeds on osteoporosis) says that bone loss has been shown to start in the first weeks of treatment! Shouldn't a newbie like the OP know that it is now recommended to take calcium and vitamin D IMMEDIATELY...a simple thing that can help? Also, have your Vitamin D level tested.

Once you lose bone density and get frail, there's controversy about how well you can rebuild it.  So it's best to add this to the list of things all positive people should test for - add DEXA bone density scans and Vitamind D levels to your testing regimen up front, as good HIV docs are doing....but far from all.

Aren't we all about trying to help each other here?
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline buginme2

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The bone loss thing is a big deal I agree.  My Dr hasnt mentioned a word about it to mr either.  Has it been determined how to prevent it? How much vitamin D do you take? 


Offline surf18

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i am on truvada too. my dr told me that i need to take a calcium supplement and vitamin d. i was already taking vit d so that wasnt a big deal and the calcium i take one with the morning pills and one with the night time pills. personally the vitamin d , i take a 5000 iu or however its measured.

Offline Miss Philicia

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I've taken vit. D/calcium twice daily for five years -- my doctor had me do it. My test levels for vitamin D are normal.  And like I stated earlier, I've been on viread (the bone issue component of Truvada) since it was first FDA approved in 2001, so a decade.
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

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I too am on Truvada and not willing to take supplements!  Wouldn't that mean taking a pill everyday for the rest of my life?  OH, wait - never mind. ;D
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline mecch

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  • red pill? or blue pill?
My theory is that the OP's intention with this thread was to see how likely it would be to develop lipo issues if you started treatment within the last five years.  Not sure why he just didnt ask that straight away.

Sure everyone should help and inform each other. Supplements for bones sounds like a good idea for anyone.  My post was just a gentle reminder to newbies looking for input to make sure they take into consideration the exact situation of the person offering input.  Lts and the more experienced can always offer this extra context info by anticipating tha a newbie does not know enough to ask.

Fairly often we get newly diagnosed or newly infected or newly treated people really freaked by the liipo threats.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline surf18

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yes i agree meech ,us newbies are proably most freaked of the lipo issues more than anything.

 


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