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Author Topic: I'm not sure what to do?  (Read 1966 times)

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Offline HIV? poz about being neg

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I'm not sure what to do?
« on: July 29, 2009, 08:48:05 PM »
Ok so my Doctor has been really great with me doing my labs regularly and several other tests like the pap and TB making sure I get my flu shots. I had concerns about my Lymph nodes awhile back and she sent me to a specialist, I had some skin issues she sent me to a specialist. So she does take good care of me. But anyways I had posted on the nutrition and HIV forum and some of the comments I got back where that people felt that I should be starting meds.
My Doctor has consistently said that everything is going great and that I'm coasting along well. She thinks I could still go a long time without meds.
Now when we did talk about meds I did get teary eyed and stuff. I told her my concerns about being thin already and my fear of getting Lypodystrophy and other physical changes that i might have to deal with.
She did say that if and when I would start meds that she would start me off on Atrpila. That was about a year ago the last time we talked about meds.
So any ways I guess my question is should I be talking to my doctor are my numbers really that low?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%
May/27/14    VL UD              CD4 750

Offline risred1

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Re: I'm not sure what to do?
« Reply #1 on: July 29, 2009, 10:09:01 PM »
What we think and the feelings we express will cover a wide range of experience. I don't think any one of us has the "answer", but classically, you start with the standard recommendations for starting treatment.

Which currently is using the 350 CD4 count as a line and a VL over 100k.

You may also hear what our doctors have been telling us.

My doctor said to me in February, as my CD4 began to crash and was at 365 with a ~100k VL that it was time. I foolishly tried to keep the supplements going with a twist here and there and then in a few months, CD4 290... VL 115k.

It also didn't help that my fatigue was increasing, and my really it was starting to impact my day to day life.

I don't understand why your doctor is saying that you can keep going for a long time. The guidelines are the guidelines. One isn't supposed to wait until your CD4 is 200... So one of the questions I would have for your doctor is, what is she looking for, or what indicators is she measuring before she starts you on medication?

Additionally, you mentioned Lymph Node issues. One of the latest discoveries is that for folks who have trouble getting their CD4 to recovery after treatment is related to Lymph node inflammation that apparently inhibits the ability of the body to keep the CD4's rebounding. I don't know what your situation is with your Lymph Nodes, but I would think in light of this news, waiting to go below 350 would not be a recommendation.

Also, the trend is and there is much discussion around recommending the Start Med line to a CD4 of 500. You will find that some folks are opting for this. Higher CD4 start points are indicating better med tolerability and strong CD4 recovery. What is expected is that starting treatment at 350 or 500, the trend is to see your CD4 eventually double. Obviously, 500 means 1000, and 350 mean 700. Everyone's experience is variable, but statistics give a glimpse of what the trends are, and what they are indicating.

Aidsmeds.com has an excellent tutorial starting with this link...

http://www.aidsmeds.com/articles/Introduction_4702.shtml

As to Lipo issues. Those are mostly associated with thymidine analogs - Zerit(d4t) and AZT. Timing is an issue as well, waiting longer is associated with more dramatic fat issues. In other words, if Lipo is a concern, waiting too long can exacerbate the impact of certain meds. LIPO issues exist, and some drugs are more aligned with them than others, but as the primary suspects are Zerit and AZT, which have largely fallen out of favor for treatment naive folks as ourselves.

http://www.poz.com/articles/411_2353.shtml

Atripla is very popular front line treatment with great virologic control and durability and simply once a day dosing. You doctor saying this is her recommendation is not surprising. Adherence to ones meds is the most important factor in maintaining virologic control and durability of ones initial treatment combo. Poor adherence leads to resistance, and then combo switching to overcome these issues.

But there are alternatives. I choose a PI based with Reyataz, Truvada and Norvir. I am very happy with this combo, take it in the morning, and go about my business. I have no noticeable immediate side effects at this time after 2 months of treatment. I say immediate, for things like Diarrhea, Nausea, Headache, Joint Pain, Fatigue, Skin reactions. There are other issues of course in the long term, but the immediate debilitating side effects for me on my combo is none, for the most part.

In fact I feel considerably better and my energy has returned and my ability to exercise.

I did create a thread asking based upon what you know today, would you have started meds sooner. I encourage you to review the commentary from that thread. This is more or less, the reality of today's treatments, which are not the infamous treatments from a decade to even 5 years ago.

http://forums.poz.com/index.php?topic=27437.0

When I turned POZ 5 years ago, I was like most, reading about the horrors and toxicity of treatment. The idea was to stay off of treatment as long as possible. In my opinion, that view has shifted considerably in today's world, but we often are scarred by our initial perceptions. This is called Perception Trailing Reality. Our experience is what creates our perception. And without new information to change our experience, our perception does not advance.

Aidsmeds news and this forum is a great resource, although it can also be a bit daunting because often you read about problems, versus success.

So if the trend is to start sooner, If your lymph nodes are impacted, if your counts based upon current guidelines are indicating time to start treatment, if LIPO is less likely to be an occurrence on the newer meds,  if folks are saying, for the most part, that they would have started sooner, then would you consider that as a flag that maybe its time to start preparing yourself?

This is my opinion. Other may disagree and I think that is quite healthy. As poz folks, we all have different views and experiences as even our doctors do. But overall, I think you'll see some consistency in view which may help you decide what is best for you.

 :)
« Last Edit: July 29, 2009, 10:25:52 PM by risred1 »
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline Inchlingblue

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Re: I'm not sure what to do?
« Reply #2 on: July 30, 2009, 02:04:17 AM »
wow, risred, that was an excellent and very complete response....I agree with all of it ;)

HIV? poz about being neg: My numbers were about 425 CD4s and only about 7k viral load when I started Isentress/Truvada on July 18th.......I'm not feeling any noticeable side effects at all

While you are not yet in any danger zone, your numbers are, at the very least, borderline as far as officially starting (which is I guess why you are asking for advice)....it's important to know trends with your numbers, you should consider what your VL and Tcell counts and % have been for the last 3-4 times you had bloodwork. Based on what I see in your signature, your numbers have been kind of steady for a while in this borderline area. You don't report several viral load readings, maybe the doctor has skipped those sometimes? You might want to make sure that from here on in she does viral load tests all the time, since it's getting to that point that you are seriously considering meds.

Based on seeing your numbers and reading what you said, I would start if I were you.
« Last Edit: July 30, 2009, 02:12:11 AM by Inchlingblue »

Offline HIV? poz about being neg

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Re: I'm not sure what to do?
« Reply #3 on: July 30, 2009, 12:37:33 PM »
Thank you so much for responding to my concerns after reading both your posts I called my Doctor and are going to discouse further what her plans are. She did mention that my VL was actually tested on my last visit and it was at 57 000. She still claims that is an average VL for someone who is not on meds. She said the guidelines in Canada are to start people with a CD4 between 350 - 400. She explained what she meant by me coasting is that my energy level has been good all in all considering being HIV I have been in really good health.
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%
May/27/14    VL UD              CD4 750

Offline BlueMoon

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Re: I'm not sure what to do?
« Reply #4 on: July 30, 2009, 01:07:39 PM »
I agree that it's not really clear in your case.  Your CD4 will probably only go down from here, but is acceptable for now.

It can be hard to recover after you numbers get too bad.  Last week I tested 'undetectable' for the first time in seventeen months of HAART.  CD4 is 300, up from a low of 157.  I wish I had been able to start treatment when my numbers were like yours.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Inchlingblue

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Re: I'm not sure what to do?
« Reply #5 on: July 30, 2009, 01:41:07 PM »
She said the guidelines in Canada are to start people with a CD4 between 350 - 400.

So basically the guidelines say you should start.

As risred said, re: lipo issues, not only are the meds better now but starting before there's too much immune system compromise has also been linked to better outcomes such as fewer intances of lipo.

I'm sure your doctor knows this but: you would need the tests to see if there are any resistances to any meds and if you go on anything with Abacavir (such as Epzicom, which is not bad at all), you would need a test to make sure you won't have a bad reaction to it.

It's shocking that some doctors don't know this stuff, there is a thread ("Starting Trizivir") in which the doctor did not do the abacavir sensitivity test first and the poor guy had a reaction to it, so you never know. Another person, in the "I Just Tested Poz" forum was going to be put on meds by his doctor, without first doing a resistance test. I find it's good to be an informed patient.
« Last Edit: July 31, 2009, 12:30:40 PM by Inchlingblue »

Offline bocker3

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  • Posts: 3,386
  • You gotta enjoy life......
Re: I'm not sure what to do?
« Reply #6 on: July 30, 2009, 05:58:17 PM »
... I called my Doctor and are going to discouse further what her plans are.

I have to say that this line sort of jumped out at me.  My feeling is that the decision to start meds (or not) should not be about your doctor's plans -- but about your and your doctor's plans/thoughts/decisions.
While you go to a doctor for their expertise, experience and advice -- you, ulitimately, are the one who lives with these decisions and should be part of them.

Having said that, I think that, like everyone else has pointed out, you do seem to meet the guidelines, so it wouldn't be unreasonable to start now -- nor would it be unreasonable to wait a bit longer.  I started at 288, but this was only because that was my second result (350 being my first).  Had I the opportunity, I would have wanted to start before getting to 350, but I didn't want to make a decision based on one result.  No one can tell you what to do, but you DO need to be comfortable with whatever decision you and your doctor come to -- together.

Good luck!

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline carpediem98

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Re: I'm not sure what to do?
« Reply #7 on: July 30, 2009, 08:14:24 PM »
Hi there,
You've gotten a lot of good advice on this thread and I think it's worth starting.  I think that the 350 threshold is low and will soon be adjusted upward to 450-500 in wealthier nations like the US and Canada.

I was hesitant to start medicine, as well - and starting medication was the best choice I ever made.

I take Truvada+Isentress (email me if you have specific questions) - I went undetectable in the space of a few weeks and am more alive than (perhaps) ever.  I cannot speak highly enough of this combination and how it has worked for me.  Not only do I have the good health I had before HIV interrupted my life... I also have the enthusiasm and excitement of one who has his life back!  That being said - you and your doctor will make your own choice.  I made my choice based on Isentress's excellent side-effect profile, its rapid effectiveness, and its slightly-better-than-sustiva performance in longer studies.  I also felt like there would be less chance of lipodystrophy with Isentress, only because I know several people who have ONLY taken Atripla who show some signs of the cheek changes.

And like bocker3 said - make sure you are a partner with your doctor in making decisions.  And when you start, rather than letting yourself feel a negative emotion, try hard to look at it as though you are taking control of your own health and your own future and showing this little pissant virus who's boss!!  WE win this war, HIV loses, and your first day of treatment will be your first day of your ultimate victory over HIV.

Now if we could do something about mortality in general...

GOOD LUCK!   :)

Offline HIV? poz about being neg

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Re: I'm not sure what to do?
« Reply #8 on: July 30, 2009, 09:34:16 PM »
Thank you again for your posts. My doctor and I will go over all of my options when I see her. I imagine this site has a list of all the treatment options and information regarding them. Could someone direct me to a page regarding them?
About the resistance test I did it about 9 months ago already. She said the only one I have to do is the HLAB5701 an "Aleo test" or something like that?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%
May/27/14    VL UD              CD4 750

Offline Ann

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Re: I'm not sure what to do?
« Reply #9 on: July 31, 2009, 02:05:22 PM »
The HLAB5701 test is to find out whether or not you can take Abacavir. http://www.hivandhepatitis.com/2007icr/ias/docs/072707_h.html

I'd say it's up to you whether or not you start now. If you don't feel you're ready, you can wait. I've been poz for twelve years and I'm not on meds yet. My number are similar to yours - they're in my profile if you want to have a look.

Ann
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