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Author Topic: I sometimes think I'm missing out on important information  (Read 1750 times)

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Offline CalvinC

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I sometimes think I'm missing out on important information
« on: January 03, 2022, 12:35:38 am »
Hi all and best of the new year.

I was out New Year's eve with an ex, a doctor, and a friend of his. Pleasant time. Neither knows that I'm poz (since 2006) and I'm not interested in telling them. (Edit: Ex is from 90s, safe sex, he's tested neg many times, he tells me.)

At one point, they digressed into stories about (their) sexual escapades and PrEP, and sex without a condom, and so on. (I didn't say much, as I'm not having sex, and that's okay, and I'm much more circumspect anyway.) They talked about people sero-converting and the medicine these people have to take and how HAART is "heavy duty drugs" and "there are so many side-effects like diarrhea" etc etc.

I'm sitting there thinking that, for me (who is on HAART, since 2013), none of these things apply. My HIV journey has been (aside from my feeling sad sometimes about romantic isolation) virtually seamless. I seroconverted unknowingly, my one-pill-a-day (Genvoya) had/has zero side effects, I'm very fit and otherwise healthy. Sure, I have run-of-the-mill life problems, but things are pretty good, HIV-wise. (I live in Canada, so medicine/cost is not an issue at all.)

All this to say: should I be looking for information that I've missed, that might disabuse me of my good fortune (so to speak)? I don't often think of HIV, at all, because I don't have to (expect when it comes to dating and the like). I don't think of my Genvoya as "toxic" or "heavy duty" since it's doing its work and I don't feel it.

I don't want to sound naive, but sometimes I wonder if I'm just blissfully ignorant and need to wake up.

Thanks,

Cal
« Last Edit: January 03, 2022, 12:37:48 am by CalvinC »

Offline Jim Allen

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Re: I sometimes think I'm missing out on important information
« Reply #1 on: January 03, 2022, 01:02:28 am »
Hiya,

Genvoya by the sound of it is working out fine for you, happy days and I am presuming you are getting regular lab work done to monitor that everything is going well so...

Now I know Genvoya wouldn't be my cup of tea but I don't think you have missed out on any information. You can look up potential side effects but I am not sure how useful that would be.

More generally speaking any treatment combination can have side effects though it doesn't mean everyone will experience them, if a combination doesn't work or suit someone then they can look into switching treatment if needed.

Jim
« Last Edit: January 03, 2022, 01:14:49 am by Jim Allen »
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Offline CalvinC

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Re: I sometimes think I'm missing out on important information
« Reply #2 on: January 04, 2022, 10:16:12 pm »
Thanks, Jim.

It's odd -- I see ads here for different meds and I think "Why? Isn't it your doctor who makes those decisions?" Mine did and I never asked.

Yes, getting regular bloodwork etc. Nothing unusual (so far).

I was just worried that I should know more, and perhaps I should. Yet at the same time, I rest easy knowing that I have excellent medical care.

Offline Jim Allen

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Re: I sometimes think I'm missing out on important information
« Reply #3 on: January 05, 2022, 04:38:59 am »
Sure np.

Genvoya is essentially the updated version of Stribild. You were part of the trial for it right? Anyhow the update was they replaced Tenofovir disoproxil fumarate (TDF) in the combination with Tenofovir alafenamide (TAF).

I think since then the biggest general developments would be two-drug treatment options and injectables and there is nothing wrong with knowing what treatment options are available, we should be in the driving seat of our care with assistance/guidance from our doctors.

That said what is advertised or new is not always better and it depends on peoples needs, what other meds they take etc. 

Prehaps talk to your doctors next time you see them and get their opinion on your current treatment and the pros/cons of newer treatment options.

Personally, I know there are other options available, but unless there was a problem or clear reason for a switch I would not dream of changing my current meds. 

https://www.poz.com/drug_charts/hiv-medications
« Last Edit: January 05, 2022, 04:42:14 am by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline leatherman

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Re: I sometimes think I'm missing out on important information
« Reply #4 on: January 05, 2022, 03:54:59 pm »
almost 60, and over 25 yrs poz, one of the things that I've learned from all my HIV advocacy work is that people don't know about diseases they (or their family) don't have. There's nothing wrong with that (well, not much except it often means they spout off bullsh!t about some medical issue) because why should people know about health issues that don't concern them? Personally, I don't know anything about diabetes, for example, because no one I know has that issue. I understand about insulin and it's cost because that's in the news a lot; but nothing about having the issue or what to do about it.

"HAART is heavy duty drugs" and "many side-effects like diarrhea" are comments from people who don't really know anything about HIV treatment. While HAART might be considered "heavy duty" (because they are serious meds for a serious health issue), the meds post-2005 are nothing like the meds pre-2005. Side effects? One of the best things of nearly 30 yrs of HIV meds is that many if not most negative side effects of HAART have been worked out of the meds. But if you don't have HIV, or your immediate family member doesn't, or you're not an HIV doctor why would you know that? While being older and living through the early or mid years of the epidemic might make some people think HIV treatment is still "heavy duty", you would like to think that all the drug ads of happy people living their best lives might change some minds......but often people still think of HIV and it's treatment like it's still 1995.

You're not naive nor blissfully ignorant, you simply are more educated about the subject. Interestingly your post made me realize something important about my own treatment. While for me the first 15 yrs of living with HIV was terrible (I was really sick, the meds really sucked...well except for the "keeping me alive" part, and those were hard years), I just realized that I've been side effect free and healthy for 20 yrs now! Wow! So while I've had HIV a lot longer than half my life, now for more than half the time I've been taking meds it's been almost like living without HIV. w00t!

It's odd -- I see ads here for different meds and I think "Why? Isn't it your doctor who makes those decisions?" Mine did and I never asked.
if you're living in America, you're seeing ads because we have a screwed up health care system. Pharma companies make so many bucket-loads of cash, they can spend millions to advertise....all in an effort to make more money.

For the life of me, i don't understand it, especially for HIV meds. What kind of doctor is simply going to say "sure" and write up a prescription without any consideration when a patient comes in and asks to be switched to something they saw on TV. Shouldn't this hypothetical doctor have already have suggested a change and which medication if a change was needed? Shouldn't this doctor suggest a new medication if it's been shown to be more effective than what the patient is already taking? Just how do the pharma companies expand their market by just advertising? (I'm thinking about the endless tv ads for Bictarvy and Cabenuva)
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline CalvinC

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Re: I sometimes think I'm missing out on important information
« Reply #5 on: January 08, 2022, 01:11:22 pm »
Jim, yes. When my GP said I should start meds, my specialist did a genome (I'm sure) and put me on the Genvoya trial. I was either on the old Genvoya or the new one; and after two years, once they unblinded the test, I discovered that I had been on the new one all along. So, happy days.

I did ask my specialist about the needle, and it was her advice to wait another year or two after "all the kinks have been worked out." So I said sure.

Leatherman, thanks for your story. Always heartening and interesting to hear of other people's histories. Here in Canada, there is the odd billboard or two in Toronto's village that is advertising a new med, with "talk to your doctor." I don't think we get hiv ads on TV here (but I'm not sure as I don't watch TV, generally).

The only bump I've hit in my treatment is with my GP. My former GP, now retired, was on the front lines of hiv/aids and it was he who said I should also see a specialist, who, also now retired, was THE hiv/aids doctor in the country. I still go to the specialist's hospital to get my bloodwork done -- they have a large hiv-related concerns unit -- and my new GP has subtly questioned this, and I'm not sure why. It's way out of my way to go to that hospital, but they are all such lovely people. Anyway, I just ignore the subtle digs and move on.

Offline leatherman

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Re: I sometimes think I'm missing out on important information
« Reply #6 on: January 16, 2022, 02:08:18 pm »
why should people know about health issues that don't concern them? Personally, I don't know anything about diabetes, for example, because no one I know has that issue. I understand about insulin and it's cost because that's in the news a lot; but nothing about having the issue or what to do about it.
Ugh. I should have knocked on wood when I said i didn't know anything about diabetes. Guess who's learning all about it now? yep, me. But not for me, so that's good. Unfortunately following the latest trip to the Doctor's this week, there was getting the results after the vampires (see jims thread) had their way (though I must say, the new phlebotomist was a lovely lady who we happily discovered has the same love of Coke as I do....and drinks the same amount daily. LOL but that's a topic somewhere in yet another thread LOL)

Anywho, my labs were fine (hehehe thank goodness my cd4s dropped. anything over 500 seems odd for me, so the 700-something last time was freaking me out. It's back down to 542, which still seems too high; but I'm trying to be happy about it. LOL) but my hubby's labs weren't so good. Seems he gets to have a diabetes diagnosis now. So I'm learning all about it, especially since I'm the one who cooks in our house....not to mention the whole "trying not to be widowed at the end of 10 yrs" for a third time. I've got to keep him alive at least another 5 yrs to reach that point, so I'm learning about diabetes for him. I give myself points for already getting him into the gym about 2 months ago; now I've got to learn how to fix our diet up.

Fortunately, this means I'm the lucky one to eat up all the candy, chips, desserts, carbohydrates and sugars lying around the house. Lord, if it was me with diabetes and having to cut sugars and potatoes (you say carbs, I say yummy yummy potatoes), I'd just give up and die. I frequently mention how my genetics are like my 104 yr old Nana, and up until her death, she and I often shared our fondness for chips, Coke and candy when I visited her. If those things kept her going for all those years, I'm expecting the same thing! (Sorry Larry honey.  :-* but I'll graciously take up this burden and eat up all your candy to save you! that's how much I love you.)
leatherman (aka mIkIE)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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