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crizrink
Newbie

Reged: 08/05/07
Posts: 1
Am I the only one wha has decided to stop MEDS?
      #229142 - 08/05/07 08:42 PM

I have taken control of my life and stopped all medications 1.5 years ago. I can not get ANY medical proffesional to support my decision!! When is mention that I want "PALLATIVE" care they get this grimace look on the faces (it is kind of funny actually)

I know I can't be the only one who has decided to let my body do what it is going to do it sure would be nice to talk to some others out there that feel the way i do.

Please feel free to contact me.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Am I the only one wha has decided to stop MEDS? new
      #229149 - 08/06/07 10:50 AM

I do not support your decision, but I know a handful that have stopped their meds and are still alive.. I have not met anyone who could stay off them more than 2 years before their viral loads explode and their cd4's crash. Allowing an OI to take hold of me would be way worse than any side effect. Well, thats what I am saying now. Med holiday's are not a wise choice as far as I am concerned but I do understand and support anyone who makes that decision because of problems taking meds because of side effects..

What was your reason to stop if I may ask?

Eric

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Robert1
All Star

Reged: 05/29/07
Posts: 96
Re: Am I the only one wha has decided to stop MEDS? new
      #229246 - 08/08/07 07:01 PM

Why do you want to commit suicide? Why are you ready for pallative care? Are you depressed? Tired of living?
There are surely others as self destructive but I guess they just screw up their meds and don't talk about their urge to kill themselves. And this is a site where people are knowledgeable and empowered, not the type to commit suicide.
Just my opinion.
Robert

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PozInMaine
Newbie

Reged: 09/01/06
Posts: 2
Re: Am I the only one wha has decided to stop MEDS new
      #231658 - 09/28/07 06:28 AM

You and you alone can decide what's right for you. I have quit meds many times over the years for various reasons. However, don't be surprised at the astonishment of medical professionals who don't understand why you might make such a choice when others are clawing at the chance to survive. Please keep in mind that I am not sitting in judgement of your choices, but would encourage you to think further about how you might better your situation. Returning to treatment has been much easier than I thought, with new drugs and fewer side effects. I personally needed to address my mental state as depression had the best of me. We all get tired of this. Please don't give up!

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vokz
Grand Master

Reged: 09/06/07
Posts: 164
Loc: London, UK
Re: Am I the only one wha has decided to stop MEDS? new
      #231681 - 09/29/07 03:48 AM

Much as your decision saddens me, I do not think that anyone has any right whatsoever to criticise your choice .. let alone talk about it being self-destructive and likening it to suicide.

Access to effective palliative care has long been recognised (even by the World Health Organisation and most medical professionals) as an essential component of the package of care for people living with HIV and AIDS .. and if your treatment to date has focussed solely on the clinical aspects of therapy and viral suppression, then I for one can totally understand the difficult choice that you have made.

I have the luxury of getting my treatment in a setting where palliative care for all is taken for granted and offered under one roof at the point of diagnosis and treatment - through doctors, nurses, psychiatrists, psychologists, social workers, physiotherapists, welfare benefits advisors, occupational therapists, sex therapists, art and music therapists, aromatherapist, masseurs, acupuncturists, herbalists, dieticians, counsellors, adherence support workers, respite services and religious/spiritual advisors etc. - and where even the HIV diagnosis is delivered through the experienced HIV-positive members of the palliative support team, rather than directly from a clinician.

When we have access to services like that (or even just some of those services), it is all too easy to forget just how important the small holistic touches can be .. and just how difficult it would be for us if we did not have access to any of them.

I do not know what country you are in, but - if it is at all possible - I would urge you to explore the possibility of getting your treatment elsewhere - from a modern multiprofessional HIV care team - not just with a view to getting access to competent palliative care; but also to exploring how, with that care in place, it may even be possible to reintroduce you to a properly supported medication regimen that pays attention to your physical, emotional and spiritual needs.

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SteveA
Member

Reged: 10/31/07
Posts: 20
Loc: Midwest USA
Re: Am I the only one wha has decided to stop MEDS new
      #233195 - 10/31/07 04:11 PM

First let me just say, try not to make "Absolute" decisions about taking meds. I've had two drug holidays myself. The first one was three years long with no ill effects, the second I took two years later and lasted for two years. Each time I restarted my meds when my T-Cells got below 250. I know others don't respect my decision but I did what was right for me and my quality of life! I wouldn't change my decision at all if I had to go back and do it again.

My Doctor supported my decisions though which was a HUGE help for me. He continued working with me and I continued working with him and maintained all of my follow up visits with him religiously.

Everyone must do what's right for them personally and there's no standard procedure for drug holidays to recommend yet. Talk to your doctor or find a new more open minded doctor who will listen to you. It's your health and you are in charge of your own life. Best of life to you.

Steve

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