Author Topic: Impact of HIV medication (Read 13700 times)

pinkadam · « **on:** April 10, 2015, 12:50:36 am »

Hi guys

Iam trying to understand how HIV meds impact us mentally. I been on meds for 8 years. Ever since iam on meds my memory power went down but my doctor thinks it is age related. Iam 45 and sometimes i very forgetful and it started impacting my work too. Also iam prone to depression alot. Especially in winter.

Love to hear from you guys on your experiences

thx
Tony

justinmiller46 · « **Reply #1 on:** April 10, 2015, 11:54:31 pm »

Hey Tony,

I been on meds since early 2005. I haven't really notice a lot of memory "loss" really. I think everyone gets depressed during winter time. Maybe taking a vitamin d will help, i think that what my doc recommended me.

Joe

AT · « **Reply #2 on:** April 11, 2015, 02:00:41 am »

Both are possible long term side effects of many HIV medications. Talk to your doctor, again. If you're doubtful about your doc's opinion then become your own expert. Start documenting episodes of both issues. Seek out a second opinion from a specialist. For depression work with a therapist when episodes begin. Be proactive in your healthcare.

BT65 · « **Reply #3 on:** April 13, 2015, 09:20:18 am »

Tony, I noticed you are on Atripla, and that can effect mood quite significantly. In fact, many people switch to another regimen due to CNS (central nervous system) side effects.

I would encourage you to talk to your doctor about the depression, Atripla, and perhaps switching to something else so you can get your depression under control. Of course, this is my opinion (actually, a lot of opinions, http://www.poz.com/rssredir/articles/treatment_guidelines_Atripla_761_27065.shtml), and you can take it as you will.

Betty

zach · « **Reply #4 on:** April 13, 2015, 09:33:22 am »

Tony, I would strongly encourage you to do some research on Atripla, specifically the Sustiva (Efavirenz) component. If you have ever had a history of depression, mental illness, etc no matter how insignificant, I would do a lot more than just research.

Atripla has been shown to cause CNS side effects in the way you describe, and to heighten preexisting conditions of same.

For me, it got to the point that I had to experience it myself, then educate myself, and eventually advocate for myself. Now I simply refused to take any medication with Sustiva as a component and demanded options.

We don't have to passively accept side-effects, no matter how small they are.

BT65 · « **Reply #5 on:** April 13, 2015, 09:54:16 am »

Tony, please note the study Zach linked to is the same one I did. Thanks.

Betty

zach · « **Reply #6 on:** April 13, 2015, 10:01:24 am »

my bad... was that there when i began writing my post? i see your post was edited

regardless, i modified and removed... long as the information is out there, i have no skin in being the one to disseminate it

BT65 · « **Reply #7 on:** April 13, 2015, 10:02:18 am »

It was there long before you posted, dear. But thanks for your effort, we appreciate it.

Betty

mecch · « **Reply #8 on:** April 13, 2015, 01:20:06 pm »

Quote from: AT on April 11, 2015, 02:00:41 am

Both are possible long term side effects of many HIV medications. Talk to your doctor, again. If you're doubtful about your doc's opinion then become your own expert. Start documenting episodes of both issues. Seek out a second opinion from a specialist. For depression work with a therapist when episodes begin. Be proactive in your healthcare.

Gee I am not really an expert in HIV medication. I'm not sure "many" HIV medications have long term side effects of depression and memory loss. Not these days? Or in countries with the latest meds.

Sustiva: OK, bad!

I thought I read, that causes of depression and memory loss, for people on anti-virals a long time, could be related to:

age

stressors and challenges of living with HIV

continued HIV replication in certain tissues or body areas

So, if true, none of that is the medicine, it's the hiv and life with hiv.

But as I said - no expert, so doc should be able to sleuth for the causes in a particular person.

phenethylamine · « **Reply #9 on:** April 23, 2015, 10:06:59 pm »

The Effavirenz (Sustiva) part of Atripla is believed to be a Dopamine re-uptake inhibitor (Similar to Methylphenidate, Ritalin) also a VMAT inhibitor similar to Amphetamine... Dopamine is the wakefulness, concentration chemical.
My theory is that by taking it at night...

1) you can't sleep well cause the dopamine wakes you up...
2) If you do sleep, you might wake up with acute drug withdrawal essentially..
3) in the long term, you build a tolerance to dopamine and your receptors desensitize.

Yet if you do take take it in the morning, it supposedly binds to 5ht2a (psychedelic serotonin receptor) not very functional. So its sort of a catch 22.

Apparently it also binds to Serotonin 5ht2c (decreases release of dopamine, norepinephrine) this is supposedly alleviated by an antagonist like cyproheptadine (antihistamine). Maybe ask doctor to try this at night... I'd be really curious if it helps...

Finally, if you do decide, are able to switch meds... I suspect a "withdrawal" might be possible... you might feel worse before you feel better as your brain recalibrates. Don't mistake that for the effects of new meds.

Jeff G · « **Reply #10 on:** April 24, 2015, 08:49:43 am »

Quote from: phenethylamine on April 23, 2015, 10:06:59 pm

1) you can't sleep well cause the dopamine wakes you up...
2) If you do sleep, you might wake up with acute drug withdrawal essentially..
3) in the long term, you build a tolerance to dopamine and your receptors desensitize.

Finally, if you do decide, are able to switch meds... I suspect a "withdrawal" might be possible... you might feel worse before you feel better as your brain recalibrates. Don't mistake that for the effects of new meds.

This is simply not true ... people who take Atripla do not suffer withdrawal and we would not want people to think that is the case and become alarmed by your statements .
You posted in another thread about your med anxiety and concerns about mental health and HIV meds, we can help you address those fears but we want to make sure that in doing so we don't cause others anxiety by posting wrong or inaccurate information .

phenethylamine · « **Reply #11 on:** April 24, 2015, 05:43:32 pm »

K sorry, I did say that was just my personal theory so don't take my words as fact.
Also, I didn't mean physical withdrawal from the drug itself, but "tolerance" that develops from the brain "adjusting" to these effects and then "adjusting back" when discontinued.

My second possible explanation... the metabolite "8-hydroxy-efavirenz" theory.
It's basically not the drug, but what it turns into.

The original poster wanted to "understand" how mental decline is possible,
Not be told that it doesn't exist... The issue has to be acknowledged, and understood before it can be rectified or treated...

Joe K · « **Reply #12 on:** April 24, 2015, 07:56:43 pm »

Quote from: phenethylamine on April 23, 2015, 10:06:59 pm

The Effavirenz (Sustiva) part of Atripla is believed to be a Dopamine re-uptake inhibitor (Similar to Methylphenidate, Ritalin) also a VMAT inhibitor similar to Amphetamine... Dopamine is the wakefulness, concentration chemical.
My theory is that by taking it at night...

1) you can't sleep well cause the dopamine wakes you up...
2) If you do sleep, you might wake up with acute drug withdrawal essentially..
3) in the long term, you build a tolerance to dopamine and your receptors desensitize.

Yet if you do take take it in the morning, it supposedly binds to 5ht2a (psychedelic serotonin receptor) not very functional. So its sort of a catch 22.

Apparently it also binds to Serotonin 5ht2c (decreases release of dopamine, norepinephrine) this is supposedly alleviated by an antagonist like cyproheptadine (antihistamine). Maybe ask doctor to try this at night... I'd be really curious if it helps...

Finally, if you do decide, are able to switch meds... I suspect a "withdrawal" might be possible... you might feel worse before you feel better as your brain recalibrates. Don't mistake that for the effects of new meds.

Quote from: phenethylamine on April 24, 2015, 05:43:32 pm

K sorry, I did say that was just my personal theory so don't take my words as fact.
Also, I didn't mean physical withdrawal from the drug itself, but "tolerance" that develops from the brain "adjusting" to these effects and then "adjusting back" when discontinued.

My second possible explanation... the metabolite "8-hydroxy-efavirenz" theory.
It's basically not the drug, but what it turns into.

The original poster wanted to "understand" how mental decline is possible,
Not be told that it doesn't exist... The issue has to be acknowledged, and understood before it can be rectified or treated...

Phen,

Please provide links that substantiate what you are claiming as fact. To be honest, you have no idea what you are talking about and we do not allow members to post inaccurate information. If you are unable to provide links to back up your assertions, I must ask that you refrain from posting inaccurate information as scientific fact.

Joe

phenethylamine · « **Reply #13 on:** April 24, 2015, 10:20:07 pm »

My second theory was based on the following sources...
_____________________________________________________

Efavirenz and the brain: are we nearer to solving a mysterious side-effect?

..."The new research found that it might not be efavirenz itself that damages nerve cells but a metabolite, a chemical produced when the body acts on the efavirenz molecule.

In the body, efavirenz turns into two molecules called 7- and 8-hydroxy-efavirenz. The researchers incubated nerve cells taken from rats with efavirenz and these two compounds and found that, while all three were toxic to nerve cells, 8-hydroxy-efavirenz (8HE) was ten times more so. This additional toxicity appeared to have an independent mechanism; 8HE jammed open portals into nerve cells called voltage-operated calcium channels (VOCCs). When these gateways are breached, calcium floods into nerve cells, unleashing a burst of brain signals, causing unpredictable effects.

LINK: http://www.aidsmap.com/Efavirenz-and-the-brain-are-we-nearer-to-solving-a-mysterious-side-effect/page/2541037/
______________________________________________________

Popular HIV Drug May Cause Memory Declines

or the study led by Haughey and described online in the Journal of Pharmacology and Experimental Therapeutics, researchers obtained samples of blood and cerebrospinal fluid from HIV-infected subjects enrolled in the NorthEastern AIDS Dementia study who were taking efavirenz. Researchers looked for levels of the drug and its various metabolites, which are substances created when efavirenz is broken down by the liver. Performing experiments on neurons cultured in the lab, the investigators examined the effects of 8-hydroxyefavirenz and other metabolites and found major structural changes when using low levels of 8-hydroxyefavirenz, including the loss of the important spines of the cells."....

LINK:
http://www.hopkinsmedicine.org/news/media/releases/popular_hiv_drug_may_cause_memory_declines

DANIELtakashi · « **Reply #14 on:** April 25, 2015, 06:31:34 am »

I believe that JK means we want only scientifically proved info.
I think that is the best part of this forum.

Joe K · « **Reply #15 on:** April 25, 2015, 12:23:54 pm »

Quote from: phenethylamine on April 24, 2015, 10:20:07 pm

My second theory was based on the following sources...
_____________________________________________________

Phen,

Your first line says it all. Unless you are qualified in the various disciplines, to create and substantiate theories, they are only your opinion. This is my point: you are not qualified to be posting your theories as having some form of scientific basis, when you are unqualified to make such a claim.

If you wish to reference something, as a starting point to a discussion, that's fine. The issue is that you post your "theories" as if they have a sound basis in science, which they do not.

Joe

Tonny2 · « **Reply #16 on:** April 25, 2015, 01:13:30 pm »

Quote from: pinkadam on April 10, 2015, 12:50:36 am

Hi guys

Iam trying to understand how HIV meds impact us mentally. I been on meds for 8 years. Ever since iam on meds my memory power went down but my doctor thinks it is age related. Iam 45 and sometimes i very forgetful and it started impacting my work too. Also iam prone to depression alot. Especially in winter.

Love to hear from you guys on your experiences

thx
Tony

ojo Hi Tony

I've been taking meds for twenty years, I took SUSTIVA (efavirenz) for five years, and never noticed any memory loss, I know that we all react differently to the meds, so, talk to your doctor, there are memory test you can have, to see if indeed you are having problems...just wanted to share my expirence with efavirenz and hiv meds, tho, the problems I have due to hiv meds, especially the first drugs on the market, is neuropathy (hivid, videx, zerit)...wishing you the best...hugs ojo

phenethylamine · « **Reply #17 on:** April 30, 2015, 10:06:56 pm »

Man I feel like crying

I spent a lot of time researching and writing that out to be told it's nonsense or not true. I didn't know we couldn't post theories based on research articles. I thought the reaction would be "oh that's interesting, I never thought of it that way, I will look into it maybe " but was taken with hostility instead... and I guess I responded with more hostility with the implication that I don't know what I'm talking about.
I posted an article with links, and tried to explain it in my own words.

Thanks DanielTakashi for clarifying you can't post links to studies, only on the RESULTS of the studies. I thought we could post opinions/discuss studies... but I agree yeah maybe I should keep those kinds of things for my own treads instead of posting them on someone else's question. I thought it would stimulate discussion, but just seems to be causing fights

zach · « **Reply #18 on:** April 30, 2015, 10:35:48 pm »

phen, it's aight man, really... sometimes we have to beat sense into each other. you made some wild ass claims, and you got schooled a little, it's no big deal. joe rightly holds a strict interpretation of the word "theory"

you want some hugs? i'll hold you

phenethylamine · « **Reply #19 on:** April 30, 2015, 11:42:59 pm »

Yes please

zach · « **Reply #20 on:** May 01, 2015, 01:31:50 am »

Yeah, read your last three posts, we can hear the stress, it's ok though (((((phen))))

Sorry you're going through a tough stretch. I've had my own moments of doubt on this journey. I got a little nostalgic this evening, I've been out of the hospital for a year and my dog is a year old. So I read all my old posts and when I got to my breakdown posts, I can see now how manic I was then. I can also see the causes and triggers. I couldn't see any of that then. I feel like that's sort of where you are at now. I hope you handle it better than I did.

First thing,

You've done WAY too much research, like way way too much... Now ain't the time, save that shit for months down the line when you're in a stronger head space... you're mind fucked. Put some distance between your dx, look back with a different perspective. Go do something, a hobby, get out of your head.

Second, slow down, you're trying to wrap your arms around the WHOLE thing... it's too damn big, you're overwhelming yourself. Just focus on where you are right now, and what you're going to do tomorrow. Stop thinking about every damn possible side effect and cross checking them... you're out of your depth.

You said it yourself in a previous post, so I'll repeat it without judgement. Your posts taken as a whole scream out "manic"
Do you think maybe there is something to that? You keep worrying meds are going to affect your mental health... correct me, but haven't you dealt with those types of issues long before HIV? So why park so much blame on a med that is going to keep you alive?

It's hard to read to much into your body of work here, but rereading all of your posts some things strike me.

You never introduced yourself or shared your own story. That's ok, you don't have to if you don't want. But you hit the ground running so hard, (about when to eat) it's difficult for us to know you enough to offer helpful support.
You've posted about two things; food, and the mental side effects of meds. That's it. What gives there? Are those really your pressing concerns that weigh on you most? From my point of view, it reads like you have some degree of eating disorder... and you are so afraid of meds you're manifesting your worries. You've been on meds only two months now, already switched once, and now you sound like you want to do it again. Hell it takes a few weeks or longer to settle into a med and get acclimated. You're not giving anything enough time and opportunity to really know how it's going to go. Very reactionary.

Gonna ask a couple questions here, because I think the answers may shed light on at least a part of your story.

Your username. Explain it, honestly. Why that name?

What is your drug use history? No judgement here Phen, I'm an opiate addict. But obviously you have some experience with drugs, so to what degree? Are you still on Vyvanse? You understand that it is CNS stimulant right? But you keep wanting to point a finger at HAART meds.... Phen, those are what is going to keep you alive. Thats a promise. Instead of blaming them, praise them, even if you hate them.

Do you see a connection with the way you think about food, your mood, and the way you think about everything else (including drugs/meds)? Have you ever spoke to a doctor about eating disorders? Do you think I'm barking up the wrong tree? Not even in the same forest?
If you made it this far, another hug ((((phen)))) Now go rest, it's late no matter where you are.

phenethylamine · « **Reply #21 on:** May 01, 2015, 05:36:46 am »

Phenethylamine is our body's endogenous (naturally) produced amphetamine (stimulant) found in trace amounts in chocolate and is believed to be the chemical equivalent of "love". I just thought it seemed cool.

It's also the prototype from which most stimulants are based on...(Meth, Speed, Ritalin, etc.) My drugs of choice that are somewhat responsible for my diagnosis... so it seemed poetic somehow...

I'm still on Vyvanse, though my stimulant tolerance is so high that it's noticeable when something holds the effects back. I'm aware it's a stimulant. It's sort of the nature of these drugs that make people develop Obsessive Compulsive characteristics and hyper focus on details that seem irrelevant to others. Their purpose is to keep people awake, and studying... so these HIV meds just happen to be the focus of my research right now. I'll start with the ones I'm taking then move on to the ones I could be taking, then learn about the history of those I'll never take until I've mastered the topic lol Somehow being proactive in my treatment relaxes me and is just a coping mechanism I guess.

I'm aware they are keeping me alive lol I am incredibly grateful for that... but "praising" a drug doesn't make for much conversation lol. If I created a post saying my pill is perfect, it works, no side effects...then what? This forum would be very quiet. Right now they are good, and manageable..but they could be perfect and drug companies won't know what to change if no one discusses improvements.

I complained about the food cause I felt like absorption issues are outdated.
There are ways around this now, beaded technology that dissolves in the intestines...prodrugs that get activated in the liver or blood, adding citric acid to a pill instead of relying on a persons stomach acid, and contraindicating antacids. I can't do the actual chemical design, what drug kills what virus... that's the hard part.. but I can contribute these little superficial suggestions to improve the experience for myself and others in the future. I like to think drug companies read these forums even if its wishful thinking haha... If I say...I don't mind taking it with food cause it keeps me alive... then they will think, great food not an issue.

Somehow you all assumed I was anorexic from that post lol.. I'm 5'4 maybe 5'3, 115pnds...25" waist... I'm just short, skinny and miniaturized, probly why I turned gay haha... yes 500cal is a lot for me at once. Especially if I ate earlier and have to eat again just to take meds.

I've had never ending problems seeking psychiatric help. Waiting lists, missing appointments, and having to start over. My current doctor is just annoying with his "alternative" treatments. I ask for sleep meds, he gives me an antipsychotic, I ask for an antianxiety meds... he gives me antidepressants...I ask for ADHD drug... he gives me wellbutrin... everything is "off-label"... it works for my condition..but that's not what its supposed to be used for. It's been 6 years of "trying" crap that I knew wouldn't work... he had to eliminate all the things I didn't want to take before I could try the tings I originally asked for in the beginning... and I can't change doctors due to living in small area in isolation. I waited a year on a list to see a psychiatrist... and it ended up being hippy crap. Drawing a picture that symbolizes being cured from depression. There you go, you are cured. In the group we weren't aloud to share our personal stories in case they got sued for confidentiality. So we just played Pictionary.

Is that an ok introduction?
Sorry to the Original Poster for hijacking this thread.

K, It's 5:30am I'm not even sure what I'm writing anymore..
I better post before I hit the wrong button and delete this..

zach · « **Reply #22 on:** May 01, 2015, 08:54:43 am »

there ya go, some truth!

many of us know what phen is, that's why it raised a flag. maybe two of us have never used, maybe. we've all earned a place here. your username is the thing that popped out to me on your first post. surpise surprise, a tweaker doesn't wanna eat (please don't be hurt by that)

glad you threw OCD out there, i didn't want to point that finger. you're self aware, that's a good thing. i think you're equating your experience with drugs, with expertise in the prescribing of pharmaceuticals. off label use of meds is pretty standard. the way you're shopping your meds, ease up man, you're doing on a number on your mind and body. sure your experiences give your a better perspective, but you're not the doctor. if you trust your doc, listen closely to them. feels like your digging up studies and papers and drowning in the details.

maybe praise was a harsh word, god knows i hate a gilead. but read back through your posts, look close at the ones where you talk about your haart meds. sounds like a tweaker talking 90 miles a minute. i think you're blaming hiv meds instead of the stimulants. not saying get off stimulants, if you need them use them, but know which drug is talking.

it's not that i think you're anorexic, i hadn't gone there at all. there is a broad spectrum of food issues. but something is going on there, some level of obsession that to this reader, reads unhealthy.

sorry to hear you've had troubles getting into effective therapy. i know for me, it was years of self sabotage and being an uncooperative patient. don't give up on it, and don't expect they are going to do what you want them to do. let them do their their job. i hate cognitive behavioral therapy, but i know it is effective for me. i hated doing it, threw up all sorts of blocks that only hurt me. in the end, i just look at it as taking my punishment.

get some rest, hope you feel better, try to clear your head a little, see things in a different light.

calm all that stress down.

mecch · « **Reply #23 on:** May 01, 2015, 10:27:02 am »

Quote from: phenethylamine on May 01, 2015, 05:36:46 am

I'm still on Vyvanse, though my stimulant tolerance is so high that it's noticeable when something holds the effects back. I'm aware it's a stimulant. It's sort of the nature of these drugs that make people develop Obsessive Compulsive characteristics and hyper focus on details that seem irrelevant to others. Their purpose is to keep people awake, and studying... so these HIV meds just happen to be the focus of my research right now. I'll start with the ones I'm taking then move on to the ones I could be taking, then learn about the history of those I'll never take until I've mastered the topic lol Somehow being proactive in my treatment relaxes me and is just a coping mechanism I guess.

Stimulants such as Ritalin do not make people develop OCD traits. In fact they are given to people with OCD traits, sometimes, because they have a "counter-intuitive" effect. They help a kind of OCD which is irrational and scattered and ruminative, become more focused, rational, grounded and productive.

Which drugs are you using without a prescription from a doc?

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Author Topic: Impact of HIV medication (Read 13700 times)