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Author Topic: when to start meds  (Read 3074 times)

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Offline beachdude2003

  • Member
  • Posts: 33
when to start meds
« on: February 07, 2008, 05:24:31 PM »
Hello everyone. I was diagnosed 12-24-07.  The last time I tested neg. was on 8-1-07.  I went to my new ID doctor and did blood work.  My cd4 count is 694. I haven't gotten the results from my viral load back yet. There are some doctors that believe if you have recently seroconverted that you should start meds right away. This will keep the virus out of the tissues and help in the long run. I travel each week for work and am on airline flights a lot. I am worried about getting sick from being always tired and being in airport. I am also a nurse and am in hospitals in patients rooms all the time.  Any thoughts about when to start meds?

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: when to start meds
« Reply #1 on: February 07, 2008, 06:22:28 PM »
Beach,

while there are numeric guidelines for starting meds, along with the "hit hard, hit early" school of thought, the best time to start, I find, is when one is ready emotionally and intellectually.  Learn about meds options and be prepared to argue with your doc for and against different combos.  Understand what side effects can be, and have an exit strategy in mind if they become too much.  And accept that your doc is likely to want to see two ro three sets of labs, at least, before doing genotyping to guide meds choices.

You have many days ahead of you.  Don't feel you need to be in a rush to take meds, as they will make the disease more real than you might imagine.

Namaste,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline beachdude2003

  • Member
  • Posts: 33
Re: when to start meds
« Reply #2 on: February 07, 2008, 07:47:17 PM »
Thank you.  Actually he did a geno and pheno type already we are just waiting on the results.  He said if he started me on anything it would be atripla.  I go back to see him on the 27th of this month.  My first appointment for my intake was last week. I am starting to get a little scared.

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: when to start meds
« Reply #3 on: February 07, 2008, 08:45:41 PM »
I assume that much of your apprehension is around the side effects of Sustiva.  If that's the case, do not feel obligated to take it and be prepared to demand a comparable combo of Viramune and Truvada, or another.
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline beachdude2003

  • Member
  • Posts: 33
Re: when to start meds
« Reply #4 on: February 07, 2008, 08:50:05 PM »
it's not really the side effects because I realize that most of the meds now, the side effects are mild and they subside over time.  I just really don't know wheather or not to start taking meds.  There are so many conflicting studies and reports.  Some doctors say to wait, other doctors say start right away. I was flying home the other day and a lady was beside of me in the aircraft, she was coughing and I tried for 2 1/2 hours to hold my breath so I would not breath her germs. I was a nervous reck by the time I got off the plane. All I could think of was "well, there go my numbers"

Offline BreakerOneNine

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  • Posts: 65
    • Myspace
Re: when to start meds
« Reply #5 on: February 07, 2008, 09:11:39 PM »
I went 11 years without meds....I wouldnt rush into it if I were you....I am now on Atripla and doing just fine....My doc had me wait til my numbers went below 300 and stayed there...but like has been stated and you will hear all kinds of different answers..the decision will end up being up to you and your doc.
poz 96 and med free til now.
Sept 2007 cd4 280 28.37% and VL 19,200
Nov 2007 cd4 230 25.87% and VL 38,000
Dec 2007 start Atripla
Jan 2008 cd4 490 32.5% and VL 119
Feb 2008 cd4 450 28.4% and VL less than 50
April 2008 cd4 510 28.6% and VL less than 48
July 2008 cd4 570 30.2% and VL less than 48
Dec 2008 cd4 570 32.0% and VL less than 48

Offline OneMoreGuy

  • Member
  • Posts: 77
Re: when to start meds
« Reply #6 on: February 08, 2008, 01:02:10 AM »
First let me state I am not a medical doctor, but a doctor in psychology. So, I understand your anxiety perhaps a little better.

You are right, there are different schools of thought regarding when to start taking meds.

However, my view is that the reason for wanting someone with a high CD4 count start on meds right away is to bring their VL down to undetectable as soon as possible thus making you less of a potential threat to others. So, although your health is thought about, it is not the main concern. The main concern is the potential 'risk' you pose to others by not taking medications right away because in time your VL will increase.

We all know CD4s can easily go up and down, but at 694 you are still in the healthy spectrum and any good ID doctor should be able to tell you that. The prevalent school of thought recommends starting meds when the CD4 count is at between 300-350.

I personally did not start in Atripla until I was at 196 with a VL of 146,000. I have never gotten sick before and I am not sick now. I only agreed to start on meds as a prevention and to help my CD4 count get above the 300 mark again.

If you read the threads about how people have coped with taking Atripla or the Truvada + Sustiva combo (same as Atripla), you will notice some had had bad side effects and others, like myself, have had nothing major that affected our work or workload. After my 12th day of taking the medication, all initial minor side effects that I experienced are gone.

While knowledge is power, only you can come to terms with your feelings about whether you should start medication at this point or not. You as a nurse know that well enough. The final decision at this point does not lay with anyone else but you.

Whatever you decide, I wish you good health.
Psychologist, PhD
Counseling patients with HIV since Jan 1991
HIV since Dec 2005
There are three parts to any successful relationship (platonic or romantic): trust, honesty and communication

Offline newt

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  • Posts: 3,878
  • the one and original newt
Re: when to start meds
« Reply #7 on: February 08, 2008, 05:06:22 AM »
You are unlikely to get sick from colds etc more often than anyone else with a CD4 over 500.  This is a "normal" amount of CD4s.

No study has shown beyond reasonable doubt that treatment in the early part of infection is a better option that starting when your immune system is moderately depressed by the virus, although some suggest this may be so.  Many studies have shown that treatment before your CD4 count falls below 200 is hugely beneficial. Some recent studies suggest that people who start closer to 350 have better health outcomes than people who start around 200.

In my book the right time to start is because you believe you are at the point where the benefits to you personally of treating your HIV infection outweight the risks. No-one is ever ready, but you can be prepared.

Getting your head round the whole being HIV-positive thing before starting treatment is important.

- matt
"The object is to be a well patient, not a good patient"

Offline beachdude2003

  • Member
  • Posts: 33
Re: when to start meds
« Reply #8 on: February 08, 2008, 08:37:02 AM »
Thanks to everyone for all of the good advise.  One thought that I have is that if I wait till my cd4 drops to around 350 how far up will it rise compared to if I start now with a cd4 count at 694.  I have been looking at peoples labs on here and it looks like the people that waited till around 350 or 200 only went up by around 100 points.  which would be a cd4 count of 450.  Wouldn't it be better to start now and maintain 694 or greater than waiting and only having a cd4 of 450?  Does anyone have any thoughts on that?

Offline LordBerners

  • Member
  • Posts: 415
Re: when to start meds
« Reply #9 on: February 08, 2008, 08:56:02 AM »
Your CD4 level is still comparable to a person not infected with HIV, beachdude.  Do keep in mind that once you go on the medications, you will have to deal with the immediate side effects and with the long-term problems they may cause, including changes in body shape and more importantly difficulties with liver and renal function.

I recently went on medications at a CD4 of around 300, and felt sicker for those two weeks than I ever have from the hiv.  I dropped them after losing 12 pounds in as many days.  I don't think one can assume anything from one person's experience, but I would say for many of us neither option is a very good one.

One thing I feel confident in recommending to anyone is that when you start medications, do it during a holiday - their effects can make functioning at work next to impossible.
Please, just call me Berners.. or Baron.

Offline tucker

  • Member
  • Posts: 35
Re: when to start meds
« Reply #10 on: February 11, 2008, 09:13:57 PM »
My CD4 is 524 and my doc is pushing me to start meds 'in the next 3 months'.  I thought I had plenty of time, a couple years even... but she said the 'new word' amongst the docs at a recent conference was that sarting around 500 cd4 is a better idea as your cd4s typically rebound to those of an uninfected person, whereas waiting until the 350 mark or lower lessens your increase to about 6-700.  Not sure if that info helps or confuses things more, but just thought I would throw that out there.
confirmed diagnosis 10.1.07
10/07  cd4 504 vl 40,000
1/08  cd4 524 vl 73,000
4/08  cd4 484 vl 48,060
6/02/08 started Truvada, Reyetaz, Norvir
7/08 cd4 605! vl 400
9/08 cd4 713 vl 175

k103 mutation :(

Offline beachdude2003

  • Member
  • Posts: 33
Re: when to start meds
« Reply #11 on: February 12, 2008, 10:01:53 AM »
That acually helps.  I have been reading a lot on that theory and it makes sense to me. I go back to my doctor the end of this month and I think that he may start me on Atripla.  Thanks to everyone that has posted a response.  It is never easy being the new guy. ;)

Offline Patrick

  • Member
  • Posts: 86
  • Where the determination is, the way can be found.
Re: when to start meds
« Reply #12 on: February 12, 2008, 10:22:17 PM »
Yes the increase in cd4s must be balanced against the possible long-term toxicities of the meds.  I decided to take meds right away, soon after seroconverting.  I got my positive result (and cd4 count / vl count) during my seroconversion, so I got to see the ugly picutre of what hiv was doing to me during that initial infection stage.  I staggered out of the doctor's office the same day with prescriptions for Truvada and Kaletra in my hand.  Started taking meds that same day.

It worked very well for my cd4 count to start meds immediately.  Just look at my signature.  One hell of a rebound.
Seroconversion - late October 07
11/14/07 - CD4 190   VL >750,000
11/14/07 - Started Truvada & Kaletra
12/5/07 - CD4 851     VL 710
2/19/08 - CD4 604     VL Undetectable
5/8/08 -   CD4 829     VL Undetectable
8/12/08 - CD4 915     VL 80 (blip)
11/11/08 - CD4 967    VL Undetectable

Offline beachdude2003

  • Member
  • Posts: 33
Re: when to start meds
« Reply #13 on: February 13, 2008, 08:36:02 AM »
Thanks Patrick and everyone else who have been so kind. ;)

Offline aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: when to start meds
« Reply #14 on: February 13, 2008, 10:14:31 AM »
Hey Dude,

The new 500 CD4 level they are speaking of coincidentally is the same level they used to recommend starting meds when the triple-drug cocktail first came out.

When my CD4s dropped below 500 in 1996, my doc and I discussed meds and we decided it was time to start treatment. Mind you, I was already 11 years positive at the time.

I think any suggestions to you should be two-fold. First, be up front with your doc about any and all concerns you have. This is an important part of your ongoing healthcare.

Second, Newt's suggestion regarding getting your head around having HIV before contemplating beginning treatment is wise counsel.

The bottom line is you have time so don't feel rushed into starting meds unless you feel comfortable with that decision.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline mgliberatore

  • Member
  • Posts: 3
Re: when to start meds
« Reply #15 on: February 15, 2008, 10:12:35 PM »
I wouldn't be in a huge hurry to start medications. Your CD4 numbers are good--you are NOT sick. This is key to remember: your body is harboring a medical condition, but you are not "actively" sick. Too many people would have us believe this equals "sickness". Do you FEEL sick? Have you had any opportunistic infections? I remained free from medical treatment for nearly 8 years, and felt fine the entire time. My doctor and I set a cut-off point (300 CD4s), and when I crossed that line, we began to medicate.

Two things: I completely agree with the importance of being "emotionally ready" to medicate. Once you start, you must comply with treatment. If you're not ready, don't start! It's far more harmful to seesaw back and forth with treatment than wait a couple of years to medicate. Next, do your research. The authors of "hit hard and hit fast" are the pharmaceutical companies. By now, I think we know they have a "profit over people" mentality, so be a wise consumer. Most doctors believe (in the USA) the cut-off point should be 300 - 400 CD4s. In Europe, I'm told it remains at 200 CD4s. Not sure why, except that pharmaceutical companies lobby a bit more strongly here in America... (ever notice how many drug reps are in your doctor's office waiting room per visit?)

Lastly, if you will require medication for the rest of your life, as we're told, why rush into it? Don't exhaust your options when you are not in need of medication.

Just my thoughts. I waited, as I've said, and I'm very glad I did.

Best of luck to you--
Michael
Michael in Los Angeles
"Be proactive and question everything!"

Offline milker

  • Member
  • Posts: 4,034
  • Protected phone sex
Re: when to start meds
« Reply #16 on: February 16, 2008, 12:46:34 AM »
Thanks to everyone for all of the good advise.  One thought that I have is that if I wait till my cd4 drops to around 350 how far up will it rise compared to if I start now with a cd4 count at 694.  I have been looking at peoples labs on here and it looks like the people that waited till around 350 or 200 only went up by around 100 points.  which would be a cd4 count of 450.  Wouldn't it be better to start now and maintain 694 or greater than waiting and only having a cd4 of 450?  Does anyone have any thoughts on that?

Beach, I just replied to your post in I just tested poz. At this point I don't think you have enough information on how your body is reacting to the virus to take a decision, unless you are definitely positive that you are ready for taking medication. You are still adjusting to your status and it is something to take into account. The numbers you show do not tell enough. You could go for the "attack as soon as possible". I personally couldn't do it without first adapting to my new status.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline tucker

  • Member
  • Posts: 35
Re: when to start meds
« Reply #17 on: February 16, 2008, 10:20:35 AM »
I have only been diagnosed for less than 5 months... it is a lot to get used to.  The more I accept my fate, and even learn to accept as something that is not even all that terrible... I have embraced the idea of starting meds.  I feel like it is my only way of fighting back, and sort of taking control of the situation.  I told my doctor this "I want you to tell me, point blank, that if you were in my position, knowing all you do about my numbers and progression, when you would start meds."  She said if she were me, she would start them at my next visit in three months... so that's what I am going with.  She pretty cutting edge, works with UNC Hospitals, attends all the conferences etc... and most importantly, knows my body, and how it is dealing with the virus.  I trust her to give the best suggestion, and that's what I am going with.  Her opinion on starting meds is sort of non-chalant, which I appreciate.  She said it's a shame that people get so hung up on the fear of meds, and put off starting them... she said, the cd4 count is just one measure of your immune system, and the time you are letting the virus progress, it is depleting other parts of your immune system.  So... even if your counts are relatively OK (like mine, cd4 never below 500--but a somewhat high viral load of 40,000-70,000)starting meds is a good idea, to keep damage to a minimum.  She also said that with good adherence, I can expect to get ten years or more out of my first line... which was reassuring.  Anyway... I know this is a lot of information, but I just thought some of it may ease your mind a little. 

PS something else that I was told that eased my mind was that, in my docs medical opinion, if you had to have a disease... HIV is the one you want to have.  It's manageable for the most part, if you do your part and be healthy/take your meds/follow appointments, and (unfortunately) A LOT of people have it.. so there is always new treatments coming online, and a lot of research being done.  When I thought of it that way, it really made it all seem not so bad, and even made me feel fortunate for not having a rare cancer, or MS or something equally terrible.  The worst part about HIV is mental, not letting it get you down.  Best of luck to you. ;)
« Last Edit: February 16, 2008, 10:24:21 AM by tucker »
confirmed diagnosis 10.1.07
10/07  cd4 504 vl 40,000
1/08  cd4 524 vl 73,000
4/08  cd4 484 vl 48,060
6/02/08 started Truvada, Reyetaz, Norvir
7/08 cd4 605! vl 400
9/08 cd4 713 vl 175

k103 mutation :(

 


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