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Author Topic: Why do people wait to start meds  (Read 627 times)

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Offline WowThatWasLifeChanging

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Why do people wait to start meds
« on: April 23, 2014, 12:52:44 PM »
I am newly diagnosed and am wondering if I am missing something...I have spent the last week of my life reading these forums. If you have a viral load, why would you not start the meds? I am so confused. I see people with higher levels than me that say they have never taken meds. I am CD4 of 486 and VL of 52,000 and my ID doc says I didn't need to start meds yesterday or tomorrow but I need to start in the next month. Why would people choose not to take the meds that make the virus go, I guess, dormant? What am I missing? I realize there are side effects, but even asprin has side effects. Please enlighten me before I start down the med path.

Offline mecch

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Re: Why do people wait to start meds
« Reply #1 on: April 23, 2014, 01:10:32 PM »
Excuse me, are you asking for recommendations why you should start or wait?

Or do you really want to know why other people wait?  I'll give you a summary of some reasons I have seen on this forum, cause I guess you couldn't read that yourself.

Reasons people wait:

can't afford the drugs right away

need to get insurance or social services in order to cover the drugs

feel that they are psychologically not ready to start

doctor says that they can wait awhile, there is no pressing need to start

research hasn't proved a clear benefit starting above certain immune markers - in the long run.  research says its good idea to start early AND that its a good idea to wait until "needed" - so either way, its a fine choice.




“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Why do people wait to start meds
« Reply #2 on: April 23, 2014, 01:14:08 PM »
Do you want a list of the unfortunate circumstances and explanations for not starting right way, the "bad reasons", too?


Its a great idea if you are ready to start, go ahead.
Also the virus doesn't exactly go "dormant" - slowly replication is controlled until its very very minimal, but there is still resting virus in reservoirs and I think always a bit of active replication.

If you are patient, if your first combo is not side effect free (and it might be), then you can try another eventually, until you find the least noticeable one.

Welcome to the forum by the way.
« Last Edit: April 23, 2014, 01:38:52 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Why do people wait to start meds
« Reply #3 on: April 23, 2014, 02:03:42 PM »
Overlooked another important reason people don't start when they are diagnosed.  Many countries don't put choice in the power of the patient. The doc decides when to prescribe, based on national guidelines for when treatment should start.
« Last Edit: April 23, 2014, 02:12:53 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #4 on: April 23, 2014, 02:19:52 PM »
Excuse me, are you asking for recommendations why you should start or wait?

Or do you really want to know why other people wait?  I'll give you a summary of some reasons I have seen on this forum, cause I guess you couldn't read that yourself.

Reasons people wait:

can't afford the drugs right away

need to get insurance or social services in order to cover the drugs

feel that they are psychologically not ready to start

doctor says that they can wait awhile, there is no pressing need to start

research hasn't proved a clear benefit starting above certain immune markers - in the long run.  research says its good idea to start early AND that its a good idea to wait until "needed" - so either way, its a fine choice.


Hello,
I was really asking why others wait. That option wasn't given to me, so I am in the process of deciding what meds to start on and for all of the things I have read on here I wasn't clear on why people would wait. I read somewhere that once you start the meds you cannot go off of them or the virus replicates out of control so I wasn't sure if that was valid or part of the reason. I see a lot of people say they chose not to start the meds and their VL is over 100,000 so if these "cure" meds (quote from my ID doc) are so great, I just couldn't understand why people would not start them. I appreciate your replies...

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #5 on: April 23, 2014, 02:24:03 PM »
Do you want a list of the unfortunate circumstances and explanations for not starting right way, the "bad reasons", too?


Its a great idea if you are ready to start, go ahead.
Also the virus doesn't exactly go "dormant" - slowly replication is controlled until its very very minimal, but there is still resting virus in reservoirs and I think always a bit of active replication.

If you are patient, if your first combo is not side effect free (and it might be), then you can try another eventually, until you find the least noticeable one.

Welcome to the forum by the way.

Still trying to understand all the med choices and the resistance that can occur from switching meds. This is more than confusing to me (and I work in healthcare) I am being told to proceed with my plans to have a baby but can't take any of the one a days (stribild) and have to choose a combo (posted in another forum asking for side effect advice from the combo options-no replies yet). Hoping for minimal side effects. :-) I haven't really slept thru the night since my dx 8 days ago so it is scary to think the meds could make the insomnia worse. :-/ Thanks again for your reply.

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #6 on: April 23, 2014, 02:26:03 PM »
Excuse me, are you asking for recommendations why you should start or wait?

Or do you really want to know why other people wait?  I'll give you a summary of some reasons I have seen on this forum, cause I guess you couldn't read that yourself.

Reasons people wait:

can't afford the drugs right away

need to get insurance or social services in order to cover the drugs

feel that they are psychologically not ready to start

doctor says that they can wait awhile, there is no pressing need to start

research hasn't proved a clear benefit starting above certain immune markers - in the long run.  research says its good idea to start early AND that its a good idea to wait until "needed" - so either way, its a fine choice.

The inconsistencies in the research are quite aggravating. Different counties, different opinions. I keep trying to make myself believe this is just a chronic disease and I will be okay but I'm really scared. As I'm sure most are with their new dx.

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #7 on: April 23, 2014, 02:28:16 PM »
Overlooked another important reason people don't start when they are diagnosed.  Many countries don't put choice in the power of the patient. The doc decides when to prescribe, based on national guidelines for when treatment should start.

I think in the US (where I live) is CD4 below 350, mine is 486, thus adds to the confusion of not being given the choice. I don't think I would opt out anyways because I want to minimize the replication, I assume that is how to have the best outcome, but that's why I was asking, do others opt out of taking meds because they are just waiting for it to get worse so they don't become resistant, etc. I guess not...money and insurance are a big factor.

Offline mecch

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Re: Why do people wait to start meds
« Reply #8 on: April 23, 2014, 02:46:49 PM »
do others opt out of taking meds because they are just waiting for it to get worse so they don't become resistant, etc. I guess not...money and insurance are a big factor.
I don't understand your questions but you seemed to have answered it yourself.
People don't start medicine for the reasons above.

If you are worried about resistance developing on treatment - it should not happen. It only happens if someone is non-adherent.  And only sometimes. Or, if the first combo was not chosen correctly to fit the strain of HIV.  Or starting and stopping meds incorrectly.

Nobody is waiting around for their infection "to get worse" - they aren't starting for reasons suggested above...

You can start now if you are ready to take your pill everyday, there is no reason you won't be ok for decades to come.  You maybe have a misplaced fear of resistance.  Fear of resistance is NOT a reason to delay starting meds, once the necessary tests have been done and the combo has been chosen.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #9 on: April 23, 2014, 03:03:32 PM »
MECCH,

I am all over the place and my head is spinning with thoughts so I'm sorry they are not coming across clearly. Resistance is a huge part of my fear, your words made me feel better, thanks.
« Last Edit: April 23, 2014, 03:06:32 PM by WowThatWasLifeChanging »

Offline mecch

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Re: Why do people wait to start meds
« Reply #10 on: April 23, 2014, 03:09:42 PM »
The doctor will send your blood to analyse the strain. Then choose a good combo. Probably you will have a choice of different combos. All will work well against your virus.  Resistance isn't something you need to worry about.  There are plenty of things to figure out and get rolling.  But rest assured, there is perfectly effective medicine available and a lot of different varieties of it. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline zach

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Re: Why do people wait to start meds
« Reply #11 on: April 23, 2014, 03:28:39 PM »
wow,

hey, how are ya. first, lets pause, welcome to the group! two great things you've got going right. you are in medical treatment. and you found us! just slow down and take a deep breath, everything is going to fine, no matter which course you and your doctor decide.

there are legitimate justifications for both courses of actions. your doctor will at least want to see your genotype/resistance panels before you really select which meds to take. nothing horrid will happen if you wait to begin meds until those results are in.

am i wrong in thinking you're the same poster intending to have a child? if so, listen very carefully to your doctor. you're in a very safe zone for awhile with your numbers. you're not going to suddenly get sick, at all. you're not going to die from this, ever, with treatment. your viral load is quite manageable, and your cd4 will rebound to more normal levels with treatment. as is, your cd4 is simply low normal. its not an absolute value one size fits all people.

you are not in position to worry about resistance, that is needless at this point. resistance mainly comes from not being adherent in taking your meds daily, or of taking breaks in your meds. get a paper copy of your labs and resistance tests for yourself, there are times they come in handy. look at your resistance profile, sensitive is GOOD. i'm betting, you'll see a string of sensitives

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #12 on: April 23, 2014, 03:42:54 PM »
wow,

hey, how are ya. first, lets pause, welcome to the group! two great things you've got going right. you are in medical treatment. and you found us! just slow down and take a deep breath, everything is going to fine, no matter which course you and your doctor decide.

there are legitimate justifications for both courses of actions. your doctor will at least want to see your genotype/resistance panels before you really select which meds to take. nothing horrid will happen if you wait to begin meds until those results are in.

am i wrong in thinking you're the same poster intending to have a child? if so, listen very carefully to your doctor. you're in a very safe zone for awhile with your numbers. you're not going to suddenly get sick, at all. you're not going to die from this, ever, with treatment. your viral load is quite manageable, and your cd4 will rebound to more normal levels with treatment. as is, your cd4 is simply low normal. its not an absolute value one size fits all people.

you are not in position to worry about resistance, that is needless at this point. resistance mainly comes from not being adherent in taking your meds daily, or of taking breaks in your meds. get a paper copy of your labs and resistance tests for yourself, there are times they come in handy. look at your resistance profile, sensitive is GOOD. i'm betting, you'll see a string of sensitives

Thanks Zach. Think I might have gone a little more nutty this past week if it wasn't for this group. Although I just officially joined today I have stayed up for days reading countless threads to the point where I'm not sure I'm comprehending anymore.

Inbetween crying and hiding my tears from my kids I am trying to calm down. I am the same poster trying to figure out the 3 combo options I have been given for a potential pregnancy bc my ID doc doesn't want me to start Stribild since she knows I was in pregnancy planning before this dx, and she tells me to continue with my plan. Going to have to pick something on Tuesday and start and hope for the best. What I really wish was that the CD4 and VL's gave some kind of idea of how long I have been affected, that will drive me nuts!  I was waiting earlier on my 3 yr old daughters results and she is negative, thankfully.

Offline zach

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Re: Why do people wait to start meds
« Reply #13 on: April 23, 2014, 03:49:30 PM »
let go of when you were infected. it doesn't really matter, or help you move forward. thats where your focus needs to be. the future.

all this emotional storm you're in now, its normal, its tough, weather it for that little girl of yours. stay confidant that you can handle all of this, and more. i am so grateful to hear your daughter is negative, that is cause enough for you to go sing from the hilltops.

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #14 on: April 23, 2014, 04:10:12 PM »
let go of when you were infected. it doesn't really matter, or help you move forward. thats where your focus needs to be. the future.

all this emotional storm you're in now, its normal, its tough, weather it for that little girl of yours. stay confidant that you can handle all of this, and more. i am so grateful to hear your daughter is negative, that is cause enough for you to go sing from the hilltops.

You are right, it doesn't really matter, just irritated because both of the 2 people say it wasn't them, when it was clearly one of them. One option is my daughters father which is why I had her tested even though I tested neg at beginning of pregnancy with her. My daughters fathers mother is HIV+. Oh well, time to move on and care about me and not them. Just sucks for the rest of the people one of them will infect by denying their status. Will pass their info to the department of health and be done with thinking about it.
I didn't sing from the hilltops but I did jump up and down with relief. Not sure I could have handled her being pos, after having just lost a 10yr old child 3 months ago and learned of my own dx a week ago. If "God only gives you what you can handle" I need him to receive my letter that I am NOT superwoman. LOL I am scared of the meds but more scared of not taking them. Thankful for the strides HIV meds have made of the past 3 decades. I truly believe a real cure is going to come someday based on the gene that makes 1% of the worlds population immune to HIV and the bone marrow dude. Apparently not before the vaccine though. Going to stop freaking out now. thank you.

Offline mecch

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Re: Why do people wait to start meds
« Reply #15 on: April 23, 2014, 04:15:27 PM »
Im sorry to hear of your child's death.  :(
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WowThatWasLifeChanging

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Re: Why do people wait to start meds
« Reply #16 on: April 28, 2014, 05:22:01 PM »
Thanks mechh

 


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