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Author Topic: New here and need some help understanding everything.  (Read 2677 times)

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Offline TechOneGSXR

  • Member
  • Posts: 3
New here and need some help understanding everything.
« on: November 05, 2012, 09:35:53 PM »
Well this is my first post, and yes it sucks to have to post here but just from reading around this seems to be the best place for info and support!

I was diagnosed on Sept 27th, went in for my first labs on Oct 11, and they came back the other day when I met my ID Doc for the first time.

I do have to say it is very encouraging knowing that there are in fact people out there in the world that can dedicate themselves to this like he can, awesome person by far.

Anyway I have a couple questions that I forgot to ask him, and I would like a couple different opinions from people that have been around this for a while.

My CD4 count is 410, VL is 12,400. He did perscribe me complera, but I told him I wouldn't be taking it just yet until I felt completely comfortable with it.

So my questions for you guys:

-I have read that the sooner you start meds, the sooner you can run out of meds by becoming resistant to all of them, what is your guys opinion on this subject? From what I have heard if I stay dedicated to the meds, I cannot become resistant? True/False?

-Should I start meds now? My question to him was that I do not want to regret some of these long term side effects later in life (kidney failure and others) and his response was it is either chance regretting it or don't be there to regret it, makes complete sense, but again would like opinions?


Anyway, thanks for the responses in advance, and I look forward to hearing from some of you!

 
I am 23 btw, so "running out of meds" kind of scared me since I am still in the early stages of my life, would it be better to monitor and wait till maybe 30? or until I need them? That way I run out around 50ish? I dont know haha.

Offline WindySkies

  • Member
  • Posts: 113
  • Tested + 10/11/12
Re: New here and need some help understanding everything.
« Reply #1 on: November 05, 2012, 10:41:31 PM »
From what I have read here and on the body website, the common ways to develop resistance to treatment drugs is to either not take them like you are supposed to (daily), and through reinfection which seems to be a big argument about that even being possible.

In regards to whether or not to start meds now, I think most people will tell you it's up to you and your doctor.  I'm in a similar situation as you, except I'm a little closer to 40 then you are.  I was diagnosed on October 10th, and started on Complera on the 31st (halloween).  My numbers were 735-CD4, and 57,00 Viral load.  My doctor recommended starting right away and what swayed it for me was the hope that starting meds with a higher CD4 would help keep it high, or drive it even higher.  I'm also hoping that getting to an undetectable VL will mentally help me feel more normal.

I guess I just didn't want to wait until I was real sick to start treatment.

The Complera has been fine for me, the only tough part has been making sure to take it after eating a 400 calorie meal.  I've never been a calorie counter, and now that I have decided to diet and exercise more, putting together something healthy that's 400 calories can be hard!  The only side effects I have experienced was mild gas, but it seems to be subsiding a little less then a week into taking it.

In my opinion, you're young, your body will be better at fighting things off, why not start treatment now and take advantage of that youth and the ability to strengthen your immune system as much as you can.

Oh, and if you have insurance for your meds, get the Gilead co-pay assistance card.  I used it and it turned my monthly $40 co-pay into $0 copay.

I's been an interesting month for me, the toughest part that I'm trying to deal with is the loneliness, I have decided not to tell any family or friends, so my only outlet to share is pretty much this website.
10/11/2012 Journey Started
10/17/2012 First Labs: VL=57,645  CD4+=730  37%
10/31/2012 Started Complera
11/30/2012 Labs: VL=80  CD4+=929 40%
12/24/2012 Started Stribild

Undetectable since 1/15/13 CD4+= Over 1,400 and 49%

Offline Mrmojorisin

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  • Posts: 211
    • My Blog
Re: New here and need some help understanding everything.
« Reply #2 on: November 05, 2012, 10:55:41 PM »
Becoming resistant and "running out of meds" is kind of a thing of the past. There are a lot of combos out there and newer ones are being developed all the time. Starting meds is a personal thing, and I thing you should give your docs opinion a lot of weight.

Welcome to the forums- There are a lot of great folks here who have been through the ringer and give fantastic advice...
Started Meds On 5/1/2012 Norvair, Truvada, Prezista, and Bactrim

4/17/2012--CD4 83/ VL 353,000  7.0%
5/15/2012--CD4 218/ VL 4,970    14.1%
6/27/2012--CD4 146/ VL 420      6.1%
10/11/2012-CD4-223/ VL-62       9.5%
2/14/2013--CD4-215/ VL-119      13.6%
7/3/2013---CD4-256/ VL-UD       18.0%
10/18/2013 CD4-223/ VL-UD       22.2%
01/23/2014-CD4-381/VL-UD       25.3%--Dropped the Bactrim

"arrrrhhhhh ahhrrhhhhh aaaarrhhh"- Chewbacca

Offline TechOneGSXR

  • Member
  • Posts: 3
Re: New here and need some help understanding everything.
« Reply #3 on: November 05, 2012, 11:21:16 PM »
WindySkies,

Thank you for your advice, I have been thinking that being younger will give an added boost to the meds and help me out overall. I just don't want that what if factor if I ever run out of different meds to take.

I personally, and my girl, think that you should at least tell the family. It will help a lot, and btw feel free to send over a message if you ever need anyone to chat with! I don't know who I got it from, so I am stuck being the only person I know with it which sucks cuz you don't have anyone actually on your level

Jorison, thank you for the advice also, I would like to keep as many responses and different opinions rolling in as possible, even though it should by my choice, I dont have an educated choice....

Offline WindySkies

  • Member
  • Posts: 113
  • Tested + 10/11/12
Re: New here and need some help understanding everything.
« Reply #4 on: November 05, 2012, 11:32:43 PM »
Every other day I weigh the pro's and con's of disclosing to them, and the con's always weigh more.  There is some family stuff that makes it an even more difficult situation.

Do you have any guesses how you contracted it?
10/11/2012 Journey Started
10/17/2012 First Labs: VL=57,645  CD4+=730  37%
10/31/2012 Started Complera
11/30/2012 Labs: VL=80  CD4+=929 40%
12/24/2012 Started Stribild

Undetectable since 1/15/13 CD4+= Over 1,400 and 49%

Offline TechOneGSXR

  • Member
  • Posts: 3
Re: New here and need some help understanding everything.
« Reply #5 on: November 05, 2012, 11:45:00 PM »
Without going into too much detail, the only thing I can think of was at my last job, someone was hurt, and I helped out, and I work in a feild were your hands being cut up is not unusual.

Offline lincoln6echo

  • Member
  • Posts: 109
Re: New here and need some help understanding everything.
« Reply #6 on: November 05, 2012, 11:49:22 PM »
Hey Tech...sorry about your diagnosis.  As a newbie myself, I can relate. 
Looks like, Windy, you and myself are in a similar boat as are a few others on the board who joined recently.  I'm sure we'll be able to help each other out as things go along. I have only told one person, my boss and that's it.  So the forum has been pretty helpful.

I started meds a month ago, a month after diagnosis.  I was in the throws of a bad seroconversion as my infection was recent.  I've been feeling awful and sick overall (you can look at some of my posts for the fun details). That and I knew in my mind that I would have to start meds at some point, so all things considered I decided to start meds right away.  Your CD4's are higher than mine and you don't mention being sick right now (not with an opportunistic infection, I just mean your body being run down like mine) so you might make a different decision.

As for resistance and running out of meds, I had the same concern, but in talking to my Doc and from all the things I've read, there are just so many options now than ever before.  And as Mrmojorisin said, it's more about not being adherent to meds that will have an impact on that.  Treat your HIV meds like you do a multivitamin and take them every day, you'll be golden.  The other thing is, if you haven't already been tested, your Doc can run blood tests to figure out if you have a resistant strain or not.  Has he had those tests done?  If you did have a resistant strain, chances are one of the combos will work just fine. 

In thinking about long term side effects such as heart, kidney and liver issues...since you'll be going in for blood tests at various times in the year, your Doc will be able to detect if those things are even happening and can either change course with meds or add other drugs to combat that stuff. I don't see it as something that's going to creep up and bite you in that ass over night without you knowing it and being able to correct it. 

The other thing that made me decide to take meds now, is that recent trending opinion among HIV specialists world wide, is there is evidence to support taking meds as soon as diagnosed as opposed to waiting.  The thought is, even though HIV levels may be low in the body, there are reservoirs that hide it and keep your immune system working at elevated levels causing inflammation. Over time this may have a burn out effect on your body.  With taking meds earlier this dials down how hard your body has to fight the virus even at those low levels. 

There are a few different threads on here discussing that. I'll try and find it and flip the link over to you so you can read about it. 

Here's one link - http://www.aidsmeds.com/articles/WhenToStart_7512.shtml

Here is the other - http://forums.poz.com/index.php?topic=44493.0

That's my two cents for what it's worth :)

Windy, you are always welcome to give me a shout as well :)
Lincoln. 
« Last Edit: November 06, 2012, 12:15:36 AM by lincoln6echo »

Online tednlou2

  • Member
  • Posts: 4,907
Re: New here and need some help understanding everything.
« Reply #7 on: November 06, 2012, 12:42:54 AM »
Welcome to the forums.  I hope all is well with you, all things considered.

From what you said, you've had only one lab done at this point?  Most experts now believe anyone with HIV should start meds, regardless of CD4 count.  Even before that recommendation, we had the recommendation to begin therapy (or start preparing for therapy) once your CD4 was below 500.  Your CD4 count would fall into that recommendation, but you've only had the one lab.  Personally, I would want a few more labs to know whether that CD4 of 410 was staying at that level.  Even if I were ready to begin meds, I think I would want to a few more labs.  Your viral load is pretty low.  Do you know your CD4 percentage?  Do you have any idea how long you've been infected?

While well intentioned, I think your doc was being a tad dramatic.  For someone newly dx'd, suggesting they may not be around to regret delaying treatment could make them think they must start meds immediately, or die.  You have time to get a few more labs, see where things are, and to begin to prepare for daily, lifetime medication.  Your CD4 could have been decreased due to stress, lack of sleep, illness, etc.  Future labs could show your CD4 at 800.  Or, not. 

It sounds like you need more time to process this and to make a decision about whether to start meds.  The worst thing a doctor can do is pressure someone not ready to start meds, when they may not be ready.  I mean, unless they are in an urgent situation.  Starting meds when not prepared to be adherent is the main cause of treatment failure.   

       

Offline anniebc

  • Member
  • Posts: 5,942
  • AM member since 2003
Re: New here and need some help understanding everything.
« Reply #8 on: November 06, 2012, 02:05:53 AM »
Hi Tech

This is my standard reply to all new comers, I hope it will help in some small way.

First of all welcome to the forums, I know you will find a lot of support here.

Reaction to the results is difffernt for everyone, but over time you will find a way of coping with the virus that suits you and it might be quite differnt from how others deal with it.

No one here will ever tell you it's easy, it's ok to get angry or/and scared but don't let it take over your life, stress is natural it can actually help some of us get through certain situations but excessive stress can cause you physical symptoms and can damage your immune system even further, just try and find ways to manage any stress you may be feeling, learn to relax and listen to your body.

Along with HIV comes anxiety and one way of tackling this is through information. gaining confidence in yourself and making informed decisions about your future.

Support is also very important and you can get this from a qualified ID doctor , family and friend's that you trust, and of course there are many support organizations out there...just make sure whoever you discuss this with is sympathetic,supporting and  non judgmental about your HIV status.

Most important of all you have to remember that being HIV+ does not stop you from being the person you were before your dianosis, it really is important to remember that.

Jan
« Last Edit: November 06, 2012, 02:07:31 AM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline survivor703

  • Member
  • Posts: 106
Re: New here and need some help understanding everything.
« Reply #9 on: November 07, 2012, 10:44:57 AM »
Hey Tech, man, I'm sorry to hear of this. Like you, this is all new to me as well. I got diagnosed back in February. Since then, I've just been going to my doctor every couple of months and just kinda forgot about it. However, now is the time to consider starting meds because I'm noticing subtle changes in my body, which from research, seem to be HIV related. I think its probably best to freeze my immune system in this state, a fairly decent state, and just start the meds... but at this point, it's a life long commitment.

Like you, and many others who have posted. I am lonely, and have no one other than the people on this forum to talk to about things. I have not told my family for reasons similar to what WindySkies said. There just seem to be more cons than pros. It's been a lonely road, but I hope to develop a support group on this network. I just turned thirty, an hopefully I will live to see my 60's or 70's.

Cheers to a long life! PM if you'd like to chat. Welcome aboard.
02/14/2012 Diagnosed (Happy valentines day)
02/15/2012 CD4 502 21%, VL 69,134
04/10/2012 CD4 607 22%, VL 60,893
10/08/2012 CD4 615 15%, VL 155,981
03/01/2014 CD4 340 17%  VL 65,689
05/05/2014 1:18PM EST Started Truvada + Tivicay
06/03/2014 CD4 620 20% VL 30 (almost UD!)
09/08/2014 CD4 822 22% VL 55
Next Labs 12/2014

Offline Souledout

  • Member
  • Posts: 145
Re: New here and need some help understanding everything.
« Reply #10 on: November 08, 2012, 06:19:31 AM »
I's been an interesting month for me, the toughest part that I'm trying to deal with is the loneliness, I have decided not to tell any family or friends, so my only outlet to share is pretty much this website.

This must be really hard. I couldn't have handled the last few months without the support of people close to me. Sites like this are useful but are no substitute for a chat with a best friend or a hug off a loved one. If I were you I'd really try hard to tell someone. Obviously I don't know your situation and wouldn't want to judge or guess and wouldn't want to put extra pressure on you, if you do tell though I bet you'll find it not half as bad as you thought and the relief will be amazing.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

 


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