Quantity vs Quality of life- Anyone actually have an improved life with Meds?

[Papillon_44]

Has your life actually improved with these HIV drugs?  All I read about is how people go through drug after HIV drug to counteract debilitating side effects from other HIV drugs.  I want to know if that is what is called improving your life with HIV medications. 

How has your life been made better? 

People talk about how bringing your VL to undetectable as the goal- but at what cost?  What are the long term effects of these HIV drugs?  Liver problems, Kidney problems, Sleep problems, skin problems, hair loss, neuropathy and dementia?  And you are supposed to take even more drugs to address the side effects which compromise your health even more.  I used to be scared to even take an aspirin. Now I’m stuck with a potentially debilitating and disfiguring HIV medication regimen.

The long term effects of these drugs are just as ruinous as PCP or any of the other opportunistic things that happen with people with AIDS.  It just happens over time instead of sooner.

Is it worth it all to have a quantity of life but no quality? 

[phildinftlaudy]

Simple answer in regards to the title of your post - YES
My life has improved as a result of the meds - and I definitely know that my levels have (viral load undetectable and CD4 moving on up)

[ad2san]

Hi Papillon,

I asked myself the same question .... and I also started the therapy with 40+. The beginning is a very delicate time for some people. I went thru some tough time and adaptation as well. I am managing it but it is hard.
And I remember all my friends dying in the 90's with 22, 27, 31, .... what would they have done to get more time, to avoid the pain ... I miss them so much, every day.

[eric48]

Hi,

Can not give you an answer about long time side effects since I started the meds a month ago ...

Stress, fear, guilt, anguish was driving me insane

I am only at week 5 of my treatment. Week 2 and 3 I had a bit of stomach upset : that is all I have had so far... And now I feels so much better because I know I ave done the RIGHT thing.

Honnest, for me, there was not too much choice nor gain in waiting. With VL at 60 k, CD4 450 but CD4% at 18 %, at 48+ chances to control the virus all by myself were very slim. Moreover, reading the forums and available data, one thing I believe is that the higher up (earlier) you start the better off you go with SE.

I may have suffered more from the fear of Side Effects than the side effects themselves... I keep my fingers crossed, of course.

Read through these pages, some people complain about one combo ... (all those who have no SE are not posting anything, I guess); and then what ? they change combo and in most cases, that's it!

Referring to the answer above, I am soooo happy we are in 2010, that I found out early enough, that damage was moderate . Of course, I would be better of being neg. But being poz and letting this thing inside me, and doing nothing about it ? No thanks!

Better alive and may be in the long range some bad looking SE (lipo...) than virtually dead.

I also have a family to support.... I am not telling them, but, if one day, it leaks out, then I can proudly tell them that I 've done what had to be done. It will make things better for them than just admit the stupid idiot I 'd been , putting myself at risk !!!

Think of the people who love you: they would want you to take these meds ! No ?

your question was: Anyone actually have an improved life with Meds?

Count me as one of those

Cheers

Eric

[mecch]

Yes I felt hollowed out, no energy whatsoever before I started HAART.  So I started and went back to work.  Thats much better, life goes on, more or less the same, with some annoyances, yes, of combos that give me side effects.
¨

[Boze]

I've been on Atripla for about a month and a half. So far no issues to report, feeling a lot more energized.

[eric48]

Hi Papillon,

you have written:
potentially debilitating and disfiguring HIV medication regimen

What have you been offered ?

Moreover (and, please see no offense), speaking of debilitating and disfiguring ... The day you get PCP ...
Worse... after you recover from PCP, the exhaustion, the hospital, the worries... Send us your pic, for every one to see that it is not debilitating and disfiguring... Or better, don't. (please see no offense, here, I am just trying to make a point...)

Take the meds and go on with you life and stay healthy with those who love you

Eric

[Rev. Moon]

Quality of life?  Just fabulous. I feel like a million dollars since I started teh atripla 13 months ago. I don't know where you get that this particular med is going to disfigure you or damage you in any other way.

How is it betta?  More energy, beautiful skin, undetectable amounts of pooper flu virus in my bloodstream.

It is all relative. Some people face temporary side effects, others go through life as if they were popping a jellybean every night.  Guess I'm lucky to be part of the latter group.

[Papillon_44]

Undetectable amounts of pooper flu virus in my bloodstream.

Not sure what u meant by that Rev Moon- (?)

Just FYI- Red blotchiness and hair loss aside- I have had no other side effects.  Been able to run (did my usual 7 miles yesterday) and go to the gym 3- 4 days a week (have a 6 pack).  My worry as far as disfiguring is permanent skin damage and hair loss as a result of the meds and debilitating as in long term serious side effects- liver. kidney damage etc.

Mostly I am curious if others have experienced the same and if so how they handled the problems/side effects.  And if indeed the meds are worth all the trouble.

[newt]

Massively quality has impoved - matt

[mecch]

Mostly I am curious if others have experienced the same and if so how they handled the problems/side effects.  And if indeed the meds are worth all the trouble.

Papillon, you need a reality check. If your numbers said it was time to start HAART - then HAART is worth the trouble.  You seem to be obsessing about side effects that may only be temporary.  You need to chlll out and see the big picture and say THANK YOU THANK YOU that HAART exists.

[Papillon_44]

you need a reality check.

I am fully aware of the goal of of UD viral load- however if the quality of my life is going to be compromised- drawn out over years of medications and medications to combat side effects and medications to combat those side effects (ultimately significantly making my life a nightmare)- why prolong it?  If a long life of health side effects because of the meds I'm taking is supposed to temp me then you have it wrong.  I would rather just die quickly from the inevitable than prolong a life that will be debilitated by med-related conditions/nightmares. 

QUALITY not QUANTITY- got it?

[Hellraiser]

My quality of life was complete shit before the meds.  I was sick and quite literally dying so setting up a dichotomy where quality of life is worse on meds versus the amount of life you may gain by taking them is not just disingenuous but utterly fucking wrong.  I'm alive now and able to work and be happy because of the meds.  The side effects are minimal to almost non-existent and I will never understand the folks who wring their hands about side effects while being seemingly oblivious to the lethal virus coursing through your veins slowly but surely undermining your body's ability to defend itself.  How sick do you have to be before you would consider HAART as an alternative to being miserable while awake or taking any side effect as recourse to being sick?

Sorry if this post is harsh but the title of the thread makes me angry.  Everyone who is hiv+ should give thanks that there are meds that can save your life, let alone do so without affecting how you live.

[newt]

Death from untreated HIV infection is rarely swift and involves much pain, visits to the toilet, disfiguration and medications to treat infections plus medations to counter the side effects of these medications.

Alternatively, it can be swift, which is okay if your affairs are in order and 3 weeks from tommorow is all you need.

Trust me, I seen it happen, lived through it with my friends, the disfiguration, disablement and death, and it ain't nice, usually ain't quick or pretty and certainly ain't quality.

- matt

[newt]

PS - If you's worried about the skin side effects from your combo and they don't subside, change combo. Get sharp with your doc about it. There's no need for this these days when there are many options.

[Hellraiser]

PS - If you's worried about the skin side effects from your combo and they don't subside, change combo. Get sharp with your doc about it. There's no need for this these days when there are many options.

On a side note about this, I had skin issues for probably 4 or 5 months which slowly resolved over time.  They were most likely a form of IRIS so they were an indication that I was getting better.  They were also the product of a functioning immune system not the meds themselves.

[jkinatl2]

I am sorry that youu are forced to take these medications which seem to have changed the quality of your life. I recommend donating them to your local ASO (if they can take them) where they will be distributed to someone who desperately wants that quality of life.

Jonathan
(who has lost too many friends in the last two years to be especially charitable tonight)

[skeebo1969]

How has your life been made better? 

People talk about how bringing your VL to undetectable as the goal- but at what cost?  What are the long term effects of these HIV drugs?  Liver problems, Kidney problems, Sleep problems, skin problems, hair loss, neuropathy and dementia?  And you are supposed to take even more drugs to address the side effects which compromise your health even more.  I used to be scared to even take an aspirin. Now I’m stuck with a potentially debilitating and disfiguring HIV medication regimen.

As far as I can tell, I haven't suffered any of the problems you mentioned above.  And even if I don't realize it sometimes, my life is pretty damn good all things considered.  You ask- How has your life been made better?  Well I guess it all starts with the reconstitution of my immune system, definitely can't leave that important bit out.   This of course led to a domino effect of sorts, you know.. gaining weight, more energy, along with an ability to take a deep breath...  I guess it wasn't all that big of a deal, ya know, starting the meds I mean.

Then some other fucked up shit occurred: met this beautiful, intelligent person who found me attractive enough when I didn't think I was.. told me she wanted to spend the rest of her life with me, I could have avoided the hassle if I hadn't started meds, you understand I'm sure.

Then I had this little baby... well not really, she had it... I just watched with a camera in my hand so I could capture some fucked up memories for later on in life....  of course all this mess could have easily been avoided, fuck you Atripla.

I feel ya brother..  I wouldn't do it if I was you, just look at the mess it's got me in.

[peteb]

Hellraiser
all I can say is AMEN

[WillyWump]

Yes. Ive had improved quality of life with meds. I feel like a million bucks. Energy is great, outlook is great, and I have zero side effects. I thank God Every day for Meds

Good luck
Will

[phildinftlaudy]

As far as I can tell, I haven't suffered any of the problems you mentioned above.  And even if I don't realize it sometimes, my life is pretty damn good all things considered.  You ask- How has your life been made better?  Well I guess it all starts with the reconstitution of my immune system, definitely can't leave that important bit out.   This of course led to a domino effect of sorts, you know.. gaining weight, more energy, along with an ability to take a deep breath...  I guess it wasn't all that big of a deal, ya know, starting the meds I mean.

Then some other fucked up shit occurred: met this beautiful, intelligent person who found me attractive enough when I didn't think I was.. told me she wanted to spend the rest of her life with me, I could have avoided the hassle if I hadn't started meds, you understand I'm sure.

Then I had this little baby... well not really, she had it... I just watched with a camera in my hand so I could capture some fucked up memories for later on in life....  of course all this mess could have easily been avoided, fuck you Atripla.

I feel ya brother..  I wouldn't do it if I was you, just look at the mess it's got me in.

Damn Skeebo - I must be overly emotional these days or that was a just a really really right on target post/response -- I got choked up, tears in my eyes --- there you have it --- the quality of LIFE with every memory that gets imbedded and every experience we get to experience.  Thanks Man - Seriously - 

[Ann]

undetectable amounts of pooper flu virus in my bloodstream.

Not sure what u meant by that Rev Moon- (?)

He meant pooper-flu aka bum-flu aka hiv. Just some of the affectionate nicknames hiv has acquired here. I call it the lurgy.

I would rather just die quickly from the inevitable than prolong a life that will be debilitated by med-related conditions/nightmares. 

QUALITY not QUANTITY- got it?

As Matt explained to you, death from hiv/aids is rarely quick and it certainly isn't painless. It's a pretty fucked-up way to go.

I just started on Atripla (I am calling it Ambrosia*) last Friday (after being HIV positive for 23 years and never having taken meds before).  My VL was at 35K and my CD4 was at 240.

I was absolutely terrified to take the Atripla (code word Ambrosia) because I heard about all of the horrific side effects everyone has been experiencing in some degree or other.

Call me vain, but I am worried about the redness on my face- Rosacea.  I had it mildly for the last 10 years but in the last year or so it has gotten noticeably worse and since taking the Atripla I notice it even more.

As you can see from the chart above from the Rosacea.org website, The second most common trigger is STRESS. As you stated above, you were "absolutely terrified" of starting meds. That's stress, in a big way.

There's a good chance that your stress level due to starting Atripla is what is causing your flare-up, NOT the meds themselves. Sun exposure and hot weather are also in the top three and pretty much all areas of the States are having record-breaking heat-waves.

Pap, I totally get that having skin problems on your face isn't pleasant to live with. I had bad eczema as a child and I used to get it on my face, especially around my mouth. You can imagine what the other kids used to say to me and all during sixth grade my nickname was BJ. It was horrible. So I do empathise with you.

But I think there is a good chance that you're wrong when you assume that Atripla is the culprit in your worsening rosacea. It may be indirectly, because having to take it is what is causing you stress, but I reckon it's ultimately the stress causing the flare-ups.

[tommy246]

i feel great more energy zero side effects more hair better skin bigger hard ons etc

[aztecan]

Hey Papillon,

First, let me reiterate that dying as a result of complications of AIDS is rarely fast, usually quite debilitating and very nasty. That is why quite a number of my friends opted to choose when to die, or had someone else assist them in this.

You say you have been a pozzie for 23 years, I tested positive 25 years ago and my first doc thinks I was infected in 1980, so we are pretty much in the same canoe.

That is why I am surprised you would even entertain the idea that kicking the bucket via teh AIDS was better than living with some of the side effects of the meds, if you get them.

I started meds in 96, using the first line of PIs, beginning with Saquinavir and then switching to the much better Crixivan. You want to talk side effects?

But even with those side effects, I don't regret starting meds, even when I took 22 pills a day. I am still alive, living life to the fullest and plan to continue to do so.

Do I have my complaints, my aches and pains, my "issues"? Yes, but they pale when compared to the horrors I have seen others suffer as their brains rotted, bowels disgorged uncontrollably and they fought for every breath.

I have had some long term side effects, partly from being a pozzie for so long and partly because I, like you, am getting older. That simply goes with the territory.

Personally, I think you waited too long to start meds, but that's just me. There has been quite some discussion in research circles about the effects of HIV itself on the body and the long-term problems it can cause. While there is still much to learn, evidence clearly indicates that keeping the bug under control is better for you in the long run than letting it run rampant.

Regarding the rosacea, among the causes Ann listed as triggering it, aside from exposure to the sun and stress, is strenuous workouts. Since you were stressed, exposing yourself to the sun, (you said you run quite a distance) and doing rather strenuous exercise, it could be a multiple choice answer.

I would corner my doc and ask him/her what you should do to minimize this.

Good luck.

HUGS,

Mark

[Papillon_44]

Hey men- and ladies, I really do appreciate your feedback and stories and sarcasm- all your perspectives are very interesting and helpful...

Perhaps the Rosacea is environmentally exacerbated- I have been spending a lot of time in the sun lately (running, boating etc.), I do spend a lot of time at the gym (but I have been doing that for years), and I have been stressed and worried about taking this medication.

As for the Poz for 23 years- I have been pretty healthy prior to taking the meds (I started 2 weeks ago).  I have never been a drug abuser, smoked, been a heavy drinker and have always exercised and ate healthy.  That and genetics (according to my Dr's) has staved off getting any serious health problems so far.  I was hoping that my CD4#'s would go up and my VL (which has always been low) would go down on my own good work and healthy living.  In the last two years however my CD4's have stayed in the 200-300 level (recent test was 240 CD4, VL35K) and my VL has been going up. 

I am thankful for the 23 years of no health issues but am now faced with health issues if I don't start (and in the case of some HIV medication) health issue side effects if i do.  Win, win or lose, lose?  At the moment I'm trying to figure it all out.  That and looking like shit (with the red blotchy skin on my face and alarming hair loss) has not helped.

I have been brave and proactive so far (23 years!) so i guess i will just have to continue to be so...

~P

[skeebo1969]

   Hey Papillon, I totally understand where you are coming from.  You've endured living with HIV far loner than I have, so the above post was not meant as disrespect to your concerns.  I guess my intent was to perhaps rearrange a focus off of vanity, which I've learned to lose many years ago because I'm growing older.  Whether your current problems are caused by meds or age, either way it sucks.  Another thing you may want to think about- are the problems you're experiencing caused by a low Cd4 count and could they possibly be reversed once your immune system rebounds?  Of course as you know, this recovery depends on you taking the meds.  Food for thought maybe?

  Much respect

[edfu]

How very fortunate you have been to be positive for 23 years without medication and with no health problems--and  you have a 6 pack as well!  You are a very lucky man.  I knew so many back in the 1980s who died within months of presenting with symptoms.  Best wishes on maintaining your health on meds without terrible side effects, as is true for so many on this site.   

[metekrop]

Has your life actually improved with these HIV drugs?  All I read about is how people go through drug after HIV drug to counteract debilitating side effects from other HIV drugs.  I want to know if that is what is called improving your life with HIV medications. 

How has your life been made better? 

People talk about how bringing your VL to undetectable as the goal- but at what cost?  What are the long term effects of these HIV drugs?  Liver problems, Kidney problems, Sleep problems, skin problems, hair loss, neuropathy and dementia?  And you are supposed to take even more drugs to address the side effects which compromise your health even more.  I used to be scared to even take an aspirin. Now I’m stuck with a potentially debilitating and disfiguring HIV medication regimen.

The long term effects of these drugs are just as ruinous as PCP or any of the other opportunistic things that happen with people with AIDS.  It just happens over time instead of sooner.

Is it worth it all to have a quantity of life but no quality? 

This was the type of tinking I had before I come down of a disease due to Hiv infection back in the ende of 2008.  Ohooooo my dear these mads really changed my life for good.  Had it not been for these meds, I would have died.  It is the is issue of living alive and not about hair loss, kidny problem, heart problem bla bla etc.  In fact I don't have any of these problem sofar.  I am back to my regular work and supporting my families and think I will be living the time what God gave me and die accordingly.

[BusyDame]

Papilon

I think its good you expressed yourself and from theresponses to ur post, quality of life is evident for most. Side effects are there but for now, we 've to live with it. I took a test because of a diminishing sight and not responding to the treatment they gave me over a period of six months. I was studying for MBA then and blindness scared me I sought answers somewhere anywhere, even considered learning brail. I have been seeing quite a number of once with sight but now battling with blindness friends and yet still in denial.

Yes my CD4 was at 387 and I didn't have other infections so I ran home to check out my kids before I lost my sight. When at my next check it dropped to 320 I was offered the option to go on the meds so I took it. Apart from a bit of stomach and acne for a year which is now under control my sight is better.

So, let it out.

[debsd222]

Papillon,
Sometimes I think the idea of the meds is much worse than the actual experience. I too worried about all the side effects I had heard about but the truth is I was totally in the toilet, barely able to drag myself around. I didn't have the energy to walk to the corner. I spent a week in the hospital with an allergic reaction to one of the first meds we tried, but I started over with a new cocktail and its been working great for the last 18 months. I don't feel like I'm dying anymore.I don't spend most days in bed. Im back to work. I still have problems here and there but theres no comparison to before I started the meds. So yes, yes, yes my life is much improved with the meds.

[CWD6474]

I have now been on a regimen of Norvir, Prezista, Truvada, Retalgrivir, and Bactrim for the past year. I am really happy to say since I have started this regimen, my viral load is now undectable for the first time in 14+ years of living with this dreaded virus.

I have had MAC (mycobacterium Avium Complex), Shingles, and a few other opportunistic infections, before getting on a steady regimen, and taking them the way that I am supposed to be.

So all in all, yes I truly believe I would be dead if not for the meds.

Before I got MAC, I weighed 205 pounds, got all the way down to 135 pounds while having the MAC, I now have an undectable viral load, and my CD-4's are coming back up, along with my weight. I now weigh 230 pounds, and I feel incredible.

Thanks for listening.

[Papillon_44]

Wow.  I just had my results from lab work after 17 days on Atripla...  (drum roll please)  My VL is down from 35,000 to 315!  OMG!  This stuff is a miracle!  Yes, even though my skin looks redder than usual, the side effects have been non-existent (so far).  Wow.  My VL is lower than it has ever been in 23 years.  Wow...  Don't know what else to say.  Fingers crossed everything else goes smoothly with this drug ; )

 

[WillyWump]

Wow.  I just had my results from lab work after 17 days on Atripla...  (drum roll please)  My VL is down from 35,000 to 315!  OMG!  This stuff is a miracle!  Yes, even though my skin looks redder than usual, the side effects have been non-existent (so far).  Wow.  My VL is lower than it has ever been in 23 years.  Wow...  Don't know what else to say.  Fingers crossed everything else goes smoothly with this drug ; )

 

"Wow."

That's great progress! Congrats! So would you say your life has "improved"?

-Will

[Papillon_44]

Honestly?  The improvement is something I really can't see because it's happening inside of me...  My routines haven't changed- active social life, gym, running, etc.  I even climbed MT ST Helen last weeknd and spent this weekend boating.  My life externally has not changed much.  Internally is another story.  But thrilled just the same.