Welcome, Guest. Please login or register.
October 09, 2024, 02:46:46 am

Login with username, password and session length


Members
Stats
  • Total Posts: 774995
  • Total Topics: 66544
  • Online Today: 894
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 1
Guests: 834
Total: 835

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Resources for stopping treatment  (Read 14528 times)

0 Members and 1 Guest are viewing this topic.

Offline Perky

  • Standard
  • Member
  • Posts: 5
Resources for stopping treatment
« on: November 13, 2019, 10:06:04 am »
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?

Offline Mindless

  • Member
  • Posts: 363
Re: Resources for stopping treatment
« Reply #1 on: November 13, 2019, 10:32:54 am »
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.
Dx Feb. 2018, CD 320, %14

- Atripla Feb/18 -->
- Complera (generic) 2019 -->
- Dovato (generic) 2021 -->

Offline Perky

  • Standard
  • Member
  • Posts: 5
Re: Resources for stopping treatment
« Reply #2 on: November 13, 2019, 10:36:16 am »
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!

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 23,029
  • Threads: @jim16309
    • Social Media: Threads
Re: Resources for stopping treatment
« Reply #3 on: November 13, 2019, 11:49:56 am »
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?

Quote
or search terms

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




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

My Instagram
Threads

Offline Perky

  • Standard
  • Member
  • Posts: 5
Re: Resources for stopping treatment
« Reply #4 on: November 13, 2019, 11:57:12 am »
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!

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 23,029
  • Threads: @jim16309
    • Social Media: Threads
Re: Resources for stopping treatment
« Reply #5 on: November 13, 2019, 12:27:09 pm »
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.

« Last Edit: November 13, 2019, 12:31:19 pm 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

My Instagram
Threads

Offline Perky

  • Standard
  • Member
  • Posts: 5
Re: Resources for stopping treatment
« Reply #6 on: November 13, 2019, 12:45:57 pm »
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.

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,781
  • Google and HIV meds are Your Friends
Re: Resources for stopping treatment
« Reply #7 on: November 13, 2019, 03:47:56 pm »
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.
leatherman (aka Michael)

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 Perky

  • Standard
  • Member
  • Posts: 5
Re: Resources for stopping treatment
« Reply #8 on: November 13, 2019, 08:14:53 pm »
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.

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,781
  • Google and HIV meds are Your Friends
Re: Resources for stopping treatment
« Reply #9 on: November 14, 2019, 06:13:48 am »
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
leatherman (aka Michael)

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 Mindless

  • Member
  • Posts: 363
Re: Resources for stopping treatment
« Reply #10 on: November 14, 2019, 08:53:21 am »
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

Dx Feb. 2018, CD 320, %14

- Atripla Feb/18 -->
- Complera (generic) 2019 -->
- Dovato (generic) 2021 -->

Offline J.R.E.

  • Member
  • Posts: 8,209
  • Positive since 1985, joined forums 12/03
Re: Resources for stopping treatment
« Reply #11 on: November 14, 2019, 10:27:47 am »
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

Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 UPDATED: As of April, 2nd 2024,Viral load Undetectable.
CD 4 @593 /  CD4 % @ 18 %

Lymphocytes,total-3305 (within range)

cd4/cd8 ratio -0.31

cd8 %-57

72 YEARS YOUNG

Offline MarkintheDark

  • Member
  • Posts: 142
Re: Resources for stopping treatment
« Reply #12 on: November 15, 2019, 04:49:33 am »
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.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline harleymc

  • Member
  • Posts: 1,535
Re: Resources for stopping treatment
« Reply #13 on: November 15, 2019, 05:14:19 am »
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.

Offline virgo313

  • Member
  • Posts: 358
Re: Resources for stopping treatment
« Reply #14 on: November 15, 2019, 09:56:24 am »
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.
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline em

  • Member
  • Posts: 694
Re: Resources for stopping treatment
« Reply #15 on: November 15, 2019, 10:44:03 am »
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

Offline guitargal

  • Member
  • Posts: 114
Re: Resources for stopping treatment
« Reply #16 on: November 21, 2019, 08:49:02 pm »
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.
What a long strange trip it's been

Offline Grasshopper

  • Member
  • Posts: 754
Re: Resources for stopping treatment
« Reply #17 on: November 22, 2019, 03:32:00 am »
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".

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.