What is being on meds like?

[boiznuts]

Question for my POZ brothers...

What is being on meds like? I've mostly heard negative things -- are they all true? For example,

• Are they expensive?
  
• (for U.S. readers) Do you think "Obamacare" will reduce the cost of HIV treatment?
  
• Are the side effects really that bad?
  
• Is it true that meds, not HIV/AIDS itself, is what gives you "the look"? Are guys that are strict about taking their meds more likely to have "the look"?
  
• Did you have to experiment with a lot of different meds to find the one you like?
  
• Do you take a cocktail of meds each day, or one pill with various NRTIs in it?
  
• How are the 1990s meds (AZT, etc.) different from what we have now?
  
• Let's say someone doesn't know that you're POZ and asks what all those pill bottles are for - do you lie or tell the truth?
  
• Do you ever take a meds vacation to get your VL higher when you're going to poz up a NEG?
  
• Will meds make me not as horny to recharge and keep spreading The Gift?
  
• I take Xanax every day, and I know that I keep getting tolerant to it and have to take more and more. Does the same thing happen with meds?
  

[fetishpigbottom]

1. They are expensive. But I haven't paid for any of mine yet. The manufacturer hooked me up for 2 years.

2. I'm not real sure yet what effect Obamacare will have on meds. I found out in June I was poz and got on a program and haven't had to pay for meds yet.

3. I'm not having really bad side-effects. Yes, there are vivid dreams, but they don't keep me awake. Other than that no effects (from Stribild)

4. The meds will have some effects on your look. I haven't noticed very many after 6 months. There is one called "fat redistribution" but hasn't showed much on me.

5. You don't have to experiment with too many if you get the treatment properly (a genotype of your blood) pretty much gives the doc a good idea if your resistant to any meds.

6. No cocktail for me. One pill. Once a day.

7. They have made MAJOR advancements since the 90's. Such as the one-pill-a-day method. I was 1.5 million viral load when I started and was at 50 after 2 months.

8. I never lie about my status. I'm up front about it... rather not meet the trick than meet them and they find out or hear "through the grapevine" that I'm poz. Don't want the reputation.

9. I always take my meds.. even on vacation. I'm not much of a top or "gifter" or looking to get "regifted." I'm a barebacker and cumpig.. not really into the pozzing thing or stealth pozzing or converting. But I'll take cum from anyone and give it to anyone who wants it.. neg or poz.

10. Been on meds over 6 months and I'm hornier now than ever. I don't get as picky anymore. I know there are chances to contract other strains, or risks of other STDs that can be problematic now that I'm poz. But I take it raw.. accept the risks and move on.

11. I don't think you become "tolerant" of the meds unless you stop and/or switch meds often. That's why it's important to get on the right on the first time (so I was told). Also I'm on Valium and it helps me sleep so the dreams don't wake me up.

[boiznuts]

Thanks! Do you think the dreams are a side effect of the medication, or a manifestation of fears about your VIRUS becoming more potent and resistant (or both)?

[fetishpigbottom]

Probably the meds.. even after I found out I only briefly had fears.. I just embraced it and moved on. But honestly most of the time I never remember my dreams anyway.. but they can be quite vivid. but nothing intolerable. I wouldn't stop taking them because of it. Like I said.. I am a proud barebacker, but not into the pozzing thing or keeping a high viral load. Not ashamed of being poz.. just not the type to be proud of a high viral load. But I don't judge, to each his own. Let's just fuck and keep it raw!

[bearbandit]

Ultra-vivid dreams are the most prominent side effect of efavirenz, which is a compnonent of atripla. Sometimes the effect can stray over into wakefulness: "free acid!".

The tendency is to put combinations into one pill: atripla contains efavirenz, tenofovir and FTC. The idea is that it's easier to take and you're less likely to skip doses. Most people have little trouble with side effects, maybe a bit of diarrhoea with protease inhibitors, or bloating with tenofovir while your body gets used to what is actually a fairly powerful chemical in your system.

Personally I'm open about HIV, but if I weren't I'd be asking "what the hell gives you the right to go looking through my cupboards?"

"The look" can come from malabsorption syndrome, caused by HIV itself (the gut is one of its favourite places to live), or as a result of the drugs. Lipoatrophy, fat loss in the face, can be treated with artificial fillers, but if you're unlucky to have things go wrong the results aren't pleasant. Lipodystrophy, where fat migrates from the limbs to collect around the internal organs or as a "buffalo hump" is untreatable, though the right exercise regime can help disguise the effects.

The difference between today's drugs and the 90's drugs is that we've a damn sight better idea how to target to HIV and also we've a damn sight better idea of what dosage to be using. almost all drugs in the 90's were way over-prescribed so it's no wonder that those of us who have survived that period on meds have other medical problems as a direct result.

[Guest JizzDumpWI]

Great information. But MODS; I think this belongs more in general discussion with other topics about HIV, side effects, etc.

Thanks guys for posting. It is really helpful to get direct information about our brothers experiences. I for one really appreciate this.

[Guest]

I'm on Atripla...A 3 drug coctail. 1 pill once a day

1. Atripla is expensive...about $1500 per month, however I have great insurance and I pay $10 per month co pay

2. Obamacare should at least make sure every one has access to affordable insurance...Anyone from Massachusettes?

3. I have been extremely lucky...other than the firsr 2 weeks where I felt loopy, the past 4 years have been free from any side effects

4. The older meds like AZT did cause fat redistribution for some people..sunken cheeks, pot belly...the new meds like mine, much less. I've had no probs

5. I started with Atripla in June 2008 and have been on it ever since...no others. At diagnosis my CD4 was 511, Vl 47,000. Within 2 months I was undetectable and have been ever since. CD4 is over 1200.

6. 1 pill...Atipla

7. Current medications are more effective, less side effects

8. I've disclosed my status to very few...

9. Never take a holiday...It would run the risk of resistance.

10. Meds will not make you less horny

11. Atripla may amplify Xanax...Boosted PI's certainly would

[poz0712]

•Are they expensive?- yes they are expensive but I'm not paying them out of pocket. I did the math and the total is about $3,000.

•(for U.S. readers) Do you think "Obamacare" will reduce the cost of HIV treatment?- I'm not really sure how Obamacare will effect me as of yet.

•Are the side effects really that bad?- I have good days and bad days dealing with side effects, the most prominent are diarrhea and dreams.

•Is it true that meds, not HIV/AIDS itself, is what gives you "the look"? Are guys that are strict about taking their meds more likely to have "the look"?- I don't have the look.

•Did you have to experiment with a lot of different meds to find the one you like?- I'm on my first cocktail of meds.

•Do you take a cocktail of meds each day, or one pill with various NRTIs in it?- I'm on a cocktail of meds.

•How are the 1990s meds (AZT, etc.) different from what we have now?- More drugs are available now then in the 90s.

•Let's say someone doesn't know that you're POZ and asks what all those pill bottles are for - do you lie or tell the truth?- I tell the truth.

•Do you ever take a meds vacation to get your VL higher when you're going to poz up a NEG?- I don't take a med vacation to poz someone. I don't want to poz anyone.

•Will meds make me not as horny to recharge and keep spreading The Gift?- My perspective has change about sex because that means I will have to tell them I'm positive.

•I take Xanax every day, and I know that I keep getting tolerant to it and have to take more and more. Does the same thing happen with meds?- I'm not on Xanax but I'm on another psyche med along with my HIV meds.

[PhoenixGeoff]

• Are they expensive?
  Yes, very. But in most cases, either private insurance or some government program reduces the cost to that similar to other drugs. The VA charges me $9 per prescription per month.
  
• (for U.S. readers) Do you think "Obamacare" will reduce the cost of HIV treatment?
  Not directly. For those who lack private insurance, government programs generally pick up the tab of HIV treatment (unless you've got enough income to pay for it yourself).
  The one area Obamacare might help is for people who pay for their own currently insurance out of pocket. Currently, these people are in a risk pool of 1. Because HIV treatment is so expensive, insurance companies charge a huge amount to cover them in monthly premiums. The people in the worst situation are small business owners, who often make too much to qualify for government programs, but don't make enough to be able to afford the premiums.
  Obamacare should help them out in three ways: First, health insurance companies can no longer charge extra or turn you down based on "preexisting conditions" like HIV. Second, people buying insurance on the open market (rather than through an employer) will be able to shop on state-run "exchanges" where they will be placed into a risk pool with everyone else in their state. And third, the government will now provide subsidies for health insurance premiums that will phase out at relatively high levels of income. Also, most states will expand Medicaid coverage to cover more people.
  But the main driver of the expense of treating HIV is the cost of the medications. And since most of the meds are pretty new, they're still patented. Which means the owners can and do charge an arm and a leg. The good news is that the patents on many of the most commonly prescribed meds are now expiring, or will in the next few years. That should bring costs down enormously as generics become available.
  
• Are the side effects really that bad?
  It varies considerably. Many people, like myself, only have minimal (or even no) side effects. On the other hand, I've known people who have gone through hell.
  In general, what the doctor will do when you're ready to start meds is put you on one of the front line treatments. This will be something most people tolerate pretty well and that you only have to take once a day. Then you'll see how it goes. Your doctor will want to ensure your numbers are shaping up well (CD4 count rising, Viral load falling to undetectable). And you'll be asked about side effects. If the side effects are bad, you'll switch out some drugs for others that hopefully will affect you less. The goal is to find an effective cocktail that's easy to take and has minimal side effects.
  Please be absolutely honest with your doctor about side effects. Don't try to "tough it out". I made that mistake early in my treatment. I was on Viracept and was having terrible GI problems...diarrhea, permanent low-grade nausea, etc. But I figured I could take it and failed to report the problems as fully as I should. After a time, I found myself becoming depressed. I missed doses. And eventually, it turned out that my virus became resistant to two of the drugs I was on. You don't want that to happen because it can severely limit your options for treatment.
  On the other hand, understand that any side effects you do have often will recede with a little time. That was my experience with Sustiva. At first it fucked with my head terribly. And if I even looked at an alcoholic drink, I go loopy. But with the passage of time, those effects receded. Now I only rarely get a very mild "unfocused" feeling after I take it.
  
• Is it true that meds, not HIV/AIDS itself, is what gives you "the look"? Are guys that are strict about taking their meds more likely to have "the look"?
  You're talking about lipodystrophy, which basically means that your body fat moves to odd places, leaving you with less in some places (like your face) and more in others (like your gut or the "buffalo hump").
  We're not quite sure which is causing it or why it happens or why it's more severe with some people than others. I'd personally consider it a long term effect of living with HIV. Since the guys who are strict about taking their meds are the ones who actually live longer, it's hard to answer your last question too.
  
• Did you have to experiment with a lot of different meds to find the one you like?
  When I was diagnosed, I was a college student with student insurance. They covered the doctor visits and tests, but not the drugs. The doctor at the student health center referred me to a group that was conducting pharmaceutical trials in order to help me get meds for free. They were testing ways to reduce the side effects of Viracept, which is pretty notorious for its side effects (see what I wrote above). Long story short, I tried to tough it out as long as I could (I didn't want to get kicked out of the study and lose my free meds) and ended up becoming resistant to two of the drugs I was on.
  After that, I was referred to the VA (where I should have gone to begin with), where they place me on my current regimen. With only one minor change, I've stuck with that for about the last ten years.
  
• Do you take a cocktail of meds each day, or one pill with various NRTIs in it?
  I currently take three pill once a day, all at the same time. One of those three is a two-medication combination, so I'm actually on four meds.
  "NRTI", by the way, refers to a specific class of HIV meds (Nucleoside Reverse Transcriptase Inhibitors). This class of drugs prevents the HIV virus from using a particular protein (reverse transcriptase) from copying the viral RNA into the DNA in your CD4 cells and thus hijacking the cell into producing more and more copies of the viral RNA.
  This is only one strategy out there for stopping the virus from reproducing. There are a couple other methods that attack the reverse transcriptase protein (NNRTIs and NtRTIs). Others attack other proteins used at other points in the process (protease inhibitors or PI, integrase inhibitors, etc.) or attack other points in the life cycle (e.g. fusion inhibitors).
  In general, the three meds in your cocktail will attack the virus in three different ways. So if you're on Atripla, you're taking an NRTI, NNRTI and an NtRTI. Most of the time, if your virus becomes resistant to a particular med, it will also be resistant to all other medications in the same class. The reason why we have multiple drugs in the same class is that the side effect profile will vary from drug to drug, so if, for instance, you're having trouble with Sustiva, you might be put on a different NNRTI.
  If you're interested, there's a description of the HIV lifecycle here.
  
• How are the 1990s meds (AZT, etc.) different from what we have now?
  When AZT first came out, we didn't understand just how easily HIV mutated in response to medications. So while it did a good job of stopping HIV in the lab, when tested on people, it worked briefly, and then stopped as the virus gained immunity.
  At first, too, we weren't sure how much drug was needed to be effective. So early on, patients were given extremely high doses, with correspondingly horrific side effects.
  As we've worked out the cocktail strategy (three meds is generally the magic number required to keep HIV in check), we've also radically reduced the dose prescribed as we've learned what's effective.
  AZT is, in fact, still routinely prescribed today as part of a cocktail. And at the doses currently used, it's generally well tolerated. And as a bonus, it's one of the few HIV meds that is currently available as a generic in the US.
  
• Let's say someone doesn't know that you're POZ and asks what all those pill bottles are for - do you lie or tell the truth?
  I always disclose to men that I feel there's even a remote chance of sex with, bareback or safe.
  Other than that, no-one's ever asked, so it hasn't come up. Outside of health professionals, only a handful of people know I'm HIV+, mostly family members and close friends.
  
• Do you ever take a meds vacation to get your VL higher when you're going to poz up a NEG?
  No. But I'm not a "gift giver". The idea of infecting someone else does nothing for me. I don't object to fucking neg guys who know my status (on the assumption that they're probably taking loads from other poz guys as well). But I won't go out of my way to spread the virus.
  Meds vacations was an idea that was floated about ten years ago where we thought that men who'd kept the virus in check for a while might be able to go off the meds for a bit, especially if the side effects were bothering them. We'd assumed that since HIV usually progresses pretty slowly, that they'd basically be starting from scratch and might potentially be able to stay off meds for a few years before needing to bring the VL back down.
  What we found is that if you go off meds, the virus rebounds pretty rapidly. Considering that vacations also offer a chance for it to become resistant, you'll find that doctors don't recommend them at all any more.
  
• Will meds make me not as horny to recharge and keep spreading The Gift?
  Possibly. Some of the meds have been known to have sexual side effects. If that's a problem, talk to your doctor about alternative treatments. Or just live with it. I know it's kind of a heresy around here, but there is more to life than just sex.
  
• I take Xanax every day, and I know that I keep getting tolerant to it and have to take more and more. Does the same thing happen with meds?
  No. Basically, the meds simply block the virus from reproducing. As long as you stick to the cocktail, they can work indefinitely. I've been on mine for the last ten years.
  That being said, if given a chance, the virus can become resistant to one or more of the meds you're on. This is usually caused by missing doses, but can in rare cases happen spontaneously.
  We've got a ton of different strategies for handling that situation now, with all of the classes of medications out there. Your doctor will adjust your cocktail and life will go on. That being said, once you find a cocktail that works for you, do your absolute level best to stick to it 100%. Many of the medications that are used as fallbacks have more serious problems, more difficult side effects, need to be taken multiple times a day, under special conditions. Some are injections rather than pills. If you have a set of meds that are working, only need to be taken once a day, and have few or no side effects, you do not want to lose that.
  

[Guest]

Take one pill in the morning and go lift weights. Go about my day. 

[Guest]

My personal experience of seven years of drugs:

No side effect at all. Or at least nothing remarkable that annoyed me. I didn't have to try several drugs to find the right one. It was immediately fine. 

[Guest]

1) yes it’s expensive however most people pay little to nothing. I have insurance and my copay is covered by coupon plan provided by the pharmaceutical. Most people pay very little out of pocket and whatever you have to pay can be covered by coupon plan or your country/state has a plan. 
 

2) I don’t have obama care but I have friends who do and they are in the same boat as me; they pay little to nothing. I have a friend who is on Obama care and his out of pocket is only $15

3) I have not experienced any side effects & the drugs today aren’t as as harsh as they used to be

4) The poz look came from the drugs of the 80s and 90s like AZT. It’s not a side effect on today’s meds. lipodystrophy is a thing of the past 

5&6) when I tested poz in early 2000s I took 2 meds and a year later my new doctor took me down to 1 a day

7) AZT is a thing of the past. I don’t even think it’s manufactured anymore. The drugs today are not as harsh on your body as they used to be, especially your liver 

8. never that issue 

9 and 10) both are stupid questions so not wasting time answering nonsense however you should never go off your meds

11) no your dosage doesn’t go up due to tolerance 

 

[funpozbottom]

On 3/6/2013 at 11:09 AM, boiznuts said:

Question for my POZ brothers...

What is being on meds like? I've mostly heard negative things -- are they all true? For example,

It's been 10 years since this question was first posted. Might be interesting to see how current answers compare to those of a decade ago. Here are mine:

1. Are they expensive?  I guess that's a relative question. If you are on the Forbes 500 wealthiest list, then paying the $4,000 a month retail cost would be peanuts for you. On the other hand, that amount could be twice a normal worker's take home pay. Personally, I think meds are expensive.

2. (for U.S. readers) Do you think "Obamacare" will reduce the cost of HIV treatment?  The Affordable Care Act (AKA Obamacare) was extremely helpful for me -- at least in the beginning. Insurance companies are now finding ways to shift more costs onto the consumer by doing things like reclassifying HIV meds as "Specialty" tier which lets them charge a higher co-pay.  I turned 65 last year so I am now on Medicare and find it is worse than the ACA in terms of coverage. (FYI: if you have coverage through the ACA, you cannot keep it once you turn 65. You must cancel your ACA plan and join Medicare.)  In my area, all drug plans have large deductibles which means my copay is over $1,000 a month for the first 2 months of the year. If you qualify, Ryan White will cover that copay, but going back to question one, Yes , meds are still expensive.

3. Are the side effects really that bad?  Modern drugs are pretty good in terms of minimizing side effects. Liver and kidney functions are still closely monitored, but over all, side effects are usually minimal.  (Side note: when I was on Atripla I had very vivid dreams and I really miss that now that I'm on Biktarvy.  My Atripla dreams were hilarious.) 

4. Is it true that meds, not HIV/AIDS itself, is what gives you "the look"? Are guys that are strict about taking their meds more likely to have "the look"?   Yes, it was the early med that caused fat redistribution in some people. Newer meds are less likely to cause that, however it is a side effect that is still studied.

5. Did you have to experiment with a lot of different meds to find the one you like?  Early on, my doctor tried to change my med to try to increase my CD4 count faster, but I didn't like it and went back to Atripla.  A year or two ago I was switched to Biktarvy since it is less toxic to the kidneys.

6. Do you take a cocktail of meds each day, or one pill with various NRTIs in it?  Calling it a "cocktail" makes it sound so delicious. But no, I take one pill, with 3 active ingredients, once a day.

7. How are the 1990s meds (AZT, etc.) different from what we have now?  I was never on AZT so I have no personal experience to compare.  From what I've read, I'd say the newer classes of drugs are better at suppressing the virus while being less toxic to the individual.

8. Let's say someone doesn't know that you're POZ and asks what all those pill bottles are for - do you lie or tell the truth?  First of all, why are you letting people root through your medicine cabinet? Second, there's only on med bottle, and three, I'm not hiding my status, but seriously, stay out of my medicine cabinet.

9. Do you ever take a meds vacation to get your VL higher when you're going to poz up a NEG?  This may have been a thing 30 - 40 years ago, but I think most people today actually want to take care of themselves and avoid creating more victims by passing along an incurable illness. It took me years to attain an undetectable status. I'm not going to intentionally fuck that up.

10. Will meds make me not as horny to recharge and keep spreading The Gift?  If that's your idea of a gift, please stay away from my birthday party.

11. I take Xanax every day, and I know that I keep getting tolerant to it and have to take more and more. Does the same thing happen with meds?  No. Unless there is a mutation in the virus that makes it resistant, your dose would stay the same.  If the virus is resistant, you'd be switched to a different med.

[Tanbbottom]

On 3/6/2013 at 11:09 AM, boiznuts said:

Question for my POZ brothers...

What is being on meds like? I've mostly heard negative things -- are they all true? For example,

 

• Are they expensive?
• I'm Canadian. Until I retired they cost me about $4000 per year. Public and personal health insurance picked up the other about $20000 per year. 
• (for U.S. readers) Do you think "Obamacare" will reduce the cost of HIV treatment?
• Are the side effects really that bad?
• I'm on my second regime of pills. I'm a lucky one who feels no side effects. I was switched to current med because my liver counts were starting to trend in a concerning direction. I felt no adverse side effects. I know I'm lucky, this is not everyone's experience. 
• Is it true that meds, not HIV/AIDS itself, is what gives you "the look"? Are guys that are strict about taking their meds more likely to have "the look"?
• This was true in the past with AZT. It went out of favor before I went on meds about twenty years ago. None of my meds give me the waisting look. If I didn't share my status no one would know. 
• Did you have to experiment with a lot of different meds to find the one you like?
• I haven't needed to.
• Do you take a cocktail of meds each day, or one pill with various NRTIs in it? 
• I started with a 3 pill cocktail and now have one pill. Genvoya. I take it 'religiously' with breakfast and have been undetectable for over 20 years. 
• How are the 1990s meds (AZT, etc.) different from what we have now?
• See above. 
• Let's say someone doesn't know that you're POZ and asks what all those pill bottles are for - do you lie or tell the truth?
• I used to hide my meds. Especially when traveling and having Breakfast with others. As I've come out about my status I don't give it a thought. Besides at my age most people take far more medications than I do. 
• Do you ever take a meds vacation to get your VL higher when you're going to poz up a NEG?
• Never. My long-term health is too important to me. 
• Will meds make me not as horny to recharge and keep spreading The Gift?
• They don't reduce my libido at all. 
• I take Xanax every day, and I know that I keep getting tolerant to it and have to take more and more. Does the same thing happen with meds?
• Not my experience at all. As for my antidepressant I only need it through the winter. Good psychotherapy has gone a long way to reduce my dependence on a drug.

This is my experience. I hope it helps. 

 

 

[Tanbbottom]

Now my meds are all paid for by public health insurance. A happy reality for my bank account  ... lol