Resources for stopping treatment

[Perky]

Hey there.
Sorry I'm newbie here, not new to HIV. Long termer - mid 80s seroconversion, AIDS diagnosis in early 90s, [insert history here].

I've been looking around for resources on what to expect when stopping treatment. Unfortunately my Search-fu and Google-fu are failing me. 

Suggestions on threads here, resources online, or search terms that might work for this?

[Mindless]

Well,

you say you’re a long-term survivor: what would you expect stopping meds? I guess you should know better than anyone else. Or maybe I don’t get your point.

[Perky]

Thank you for responding.
Do you have any suggestions on threads here, resources online, or search terms that might help me understand what to expect when stopping treatment?
Thanks!

[Jim Allen]

Hi

Welcome to the forum.

I'm not sure I understand what you are looking for? Perhaps you can elaborate?  Is this a drug holiday or stopping for good?

or search terms

"HIV disease progression" "Untreated HIV prognosis" "HIV/AIDS Mortality rate untreated"  "The Strategic Timing of AntiRetroviral Treatment (START) study"

[Perky]

Thanks for your response.
I'm considering stopping for good and looking to coordinate the last items on my bucket list to EOL.

Thank you for the search terms!

[Jim Allen]

Ok.  I'm sure ill hear some noise about this later but sounds like you have your reasons and have given this great thought.

"HIV progression" might be a place to start, plenty of references and then perhaps start looking at "AIDS-defining illnesses" "AIDS-Related symptoms" AIDS-related illness" as you might end up with multiple as you progress.  Keeping in mind people will progress at different rates. So just as a suggestion, perhaps finish the bucket list first before stopping treatment

My final comment on this topic is if you are considering natural progression I can think of better less horrific ways of going out but each to their own.

Take it easy, best Jim

http://i-base.info/ttfa/section-1/8-how-quickly-does-hiv-progress-in-different-people/

https://emedicine.medscape.com/article/211316-overview#a6

https://www.hiv.va.gov/patient/diagnosis/OI-common-illnesses.asp

https://www.ncbi.nlm.nih.gov/pubmed/27349729
the majority of the patients who do not receive HAART die within 2 years of the onset of AIDS.

[Perky]

Thanks for not making my query a big ol'drama.
Also why I posted here instead of the more "hey, I'm new to HIV" sections - I figured most people who've been living with this for a few decades have considered this, or known someone who has considered it. 

I sorta know what the score is because I've been at zero CD4s a few times and before protease inhibitors had my affairs in order on the "any day now" train.  I just need to factor in the long term infection in my current understanding.

Thanks again!
Sorry I can't be a supportive hopey hopey 'come on you can do this' guy, but did that gig too long and I'm spent.

[leatherman]

help me understand what to expect when stopping treatment?

sorry to hear you feel this way.

However, (here's my obligatory "no, don't do that") watching my first partner die (AIDS/thrush/pneumonia) before meds; living through my second partner dying of AIDS/non-hodgkins lymphoma; and having myself come within hours of dying of AIDS (PCP specifically) not once but twice in two years,  I would respectfully suggest you not leave the world by AIDS. Death is never very nice; but AIDS deaths are terrible things. They are not fast and often filled with multiple life-altering illnesses long before the end. (factors you should consider as you might not have the health to fulfill those bucket list items)

with that said, on to your question. Simply search for "untreated hiv progression". Nothing has changed in 40 yrs. Untreated HIV is still the same terminal disease it ever was with the same ending.

[Perky]

Thanks for your response, leatherman.
And thank you for sharing your experiences.
I can relate as I've done the 'get my affairs in order' twice now.

I'm curious if there's new information about the rates of demise after things like med failure, or if it changes the final progressions. I'm having a difficult time parsing the data that applies to my situation as it seems to be geared into frightening the newly seroconverted into taking their meds. As you can understand, it's a difficult discussion with the doctor.

[leatherman]

if there's new information about the rates of demise after things like med failure, or if it changes the final progressions.

the rate of demise? untreated HIV is pretty terminal, so the rate is 100%. but the personal time before someone dies is highly variable. It would depend on the level of a person's current cd4 count, how long they have been able to keep HIV suppressed, and current condition of their health mixed with a dose of surprise at what opportunistic infections your immune system would succumb to first. In general terms, HIV progression follow this course:

it seems to be geared into frightening the newly seroconverted into taking their meds.

well it's not really geared to frighten as much as it's simply the truth. Untreated HIV is pretty bad. If I believed I no longer wanted to live, I would not choose death by HIV, as it can be quite slow (usually between 2-4 years and could be very unpleasant depending on the OI)

Back when I stopped meds twice (AZT and Sustiva) it was a mere 9 months before I was hospitalized with PCP. These days, with as healthy as I've gotten, I would like to assume that I had a few years before becoming that ill again. But without knowing how fast my mutated HIV (I have several resistance issues) would bounce back (there's no way to measure the effectiveness of HIV) or the current strength of my immune system (there's no way to measure the effectiveness of cd4s), it might be years but it could also be only months.

There are simply too many unmeasurable variables in the equation to calculate the length of the dying period or the possible multiple causes of that death; but that graph does represent the generalized data about death from HIV

[Mindless]

All the questions and data are surely interesting on a scientific level, still I don’t get why on heart someone would decide to die of AIDS...

not my business of course but if I one day decided life is not worth living anymore, I think that would be by far the last option I’d consider: why going through that ordeal?
Aren’t there much less painful and faster ways to kill themselves? Yes, because stopping meds and let yourself die of a deadly illness is practically same as suicide.

Just wondering

[J.R.E.]

Hey there.


I've been looking around for resources on what to expect when stopping treatment. Unfortunately my Search-fu and Google-fu are failing me. 

Certainly, as a long term survivor, you must have known plenty of people with HIV that passed on, especially before the cocktail. I couldn't begin to give you all the names of people I knew that passed on.

Quite a few of those that I knew that had passed on,  I was there at their bedside in the last moments of life, and sat with them for many hours in the few short weeks prior to them passing.  Have you never been at someone's bedside of someone who had aids and only had a couple weeks ( If That) left to their life ? If you have,  then you CERTAINLY know, what their End of life experience was about,  that is what you can expect for yourself.



Ray

[MarkintheDark]

Hello Perky - First, I can understand your reasoning as an LTS when it all gets to be too much.  I'm perhaps being presumptuous, but sounds like a quality of life issue.  I fully respect that particularly when most health systems are set up to preserve life at any cost, including quality of life and despite advanced directives.

Among a couple friends, they've made specific exit strategies, in addition to the regular "get your affairs in order" routine.  That is, their plans have been to exit on THEIR terms.  At the risk of violating TOS and getting my @ss booted from the boards, I'm suggesting that may be an area to explore if you haven't already.

Yours is a tough subject to discuss.  Personally, however, I think it's one perfectly appropriate in the LTS forum.  Thank you for being so candid.

[harleymc]

Perky since you are hellbent on self harm, go for it

But please do consider some counseling as you don't have to be miserable in your existence.

[virgo313]

Reading this post give me chills felling. I think it is because I have spend nights in an “open ward” and able to see “AIDS people”. Dare not reply as I know those are not the worst I have see since I was warded in 2015 and not in the 80’s which I imagine at that time is far worst then I could imagine.

[em]

I will not lie the thought has crossed my mind . but having had the full effect of what untreated HIV can do to myself back int the mid nineties so must have had the infection for years prior and seeing friends pass away . I do not entertain the thought for very long.  the alternative of taking pills and extending my life for as long as possible seems like a better choice. at least for me .  I can not make the decision for you or force you to see the error in this way of thinking .  It should be self explanatory. obvious to the most casual of observer.   that to be or not to be , to be at least for me came easy .   

I hope you all the best

em

[guitargal]

I have had many bouts with the thought "I can't keep living like this"
Poverty, isolation can really mess up ones' mind.

I have pulled myself up only to be knocked down again and again.

I choose life as I can find some wonderful things to do and I keep adding to my bucket list hoping for the best.

I am in search for a good therapist again and holding on until then as fragile and alone I feel at times I know it will pass and good things will happen again.

please don't give up.

[Grasshopper]

I understand and relate that everyone has their limit of what they can tolerate.
IF you have reached...or nearing your limits...then letting nature take it's course is NOT the easy way out. The best option would be is to take matters into your own hands.
This is a forum for people wanting to survive and live with hiv. Therefore I suggest you to search for other venues for information regarding "the easiest/painless way out".